Autism and More Into Adulthood

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The Autistic Spectrum

I will try and put as much info as I can on this page in the hope that it will help us all as our children grow. If you have information that you feel would be of help to parents, please write to me and let me know and I'll be happy to post it here, crediting you (if you wish). To send me an email, just click here:


Our children grow up. Much as we don't want them to, they will.  We blink and their baby faces have changed, showing signs of adolescence and we wonder where the time went, hoping that we appreciated the good days as much as we could and weathered the bad ones as lovingly and graciously as possible. We pray that our children come away with the knowledge and guidance that will help them on their journey through this life and not-so-perfect world. We want to shelter them forever but of course we cannot. We have to be realistic.  We parents that are blessed with special needs children have to teach our angels what most people take for granted.  Repetition is one of the keys to our children developing the routines that will see them through life.  And some of us have children that may not be able to fend for themselves and will need assistance throughout their entire lives.  We need to know about assisted living, trusts and more.  Children grow to be adults and adults have different needs, whether they are special needs or not. And what of the adults who have gone undiagnosed? How difficult their lives have been and continue to be!  Our children have gotten early intervention and are better prepared (we hope) than the adults that have gone through their lives not knowing they have Autism.  We all need to fight for awareness, not just for our children (and the adults they will be) but for the adults who have grown up without any help or guidance. Please do all you can to promote Autism awareness, in your own special way.  :)  Christina

NOTE: I received this article on one of my support lists at no charge with the request it be run unedited and unchanged -- for use in websites, newsletters, magazines, and other communications. If you have any questions, please contact Dan Coulter at or 336-608-4224.)



By Dan Coulter

Does your child with Asperger Syndrome sometimes resist your guidance?

As the parents of an adult son with Asperger Syndrome, my wife and I have found that as a child gets older and feels the need to assert his or her independence, it may be harder and harder to take advice from mom or dad.

This is not necessarily a bad thing. It’s important for our children to learn to solve their own problems. Especially as they become our adult children.

Still, it’s tough to see the effectiveness of, "Because I said so," recede into the distance.

If we see a continuing need to be involved in our children’s lives as they grow into adults, we need to acknowledge that they are becoming adults, and find appropriate ways to influence their decisions.

This can be a challenge.

People with Asperger Syndrome often have trouble with subtle distinctions. They may think, "Adults are independent. Being independent means making my own decisions. If I take my parents’ advice, I’m not acting like an adult."

So, what do we do when we want to respect our children’s quest for independence and still help them over or around a metaphorical brick wall?

The answer may lie in something I was told in military history class as a college ROTC cadet. The class was taught by a captain with a true Army man’s loyalty and belief that his branch of the service was vastly superior to any other. One day in class, he was having fun at the expense of the Marines.

"In the Army, we believe in using strategy and tactics to capture an objective," he grinned. "But the Marines, the Marines have another approach, which can best be summed up as, ‘Hey, diddle, diddle, straight up the middle, and the hell with everything else!’."

Needless to say, there were no Marines present. Had a Marine been present, I suspect we would have been treated to an enthusiastic corps-a-corps as to the accuracy of the captain’s characterization. Not to mention speculations about the captain’s parentage back through several generations.

But even assuming the captain’s statement represented slander to the Marine Corps, the point is that the best tactic to use in providing counsel to your adult (or near adult) son or daughter may not be the direct approach.

Our 25 year-old son, Drew, was diagnosed with AS when he was 14. He has a B.A. in creative writing, but has gone back to school to complete a two-year college program in accounting. He hopes what he learns about accounting will help him land a full-time job. He’s living at home and working part-time at our public library.

While he’s done well in his accounting classes, Drew recently had difficulties with some long-term assignments for a complicated auditing course. He was frustrated and his mother and I were concerned. Drew made it clear that he wanted to prove he could handle this without his parents’ help.

The solution involved my wife engaging the assistance of Drew’s job coach. The coach met with Drew to work out a new plan, including studying in the library away from distractions. They came up with a schedule for completing parts of the assignments. This schedule included, if necessary, approaching the course’s professor before the projects were due, to request additional time.

On his own, Drew enlisted a fellow student to explain some of the difficult concepts involved and started breaking down the obstacles that had caused his frustration. His mother and I were relieved. We were also impressed with Drew’s initiative in seeking another student’s help.

As parents of children with Asperger Syndrome, many of us get used to constantly having our hands on the safety net. We spend a lot of time wondering when to deploy it and when to whip it behind our backs and say, "What net?"

But if we can gradually forgo the direct approach and guide our children to find the help they need, even if it’s not from us, we may just reach the Holy Grail point for parents. That’s the point where our children are competent and confident enough to ask our advice because they value it, and not because they’re afraid they can’t succeed without it.


ABOUT THE AUTHOR -- Dan Coulter produces DVDs for people with Asperger Syndrome and autism and those who support them. He’s currently working on a DVD to help people with AS find and keep a job, which is scheduled for release in Summer, 2009. You can find more articles on his website:

Copyright 2009 Dan Coulter All Rights Reserved. Used by Permission.

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My husband, son and I attended a presentation at The Autism Resource Center in South Bend Indiana. It was given by a young man named David Hamrick. David is 25 years old and was diagnosed with high functioning autism at the age of 3.  He is a native of Williamsburg VA.  He is currently a Graduate student completing a Master's Degree in Meteorology in North Carolina University in Raleigh NC.  David is very active in the Autism community, has been an active board memober of The Autism Program of Virginia, has served as an officer on his local Autism Society Chapter and is a frequent presenter at Autism conferences. He's also writing a book about his personal experiences with Autism and how parents and professionals can better understand the disorder and how to cope with difficult circumstances when they arise.  I can't even begin to tell you how much we enjoyed David's presentation.  I know it was absolutely invaluable to the many parents and the educators/therapists that attended his presentation. I've gotten his permission to place his Q&A here at my website, for which I am very grateful. David is available for speaking engagements so please feel free to contact him. His information is at the bottom of the Q&A.


Weathering  Autism
Frequently  Asked  Questions

Hello!  My name is David Hamrick and I am a young man with high-functioning autism.  For the past six years, I have been doing conferences and workshops on issues related to living with autism and the following 50 questions have been asked by participants, including parents, teachers, care-givers, and other professionals in the field of autism.  All of the questions that follow have been answered to the best of my ability and do not necessarily reflect the views of any organization.  You may duplicate this material for yourself, your family, or your colleagues.  If you have a question that you believe should be included here, or you would like me to be a presenter for your group/organization, please feel free to contact me!

1. Why does my son/daughter hit him/herself on the head?
  There may be several reasons for these behaviors.  In the case of a non-verbal child with autism, it might indicate an attempt to communicate an unpleasant stimulus or environment, or it may warn of extreme stress or anger by the individual.  Children may also do this to receive sensory stimulation that they are otherwise deprived of, giving them the need to behave in this manner.  This can include tapping the head against a wall or desk.  It does not necessarily mean that he/she is engaging in self-injurious activity.
2. As a young child, did you mind being touched by others?
 I have always enjoyed affection from others, especially females.  I liked being hugged by my family, friends, and teachers.  My parents and care providers used this as a positive reinforcer to encourage good behavior and would be very unaffectionate when I exhibited undesirable behaviors or actions.  It is important to recognize that many people on the autism spectrum do not consider touch as a pleasant action and may cause unnecessary, unwanted behaviors.
3. How did your roommate at Christopher Newport University deal with the autism issues?
 During my sophomore year at CNU, I resided with another student in the same bedroom.  After a few weeks of living with him, I told him that some of my eccentricities were related to a developmental disability known as autism.  These issues included running an air filter at night to have “white noise”, washing my feet in the sink before going to bed, my vocal tics from Tourette’s Syndrome, and having the TV on a reasonably low volume.  Fortunately, with the exception of the foot-washing, he did not find these issues to be a problem.  I thus decided to wash my feet when he was not in the room or by showering right before going to bed.  These days, I use an alcohol sanitizing lotion for foot-cleaning purposes.  I have had single rooms with apartment style living in subsequent years, and I did not openly discuss my autism with them unless they inquired about it.
4. Did color pictures work better for you?
 Yes, and this holds true for most people on the autism spectrum.  They tend to be more visual learners than auditory learners.  This allows for easy grasping of the concept and also makes it more interesting.  This is becoming the norm in most schools and businesses for presentations.
5. What was most helpful for you in learning social skills?
 Social skills may be acquired in a number of ways, and there are books on the market that deal exclusively with this problem.  As for me, I learned many socially appropriate practices by observing my peers and seeing what worked for them.  On occasion, I even printed up surveys to have some of my high school classmates complete that asked questions about how I could improve myself and become more popular in my high school class.  Family members would also remind me when I needed improvement in my social conduct, e.g. wearing clothes that are color coordinated and placing the napkin in my lap at the dinner table.
6. On what basis do you select the foods that you eat?  Did you have problems with certain textures or colors of foods?  What foods do you like?
 Anybody who knows me well would say that I am a fairly selective eater.  There are many vegetables that have texture and taste violations, and can result in a gag reflex.   These especially include foods with rough leafage, like lettuce and cauliflower.  I am sometimes reluctant to try new foods, especially those with embedded vegetables.  I will also make food decisions based on how the meal physically looks (for example, a pictured menu at IHOP).  More restaurants and cafes should have pictured menus to help aid in the proper selection of a meal.  My favorite foods include: seafood, Italian, Chinese food, many soups, breakfast items, pasta, pizza, hamburgers, and yes, junk food.
7. What can educators do to help decrease feelings of isolation during adolescence?
 Unfortunately, this is a very common problem with people on the autism spectrum during adolescence.  There exist many people in our society who derive pleasure in making themselves feel superior to those that are different from themselves.  One of the most common problems is ostracism, or being “left out.”  This is something that I have always had problems with, and sadly little can be done to alleviate feelings of ostracism.  Educators and administrators can take some steps to help boost a child’s self-esteem and motivation:
 a) be available before/after school to discuss the child’s concerns.
 b) have a polite conversation with the classmates in question.
 c) hiring a counselor for the student to get professional feedback.
 d) involvement in extra-curricular activities.
 e) relating  a personal event of their own with the depressed child.
8. How should educators deal with behavior problems from your point of view?
 Positive behavioral supports were largely successful in my educational settings.  This refers to an environment that fosters positive behavior and a more pleasant atmosphere for the child.  An example of this was getting a middle school locker that was not located near a ringing bell (the sudden ringing of this loud bell is an auditory violation).  Error-free learning is also very important in encouraging motivation and productivity.  This refers to setting up the learning environment so that there is more success than failure.  For instance, more right answers are far superior to receiving more incorrect answers.  This also reduces undue anxiety.
9. What were some therapeutic techniques that were helpful?
Sensory integration therapy, behavior modification, speech therapy, and early intensive intervention were all implemented and successful.  There is one treatment that did absolutely nothing for me, and that was auditory integration.  In the summer of 1992, my mother and I traveled to Chicago for 10 days of auditory integration therapy.  The goal was to reduce my sensitivity to certain sounds (e.g. crunching and chewing sounds) after receiving this therapy.  Everyday during the 10-day period, I listened to different types of music through headphones twice a day, and the person conducting the training mechanically filtered the music.  Ever since, we have noticed no changes in my sensitivity to these sounds and it was a major waste of money for us. 
10.  Did your speech come gradually?
 As with most children, my speech did come gradually.  According to parental accounts, my first words came around my 4th birthday (1984) when I uttered the word “bedroom” to my parents’ amazement.  I was somewhat echolalic shortly following my first words.  Full sentences came shortly thereafter and my speech developed normally from there.  I was enrolled in speech therapy well into elementary school.  Prior to speech, my family learned to use simple sign language to communicate with me.
11.  Does it upset you when someone stops you from engaging in an obsessive activity?
 This was more of an issue when I was younger than it is today.  As a young child, I would become irate if somebody tried to stop me from spinning or not getting close enough to a truck on the highway to copy down its serial number.  I would also become quite agitated if I was denied feeling a person’s shoulder blades if I saw them in a pleasing manner.  Although I still have a few “special interests” today, I am better able to control my attitude when I am prevented from such an activity.
12.  My son/daughter frequently runs in circles in our home and at school.  Why might he/she be engaging in this behavior and what can be done to establish a more appropriate method to meet this need?
 I can compare this situation to my own spinning habits when I was younger.  Possible reasons for this behavior may include:  a temporary escape from reality, vestibular stimulation, getting rid of excess energy, alleviating boredom, etc.  Activities such as these should be redirected to a more appropriate setting.  For example, when I was spinning quite a bit as a young child, there was a designated area where I could do this, namely my bedroom.  Public areas such as the grocery store and school were not good places to be spinning and my mother told the special education staff about my spinning.  Do not try to prevent the child from engaging in these behaviors, but rather set limits as to where and when.  In the case of running in circles, this would be a good activity to do outside rather than inside.
13. After you learned to read, what type of material did you read?  Did you read books, magazines, newspapers, comic books, etc?  What topics did you like to read and do you still like the same topics?
 I have always been interested in non-fiction and science-based books more than fiction or literature.  One of the things that I detested so much about my high school English classes was the requirement of reading extensive poetry, short stories and novels that did not interest me in the slightest bit and thought of a dozen other things that I would rather be doing with my time in those classes.  Although I do not read newspapers on a daily basis, I do consult them periodically for interesting stories, weather and autism in particular.  Today, I would have to say that my reading preferences have not significantly changed except that I am reading more advanced material (meteorology and autism being my favorite things to read about).  I do not read continuously in my spare time as I have additional priorities, including time with friends and family, and bicycle riding.
14. It is often difficult for individuals with autism to understand abstract concepts.   Do you believe in the existence of a supernatural being?
Although it is difficult for me to always grasp abstract concepts, such as the existence of Jesus and God as a family, I do believe that they exist in a special way in the form of tiny subatomic particles that are so infinitely tiny that even the most powerful microscopes would not be able to detect them.  They are omnipresent in our society.  I will say that my church has never adequately explained this concept to me in a manner that I could fully comprehend as accepted by the Episcopal Church today.
15. Will there be a time in the future when autism can be prevented?
It is about time that society accepts us for who we are in spite of our differences.  I believe that although autism will probably not be cured anytime in the near future, it is important to recognize that significant advances in the field of autism are being made every year to help improve the lives of those affected by the disorder and that the problems encountered by those on the autism spectrum will be alleviated with time.  Methods are being devised to better manage behavior violations when they arise.  When asked this very same question, another gentleman with autism, Jean-Paul Bovee responded by saying, “It would be cultural genocide” if we eliminated autism completely as those on the autism spectrum are a unique culture.
16.  Would you want to be "cured" if a cure was offered?
 Didi Zaryczny, a parent of an autistic son in Virginia, was curious about this.  Autism is a very complex disorder involving several different parts of the brain.  If we are ever lucky enough to find a cure for autism in the future, I would be hesitant to “cure my autism.”  Many people I have spoken with whom are on the autism spectrum have said they are very happy with who they are and they feel like autism is a part of their identity, and I am no exception to this.  Even though I have experienced many challenges on life’s journey because of my differences, I feel like people have come to respect memore for the things I have been able to do despite having autism.  Many of my friends today have been made through the autism community in some way or another.  That in itself is invaluable!
17.  Do you have any heightened sensory experiences?  Describe them.
 My sense of smell is probably better than the average person.  I have been able to smell a woman’s perfume over 10 feet away when I first entered the room where she was standing.  Everybody else was curious as to why I was able to detect the perfume smell while others did not notice it.  I am also very sensitive to certain chewing and crunching sounds (bubble gum in particular) when around other people.  I had received  auditory integration therapy at age 12 to reduce my irritation for these types of sounds, but it seems that this treatment did absolutely nothing in terms of improvement and a waste of our money.  It should be noted that this auditory therapy does work well for some people on the autism spectrum.
18.  What would be a more appropriate choice for dealing with unpleasant behavior than a time-out or other punishment?
 Negative behaviors on behalf of a child are typically related to stress in their environment and are a way of calling attention to themselves.  One method of dealing with behavioral issues with a certain child is to use behavioral modification, which focuses on rewarding good behavior and the absence of the undesired behavior.  If an effective strategy is employed, the chances of reducing a specific behavior are pretty good, but this usually does not eliminate all of the child’s undesirablebehaviors.  It is very important to focus on the reasons for the behavior that the child exhibits rather than the actual behavior.  Being cognizant of stimulations from the child’s environment is helpful in determining a possible cause for the behavior.  Steps can then be taken to modify the child’s environment when feasible.  Other calming strategies for unpleasant behavior include:  using caring and sympathetic statements, listening to soft music, vestibular stimulation, and even ignoring the behaviors if the child is simply trying to get more attention for acting in that manner.
19.  How do you eliminate obsessions?
 Obsessions, or special interests as I call them, are behaviors or activities that a person exhibits because something about it really pleases or excites them.   In my case of feeling shoulder blades, I felt physically relaxed by feeling them and laying on the person’s back, but everybody else thought this was inappropriate and should not continue.  Even though I eventually grew out of feeling shoulder blades, I was not happy that others prevented me from doing this.  Needless to say, it is quite difficult for a parent or caregiver to minimize, much less eliminate, a special interest of an autistic child. One possible way of dealing with an annoying obsession from a child is to redirect the activity to a more appropriate setting.  For example, when I was spinning myself in the kitchen while dinner was being prepared, my mother would ask me to do this in my own bedroom.  These special interests can also be used as powerful positive reinforcers for the child. 
20.  What symptoms of yours do you believe got in the way the most for you?
 Several impairments come to mind here:  hesitation in starting conversions in social situations with people I do not know well, not being able to speak until I was 4 years old and throwing temper tantrums to show my distress, inability to prove to my parents that I was capable of having a driver’s license when I turned 16 years old, procrastination on school-related assignments, extreme difficulty in distinguishing the differences between flirting and a genuine outgoing personality on behalf of women my age in dating situations, and tourette’s syndrome in social situations.
21.  Are there any scents that are unpleasant or clothes that make you feel uncomfortable?
 I have always been very interested in smelling different things and it is important in understanding more about my environment.  The smells that I find objectionable are bad breath(!), dead animals, smelly bathrooms, and body odor (as in not taking a bath regularly).  I am fussy about the type of clothing I wear, especially when the temperature is above 70 degrees.  Types of clothing that I dislike wearing include tight jeans, corduroy, long-sleeved shirts (in warm weather), and wide-brimmed hats. In general, I prefer clothing that is fairly loose and non-constricting, and clothing that will keep me cool  in the summer.  Wearing long pants in warm weather conditions seems unreasonable to me.
22.  How were you able to develop friendships? 
      This was a process that occurred gradually as I got older.  I was better able to make friends in  college than in high school.  During the earlier school years (especially middle school) many students  form social groups called cliques that ostracized anybody who was different.  This often meant that I had a table to myself during lunchtime.  As I joined some school clubs (e.g. yearbook staff, key club,  Boy Scouts, church youth group, etc.), I became more intertwined with other people that had similar interests and had more opportunity to spend time with them.  I met two of my girlfriends from the local church group in Williamsburg and fell in love with my first “girlfriend” in the guidance counselor’s office in eighth grade.  There have been many more acquaintances than friends  throughout my life whom I am on good terms with but do not spend much time together.  Some of these acquaintances turn into friendships over time.  I have also found that treating others with dignity and respect at all times is very helpful in getting the friendship process rolling.
23.  How did you learn to act appropriately in given situations?  How did you learn correct body  language?
 Role modeling other peers in a social setting was a critical part of developing appropriate social behavior in different situations.  Throughout middle and high school, I paid close attention to how other students interacted with each other at the lunch table, in classrooms, at school dances, and even at another person’s residence.  Observing the other students was fairly simple but incorporating these social skills took time, especially when it came to developing a good sense of humor.  Some examples of appropriate conduct learned through role modeling include:
  a) knowing when to be quiet
  b) avoiding irrelevant topics during a discussion
  c) giving other people their own personal space (this is called proximics)
  d) knowing how to dress like everybody else (I don’t like tight jeans, though)
 Body language is a form of nonverbal communication that is learned primarily through practice.  In other words, you are seen before you are heard.  This is one of the more difficult skills for a person with autism to learn and master.  I have also learned this through role modeling of family and peers.
24.  How difficult is it for you to speak in large groups and what strategies do you use?
 Since the beginning of 1999, when I was 19 years old, I have been giving autism-related speeches to parent groups, schools, and autism conferences on a regular basis.  These groups range from as little as a dozen people to over 300 people.  I have always felt comfortable speaking in front of large groups, especially those that share a similar interest as mine.  I have taken two public speaking classes during my undergraduate studies.  Interestingly, it is somewhat easier for me to speak in front of larger groups as the pressure to perform is greater in these cases.  The strategies that I use include speaking directly to the audience and being very receptive to questions about my talk.  I prefer the use of PowerPoint slides when doing any type of presentation these days.  
25.  How do you think having autism impacted your sibling(s)?
 I have been very lucky in that there was no major resentment by my older sister while I was growing  up.  She was frequently the person who supervised me when my parents were away.  Occasionally my sister would get irritated by my behavior however, especially when she was younger.  She knew about my autism shortly after I was diagnosed with it.  At times, she found it difficult to accept some of my eccentricities when I was little (and she was in high school), especially feeling her shoulder blades and wanting to go everywhere she wanted to go.  I created a scene on the night of her senior prom when I really wanted to ride in the limousine that picked her up.  In fact, my uncle who was visiting us at the time had to physically restrain me from going outside!  She also got annoyed when I tried togo into her bedroom when she had friends visiting there (no boys allowed there!).
26.  When did your sense of humor begin?  What made your sense of humor develop?
 For most of my childhood years, there were very few things that brought out the giggles in me.  Toilet humor and jokes about sex were the things that made me laugh.  Outside of that, I really didn’t have much of a sense of humor until high school.  My sense of humor developed as I made acquaintances in high school and tried to role model them.  Many of my early attempts to be humorous were viewed as highly inappropriate by some of my classmates, especially the girls.  In an attempt to be funny, I would often make comments about farting, sexual pleasures, and things like that at the lunch table!  Are you beginning to wonder why I was the only one laughing?  I finally got the message that this kind of behavior is not acceptable when trying to eat a meal.  Overall, my sense of humor was slow to develop. 
27.  Is pet therapy relaxing for you?
         We have not had a pet (dog) in our family since my sister moved out of the house in 1993 after graduating from college.  While her dog was in our household, I did not enjoy its presence as it was unfriendly toward me and growled often.  I resented this behavior and looked forward to the dog leaving.  It is important to note that I don’t mind most animals and enjoy petting those that enjoy that type of affection.  Even though I enjoy playing with some pets, it is not as relaxing as getting a gentle massage or squeeze from a woman.
28.  What kind of difficulties did you have with your last girlfriend?
 There were a few issues that I had with Amber:  successfully maintaining a long distance relationship while I was in Raleigh and she was in Virginia, differences about if and when to get married(!), feeling accepted by her family, trying to interpret her body language when she is too shy to address an issue to me verbally, and her not having a car on campus and unable to get around like most other college students.  I also wish she was neater and more organized in her living style.  Despite the shortcomings in that relationship, it lasted 4 years and this was by far the most serious girlfriend I have ever had.
29.  What is one thing that you would change, if you could, about your elementary school experience?
 During the sixth grade, everybody was required to take a math placement test to determine whether they would be taking pre-algebra or regular 7th-grade math the following year.  Unfortunately, I was not deemed eligible for the pre-algebra placement, and it was very frustrating to me and my parents.  I feel like I would have accomplished more in middle and high school by being in the higher level math classes.  I was also upset that I did not make the Odyssey of the Mind team at Magruder Elementary School.  This club is an honor for those that have exceptional imaginative and creative abilities, and I felt well qualified for being a member of the OM at the time.
30.  I was wondering how you and your parents dealt with the tests that are supposed to measure your  intelligence. My biggest fear is that my child will not be able to perform well on these tests and be deemed to have mental retardation.  I know my child is intelligent, but will he/she be able to demonstrate it?
 This is a concern of many parents of children with learning and/or developmental disorders.  The test most frequently used to measure a person’s intelligence is the standard IQ test.  In the spring of 2000, I had the opportunity to participate in an autism research study at the University of Pittsburgh’s School of Medicine, under the direction of Dr. Nancy J. Minshew.  The study consisted of two MRI scans, an eye movement test, and pencil and paper tasks, which included a complete IQ test.  A person familiar with autism administered this test and investigated how these subjects take IQ tests.  At the end of the research study, I was notified that my IQ score was a 129, which is above average.  One of the problems with taking the IQ test is that it takes a considerable amount of time to complete (roughly 2-3 hours).  This is often longer that the attention span of people with autism and may find the environment to be unconducive to doing their best work (e.g. uncomfortable setting, attitude of the test administrator, temperature of the testing room).  There is also a version of the IQ test that is specially designed for people who are non-verbal.  In summary, do not be discouraged by a surprisingly low IQ score that your son or daughter may receive as this may be due to a failure to cooperate with the rigid testing procedures.
31.  What is it like to be autistic?
 Being a recent college graduate, everything seems and feels pretty much normal to me.  Except for my increased resistance to becoming dizzy and intense visual stimuli, all of my senses appear to be working normally.  For the most part, the same can be said about my emotions also.  I felt more different when I was a child/teenager than I do as an adult.  I usually felt like I was in my own little world and was often oblivious as to what was going on around me.  I took great pleasure in the different special interests that I enjoyed both as a child and today.  Today, I am more in tune with my surroundings and pay more attention to other people.  I am slowly developing empathy towards other people, a skill that is quite difficult for those on the autism spectrum to fully master.  Perhaps related to my autism are periodic episodes of depression when I feel like I am not important to anyone else and sometimes wonder what it would be like to be deceased.  More on my depression in the next FAQ question.
32.  Have you ever been affected by depression as a result of your autism?
 Many experts believe that there is a good correlation between people with autism spectrum disorders  and depression.  Although I can’t say for sure whether my mental state is directly affected by my  autism, I certainly go through depression episodes on the order of once or twice each month.  Each episode will typically last for an entire evening or even the whole day, but I am generally depression-free at least 90% of the time.  For several years, I was taking 10mg of Prozac (fluoxetine) everyday to help with my depression episodes.  In November of 2004, I decided to stop taking Prozac altogether to see what happened.  The result:  no changes at all!  Apparently the Prozac I was taking had a negligible affect on my depression and wondered whether it was the appropriate drug for me to take.It is my strong belief that no single medication can completely relieve feelings of depression!  The best cure for depression comes from the following sources:
 a) finding the true love of your life
 b) having friends include you in their activities
 c) other people making you feel important to them
 Although not the case for me, I know of people with autism who have talked about committing suicide  because they are so depressed, and alarming their parents and caregivers.  Any talk about suicide must not be taken lightly!
33.  How would you tell a child, say a teenager, that has just been diagnosed with autism that he or she has autism?
 This question was proposed to me by Stephen Shore, author of the book “Behind the Wall, Personal Experiences with Autism and Asperger Syndrome.”  He is an adult with high-functioning autism.  In my situation, my parents told me that I have autism in the fourth grade during my transition from a special education school to a regular school.  They began this important discussion by first bringing up the different special interests (obsessions) that I enjoyed up to that point, with those being shoulder blades, hubodometers, Clorox bottles, spinning without getting dizzy, and playing with long hair.  Mother mentioned to me that she considered these interests to be significantly different from those of my peers and wanted to explain why I was so interested in things like the aforementioned interests.  She told me that there is a reason for these and said that I have something known as autism.  At that time, I had essentially no idea what autism was, but I still acted surprised when I learned of my disability.  I did not become interested in knowing more about autism until I entered high school, at which point I was completely free of any special education support. The reason why they picked the fourth grade to tell me this is because I was transitioning into an environment with more neuro-typical peers and they wanted me to know why I might appear to be different from them.  It is important to remember that a young child will not be able to understand the implications of autism as well as an older child, and it also varies according to the level of the disability.  Parents should discuss this matter with the child when he/she has reached a level of understanding where it would have some meaning.  This should be a serious conversation with the child and should be explained in straightforward terms.   Personally, I would recommend telling a child about this between the ages of 7-10 if they were diagnosed early.  However, if they are diagnosed later in life, it is a good idea to discuss this with him / her immediately.  I personally believe that it is important for parents to discuss this issue with their child as it helps them to better understand what is happening.
34.  What does autism look like in a toddler? A school-aged child?  An adolescent?  An adult?
 Physically speaking, there are hardly any differences between a person with autism at any age and a normal person of the same age.  Unlike Down’s Syndrome where it is fairly easy to detect differences in the face, it is next to impossible to tell if a person has autism simply by looking at their body.  This holds true regardless of the person’s age.  Autism is evident in the actions and way of thinking of those affected, and the symptoms vary widely!  The main things people with autism share are impairments in social interactions, impairments in speech and communication, and restricted, repetitive, and stereotyped patterns of behavior, interests, and activities.  It is important for law enforcement personnel to be able to identify the warning signs of autism when dealing with a potentially criminal situation in the community.
35.  As a parent of a young child with autism, whom can we turn to (trust) for help?
This question was asked by Dr. Angela Scarpa, a psychologist at Virginia Tech.  Having a child recently diagnosed with autism can be a very traumatic and frightening experience, but that need not be the case.  Networking and getting to know other parents of special-needs children is very helpful in learning what works and what does not work.  Reading the latest books and research on autism gives the parent a plethora of information from which to make decisions regarding education, discipline, behavior modification, social skills, etc.  Finding a respected psychologist or physician can also work wonders, but make sure that they have an optimistic attitude toward you and your child.  Nobody wants to consult with a pessimistic specialist who believes that the status quo will not improve.  Also, be sure to attend conferences on autism spectrum disorders and early intervention.  This is a great way to network with other parents, autism specialists, and even people with autism who are willing to share their stories.
36.  How do you feel about donating your brain to autism research?
 A lot of valuable information can be learned through brain research on people with autism, both living and deceased.  When I was about 20 years old, I participated in a research study conducted by the University of Pittsburgh’s School of Medicine under the direction of Dr. Nancy J. Minshew. This is the same study that tested my IQ level.  The goal of this research was to determine whether significant differences exist in the brains of those with autism as compared to the general population.  Intelligence tests, MRI scans, and eye movement studies were all a part of this research, and it felt wonderful for me to contribute to the advancement of autism research.  Since I feel strongly about this subject, I would be happy to donate my brain to help find a cure for this disorder.  Many brain samples are needed from deceased patients in order for any further conclusions to be made.
37.  Did you like to line up toys? Did you have rituals? Please describe.
 This was asked by Mariko Reynolds, a parent of a daughter with autism in Virginia.  When I was a young child, my two favorite toys were Legos and pipes.  I collected all of the Legos that I received as a kid and the same can be said of my pipesets.  In terms of “lining up toys,” this is something that I never really did, but I found very neat ways of constructing things with both of these things.  For example, I would make things that I could fit myself inside of with the pipe set – creating a special place to which I could retreat to escape the real world.  As far as rituals are concerned, only 1 comes to mind.  Every night before I go to bed, I always clean my feet, in addition to having a shower earlier in the day.  For many years, I washed my feet in the sink, but now I have turned to an easier solution – hand sanitizer.  I never liked the idea of getting into bed with dirty or sweaty feet after wearing shoes all day.  From what I have gathered, most people will go to sleep with smelly feet (taking a morning shower) and this thought really does not occur to them like it does for me.
38.  More boys than girls are diagnosed with autism.  Can you speculate further on this?
 Currently, the number of males diagnosed with autism compared to females is roughly 3:1.  This ratio originates from the biological differences among the two genders rather than bias on the part of the psychologist or physician doing the diagnosis.  There is some dispute as to the exact ratio of autism with regard to the sexes.  Reported rates have varied from approximately 2:1 in some epidemiological studies to almost 5:1 in some clinical case studies (Baird & August, 1985).  Sex ratios have been speculated to be at their most extreme in non-retarded autistic patients.  Differences in the sex ratios in different samples likely reflect various social, environmental, and psychological factors.  The percentage of autistic males is greater than those of many other similar disorders, except for some disruptive behavior disorders (Lord & Schopler, 1987).  Despite the consensus on the increased incidence of autism in males, there is still some controversy over the nature and implication of the sex difference with this condition.  It has been suggested that sex differences reported in normal populations, such as male superiority in visual spatial tasks and female superiority in language kills, may contribute to the sex difference in the incidence of autism (Wing, 1981).  Significant sex differences in unusual behaviors were usually accounted for by significantly lower nonverbal intelligence in females than males (Lord et al, 1982).  However, unusual visual responses and inappropriate stereotypic play were more common in males than females even after IQ was controlled. 
39.  Is there a significant difference between the IQ of boys and IQ of girls affected by autism?
 Although more males may be diagnosed than females in this country, it appears than a higher percentage of autistic females have lower IQs than the males.  When IQ and receptive language functioning were considered together, more females than males exhibited a more deviant form of autism.  Autistic females were more seriously affected than autistic males and more likely to have an IQ under 50 and possibly have cerebral dysfunction.  However, when autistic males and females were paired together according to chronological age and receptive language functioning, both men and women were equally impaired in both cognitive and perceptual- motor abilities (Bolton & Rutter, 1990).  The implication of lower IQs among females with the condition remains unclear and the lower IQ level presents some problems in assessment.  Multiple explanations are possible including that females have a higher threshold for expression of the disorder, that the etiology of the condition might be mixed, or that females are more vulnerable to the underlying biological process (Ritvo et al., 1989).
40.  Please describe how your peers reacted to your atypical behaviors, unconventional use of language, or unusual fixation. How did they learn about your disability?
 Before I entered college
, some of my school-aged peers were less than accepting when it came to my differences.  Overall, I would say that only 20% of my peers in school were ever a problem to me.  Some of the problems that I had with peers included the following: 
 a) making unwelcome sexual jokes
 b) not letting me sit at their table in the cafeteria
 c) being teased in the locker room before P.E. classes
 d) refusing to give me a copy of their class notes when I needed them
 e) not invited to parties often
 f) had difficulty getting dates to school dances
 I really did not talk openly about my autism until I was in high school.  This was when I joined a state autism group and I learned more about the disorder.  My teachers learned about my autism through an information packet prepared by my mother.  I told some of my buddies in high school whenever they had a question about why I was acting different from other peers. 
41.  My child has problems falling asleep or staying asleep through the night.  What are some factors that can contribute to this problem?
 There are many factors that can interfere with a person’s sleeping habits.  Some of the bigger and more important factors are listed below. 
· Uncomfortable room temperature and humidity levels.  Sleeping in a room that is too warm can lead to night sweats and a need to remove all blankets and sheets, which are often necessary for comfort.
· Type of mattress used and its condition.  You should not be able to feel the metal springs in the mattress or hear squeaky sounds whenever you shift around in bed.
· Too much caffeine consumed during the day.  It is best to have caffeinated beverages earlier in the day and at least several hours before bedtime.
· Taking lengthy naps during the day.  You will feel more rested and have more energy after a long nap, thus falling asleep at the regular bedtime is more difficult.
· Not having enough pillows for head, arm, and leg support.  This is especially important if you sleep on your side and not on your back or stomach.  Ideally, one pillow should rest under the head, one as an armrest, and another between the legs.
· Unacceptable noise levels in the room or lack of white noise.  Being interrupted during the night by sudden noises can be a big problem, especially if the person is a light sleeper.  Consider a soft noise, such as an air filter running on low speed.
· High stress and/or anxiety.  A person is not as comfortable under these conditions.
· Sleeping in an unfamiliar environment.  This is more of a concern at private residences than at hotels.
· Weight and type of blankets used on the bed.  For many on the autism spectrum, having a thick  blanket over them serves as a type of sensory integration for them, giving slight pressure.  Changes in bedtime for the individual.
42.  Can you describe a recent dream that you had?
 On the morning of April 25, 1999, I had a vivid, weather related dream:
I had a dream about an approaching snowstorm.  Late at night, thin clouds were beginning to obscure the moon.  Shortly after the clouds arrived, the first round of snow came, with about an inch by morning.  There were flurries in the morning, and family members were arriving for a gathering at our house.  By the time I got up, there was a great deal of snowfall in northern Virginia, but according to the radar, it looked like most of the snow would pass us to the north, with a band of heavy snow and wind headed our way.  Looking at the radar and from what they had told us, they had passed through a thunderstorm with blizzard conditions approaching Williamsburg from the northwest. Once of them retorted, “It was worse than hell.”  Looking towards our west, the clouds did not appear as threatening as I thought.  Once the storm arrived, the clouds lowered and we were fogged in with gale force winds.  The snow was not as heavy as I would have liked to see, but we got a few inches out of it.  Numerous lightning strikes were reported in the Hampton Roads area after the storm had bypassed us. Four inches of snow accumulated by evening.  The next time I looked out my window, hoping to see a heavy blanket of snow, it was less than an inch deep on the roof of the sunroom below the window.  A mixture of rain and sleet was falling, and the last weather report I heard predicted much more rain was on the way, and the worst of the rainstorm was yet to come.  At that time, the temperature was in the upper 30’s and rising.  I went out for a walk to see what was happening, and by the time I got back home, no more snow was left, except for a few slushy areas on the grass. 
43.  What interventions do you recommend for parents/teachers to provide for their children?
· Always be patient and allow them to be expressive by listening closely to them.  Accurate interpretation of body language is important in order to understand a non-verbal child well.
· Offer a wide selection of social/special services for the child or adult.  This is very important and improves their chances of succeeding in school and the social realms.  Every individual affected by autism is different in some way or another!
·  For special needs students in regular classroom settings, allowing the pupil/student to take quizzes and tests in a distraction-reduced (least restrictive) environment, such as a vacant room, will be beneficial.  This accommodation must be noted in the child’s IEP.  If the person is a college student,  the Disabilities Coordinator on campus should send a memo to the student’s professors.
·  Timed tests are an unnecessary frustration to students with autism and other developmental disorders.  If possible, allow extra time for the classwork/testing to be completed.   Again, make a note of this in the child’s IEP.  Most colleges and universities require that professors make these types of accommodations to special needs students in their classes.
· Provide frequent positive feedback on the individual’s performance.  This will serve to improve their self-esteem and enhance optimism.  This can work wonders in improving feelings of depression!
· Leave their play environment alone as much as possible, unless a dangerous situation should arise and safety precautions must be taken.  For example, leaving Legos and other toys on the stairs can be hazardous and should be picked up.
· Use positive reinforcers to encourage positive behavior.  The subject of the child’s fascination is a powerful reinforcer and can be instituted effectively to teach a variety of lessons.  In my case as a young kid, I was allowed to feel a family member’s shoulder blades if I behaved properly.
· Try to spend as much time with them as possible, especially if we notice signs of depression.  They  may, however, want solitude and exhibit no interest in the company of others.  This is relatively common for people with pervasive developmental disorders.
· Always tell them ahead of time if any actions are to be taken.  For example, a parent should tell the child 30 minutes before bedtime so they will know what to expect and reduce the chance of anxiety.
· Try to maintain a regular daily routine.  Avoid any sudden changes as autistic children frequently have trouble adapting.  Gradual transitions are important if there are any changes to be made in their normal routine.
· Make appropriate accommodations in their sleeping environment, including comfortable temperature, amount of light, sound, pillows, blankets, etc.
44.  What are some actions that should be avoided when dealing with a person who has autism?
· Don’t act like a total dictator around them.  I do advocate discipline for foul behavior, but it should be administered in a humane manner.  The trick is determining where the appropriate boundaries lie.   Actions that should be avoided include corporal punishment, raising voice, profanity, discipline in a public setting, and abashing.
· Don’t deny them a chance to succeed by keeping them in a special education classroom or special school for their entire schooling when they clearly have the ability to do well in a regular classroom setting, especially for high-functioning autistic or Asperger’s Syndrome individuals.  This is commonly referred to as inclusion in public schools and mainstreaming is the supplementation of regular classes with a special education program.
· Don’t allow them to attempt a task or job for which they are not prepared.  When seeking employment, be sure to check the requirements of the job.
· Don’t assume that one specific therapy works well for all people with autism.  Each person is unique and since the symptoms of autism vary so widely, many therapies are in use today.  A person who adopts well to one treatment or therapy could very well respond poorly to another form of treatment. Researching the different therapies and attending conferences will help in finding the best treatment method for the person.
· Don’t adopt a “wait and see” attitude when autism may be suspected.  Any unusual behavior that emerges should be noted and professionals (i.e. physicians, psychologists, psychiatrists, etc.) contacted immediately.  Waiting any longer than necessary will delay early intervention, a very important step in correcting these problems.
· Never use the phrase, “Because I said so.”  This is an unnecessary use of parental authority.
45.  Explain your position on educating students with autism in a regular classroom setting.
 Children with disabilities should have the rights to education in a regular classroom setting.  This includes children with autism.  There are moral, civil, parental, and legal rights pertaining to the benefits they receive by being educated in a regular classroom with peers like them.  According to Kids Together, Inc., the moral right explains how children with autism and other developmental handicaps are first and foremost children who have the same rights as everyone else.  Inclusion in a regular classroom allows the child with autism to develop better social skills and also make friends.  When treated fairly in the classroom, these children will benefit from the same experiences that all children desire.  The right for the disabled child to be offered equal opportunities brings the discussion to the civil right issue.  Everybody knows that separate is not equal and that access should not be denied to children with autism and other developmental disabilities.  In order to assure that these children have a bright future, it is imperative that they have the right to attend the same schools and classes with their typically-developing peers.  The parents of the child with autism have a major say in where their child will attend school and the type of educational setting.  They have the parental right to insure that their child is placed in the best learning environment possible so that he/she can learn best.  The parents, more than any teacher or professional in the field, know their child and his/her needs best.  This issue of inclusion also has some ethical ramifications.  Including children with autism in general education classrooms would provide them a valuable sense of belonging.  It has been proven that those who feel of value and importance in society will have a better overall quality of life both in and out of school.  And let us not forget the legal right of our precious children.  The Individuals with Disabilities Education Act (IDEA) was passed in 1975 and further amended in 1997.  According to Kids Together, Inc., this federal act states that children with disabilities, such as autism, are entitled to an education to the maximum extent possible with children who do not have disabilities.
46.  How do you decide what you will eat when you visually examine your food?
 The way it looks to me has a lot to do with it.  If it looks like things I have eaten in the past, I will probably try it.  I normally do not eat salads or other green-leafy vegetables.  I like foods that are homogeneous in nature and do not have other foods mixed in.  For example, I would prefer regular wheat bread instead of bread with embedded chopped nuts. In addition to visually inspecting food I have never tried before, I will sometimes gently sniff it to see whether it would be appealing to me. 
47.  My family is planning to take a flight and our son/daughter with autism will be coming with us.  Do you have any advice for reducing anxiety levels and sensory overload?
 a) Tell your child with plenty of advanced notice that he/she will be traveling by airplane with his/her family and what to expect.
 b) If the child wants to have a window seat to be able to check out the sky and look down on the ground, bring this to the attention of the airline.  The same holds true if the child desires an aisle seat.
 c) The changes in air pressure are minimized on larger jet aircraft since they are better pressurized than the smaller, turbo-prop aircraft.  Except for some ear-popping at take-off, no major problems should be expected in that regard.
d) If noise is an issue for the child, bring along a good pair of earplugs to use.  Also, ask to be seated toward the front of the plane where there is somewhat less noise and further away from the loud jet engines. 
 e) Should the flight make a connection in another city, make sure to attend to the child at all times and try to make the connection as quick as possible.  This constitutes being in a totally unfamiliar setting.
48.  What abilities did you have as a child that neuro-typical children did not?
 Two particular abilities come to mind.  The major ability that I believe is somehow connected to my autism is being able to spin for an extended period of time (5-10 minutes) without feeling seriously  dizzy.  I was able to spin longer and faster as a child than today, and I hardly ever spin these days unless it is part of a talent show or demonstrating it for a conference presentation. The other is a very good memory for certain facts and numbers.  For example, I can remember the years we took family vacations and where.  For example, in July of 1986, our family went to San Destin, FL, for two weeks.
49.  Please describe any vision issues that you have.  What helped you most in terms of vision?
             Recent physicals have shown that my vision is above the 20/20 average.  I am particularly annoyed by flickering light, such as traveling through a forested region on a sunny day.  Epileptics sometimes have seizures triggered by flickering lights.  When I was a little child, I would have the overhead light on in my bedroom to easily accelerate the sleeping process.  One reason for this was simply a phobia of darkness.  Lights were particularly important during lightning storms, and they are still used for this purpose today.  I would be ill at ease if I had to sleep in a room with other children who wanted total  darkness for sleeping.  This was often a problem while staying at Camp Easter Seals as a child.
50.  What interventions do you believe helped you to succeed?
 a) beginning early intervention at the age of 18 months at Child Development Resources
 b) being enrolled in a play school program for two years under the direction of Sue Swadley
 c) receiving speech therapy through third grade
 d) being mainstreamed in regular math and spelling classes starting in the first grade
 e) transitioning from a special education program (PACES) to a regular school environment during the fourth grade
 f) having excellent people on my IEP team
 g) getting into a university that has a meteorology curriculum!

David Hamrick
Presenter on Autism Issues and Advocacy
216 Richard Brewster
Williamsburg, VA  23185
(919) 270-0407


Adults With Asperger's ~ Floyd Tilton

Recognizing the Signs
We've probably all read the stories about famous people who possibly had Asperger's Syndrome, but were undiagnosed. The names mentioned range from Albert Einstein to Thomas Jefferson. These people lived or became adults before the diagnosis of Asperger's Syndrome or high functioning autism even existed, so no one can tell for sure if they had this condition or not, but they shared common characteristics with adults who have been diagnosed with Asperger's Syndrome today.
What are these common characteristics? How can a person tell if they might be an undiagnosed Aspie, a term many Asperger's patients use to refer to themselves? Is there help for the adult who carries an Asperger's diagnosis? These are three questions in the minds of a large number of individuals.
The Cambridge Lifespan Asperger Syndrome Service(CLASS), an organization in the United Kingdom that works with adult (age 18 or older) Asperger's patients has developed a simple ten question checklist to help identify those individuals who fit the common characteristics of Asperger's patients.
    * I find social situations confusing.
    * I find it hard to make small talk.
    * I did not enjoy imaginative story-writing at school.
    * I am good at picking up details and facts.
    * I find it hard to work out what other people are thinking and feeling.
    * I can focus on certain things for very long periods.
    * People often say I was rude even when this was not intended.
    * I have unusually strong, narrow interests.
    * I do certain things in an inflexible, repetitive way.
    * I have always had difficulty making friends.
Does meeting all of these descriptions mean that the individual has undiagnosed Asperger's Syndrome? No, it simply means that they share characteristics with others who are classified as Asperger's patients. Are these questions diagnostic in nature? Again, the answer is No. The questions themselves might be used to rule out Asperger's, but they do not lead to a diagnosis. They are simply indicators of similarities.

Asperger's Adults and Forms of Help
Help for the adult with Asperger's is available in the following forms:
    * Relevant information on Asperger's Syndrome
    * Social support groups for the patient and his/her family
    * Advice to employers, family members and care givers
    * Sheltered employment opportunities if they are appropriate
    * Social skills training to help develop necessary life skills
    * Advice on disability benefits through public or private programs
For most adults with Asperger's, the condition is not a disability, according to the rules that agencies such as Social Security use to determine disability. According to Social Security's definition, a disability must prevent ANY "substantial gainful activity (SGA)." This is currently defined by law as income over $700 per month. Many Asperger's individuals are able to earn more than this, not in sheltered workshop settings, but in the nationwide economy in general. As a result, Social Security looks at each case on an individual basis, based on such things as the individual's ability to do work related activity. A close look at the common characteristics listing above will show that unless they are severely limiting to the individual, none of the characteristics would prevent some types of gainful employment.
For the adult with Asperger's Syndrome, a strong support system, educational and vocational training opportunities, and social skills training appear to offer the best chance for a successful integration into society and the work environment. Programs such as the CLASS program offer an excellent opportunity to make this integration possible. Once this integration takes place, the adult Asperger's patient can make a successful transition into life's mainstream.
From the DSM-IV
According to the DSM-IV, which provides the diagnostic criteria for almost, if not all, psychological conditions, (whether or not autism spectrum disorders are neurological in nature or not, the diagnosis comes from the DSM-IV) Asperger's Syndrome is diagnosed by the presence of the following behavioral characteristics.
(A)  Qualitative impairment in social interaction, as manifested by at least two of the following:
  • marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
  • failure to develop peer relationships appropriate to developmental level a lack of spontaneous seeking to share enjoyment, interests, or
  • achievements with other people(e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
  • lack of social or emotional reciprocity.
(B)  Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
  • encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus apparently inflexible adherence to specific
  • non-functional routines or rituals stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
  • persistent preoccupation with parts of objects
(C)    The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
(D)   There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
(E)  There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
(F)  Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia
These are the some of the same criteria needed for a diagnosis of autism, with one major exception. Autism's criteria includes the presence of language delays. With Asperger's Syndrome, these delays are usually not present. As a result, the ability to work is not limited by the inability to communicate effectively, and this makes it much harder to obtain disability benefits.

10 Things an Autistic Adult Wishes You Knew

A group of adults with autism have written a list of "10 things an autistic adult wishes you knew" as a reaction to the list "10 things a child with autism wishes you knew", the popular list which had circled internet sites and is being made the subject of a book.
The group of autistic adults felt that the parents list was not accurately reflecting autism, particularly for adults on the autism spectrum.
Autism is a lifelong condition, though media articles usually focus on how it affects young children. Autistic children grow up and become autistic adults, each with their own particular needs, support requirements, and opinions.
This is the list -
1. I am autistic, not just an adult with autism. It is part of who I am. Autism is a part of who I am. I was born this way. I would not choose to change that. Acknowledging my autism as a part of me is entirely compatible with respecting me as a person with thoughts, feelings, and talents. I am a human being like everyone else and deserve the same dignity and respect that any one else deserves. Please consider whatever term I prefer and do not use language that suggests I suffer from an unfortune disease.
2. Autism is a neurological variation, not a disease, or mental illness. Autism often includes differences in social behavior and practical skills. My behaviors and learning styles might vary. My perceptions may differ. I may learn and understand things in way thats different and process the world in a different way. Please do not judge me or other autistics for our differences.
3. Who I am and what I am capable of is not defined by medical diagnosing criteria. I am born with my own set of abilities and difficulties, autism included. Those who use it to tell me who I am and what I can do are using it as a sterotype.
Please do not make generalisations and assumptions about me or other autistics.
4. I am not going to be cured.  Nothing will change me, and if it could, it would destroy who I am completely and would leave me worse off. I have the right to refuse questionable or risky treatments. My life is my own, I do not want to be cured and I think the idea of curing me and other autistics is wrong. Please respect my individuality and do not try to fix me, because I am not broken.
5. I may be your adult child, but my life is own. Parents do not have the right to choose questionable or risky treatments without my consent. I have my own mind. I can think for myself. I know what I want and don't want.
6. Focus on the positives of my, and others autism, I am living my life as best as I can, I want to make the most of it every day. Talking negatively about autistics and focusing on our weaknesses all the time causes me and other autistics emotional distress. Please do not use language that suggests that being autistic is bad.
7. I am a logical thinker, that is one of my strengths. It can make me take words literally, or misunderstand jokes. Also I may be misunderstood equally by others, if you do not understand my own logical style. I do have my own sense of humour that is unique to me, it's a stereotype that autistics have no humour.
8. Socialising is not always easy, if I don't want to join in, thats my choice, and I will avoid a situation if I am uncomfortable with it. I am not trying to be'rude' or impolite. It is simply better for me to participate socially when I choose, rather than feeling forced.
9. I do have emotions, autistics are not emotionless like some stereotypes suggest. However, I may express them in a different way. What may make someone else cry, can be different for me, it doesn't mean that I don't care, or am an uncaring person. My facial expressions might not always reflect my emotions.
10. If you have an autistic adult in your family, try to find out information about autism. Many articles in the media only concern children, try and find out the differences in an autistic adult. Some autistics do get married, have jobs, leave home, some don't, we are all unique.
Please do not use language that suggests that being autistic makes a person violent.
It is hoped that the list can bring greater awareness of how it feels to be autistic, and educate people that neurological differences can have positives aswell as negatives.
The list will be added to the online autism encyclopedia - for people to read if they wish to learn more about autism and asperger's syndrome.



Children and families experience many transitions, large and small, over the years. Three predictable transitions occur when children reach school age, when they approach adolescence, and when they move from adolescence to adulthood. Other transitions include moving into new programs, working with new agencies and care providers, and making new friends. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others.


As a parent of a child with special health care needs you may be caught up in day to day survival.  You may ask, "How can I think about tomorrow when I'm just trying to make it through today?"  But when those moments come when you can catch your breath it may be helpful to be aware of those transitions and allow yourself to think about the future.


The Transition Timeline for Children and Adolescents with Special Health Care Needs may help you think about the future. We hope it will give you ideas to help your child achieve independence in his or her own health care, and in other areas of life as he or she grows.

Transition Timeline
Birth to 3, or according to your child's develmental ability:
Assure your infant the world is a good place in which to live. The development of a sense of trust is vital to the development of a healthy personality.

Allow your child to develop at his/her own individual rate.
As a parent it is important to take short breaks from your child to renew energy with which to enjoy him/her.
Begin keeping a record of your child's educational and medical history, including immunizations.
Transitioning to Preschool
Contact a Family Resources Coordinator (FRC) for services/programs to help you and your child. If eligible, the FRC will coordinate needed services for your family through an Individualized Family Service Plan (IFSP). Call Healthy Mothers, Healthy Babies (1-800-322-2588) for your local FRC contact.
Seek a parent program for emotional support and networking.
Involve your child and family in community and recreational activities that include children with and without special needs.
Begin transition planning (from Early Intervention Program to
Early Childhood Special Education Services/Public School
Preschool or community program) by age 2 1/2: the FRC coordinates this.
A transition plan meeting must be held at least 3 months before your child's third birthday and a written plan developed.
By age 3
If your child is eligible for Early Childhood Special Education Services an Individualized Education Program (IEP) must be in place by your child's 3rd birthday - or the FRC will work with you to identify other programs/services.
By ages 3-5, or according to your child's developmental ability:
Assign your child chores appropriate for his or her level of ability.
Encourage decision making skills by offering choices.
Teach consequences of your child's behaviors and choices.
Continue involvement in community and recreational activities that include children with and without special needs.
Begin asking "What do you want to do when you grow up?"
Begin teaching your child about his or her special health care needs.
Begin teaching your child self-care skills: normal skills and those related to his or her special health care need.
By ages 6-11, or according to your child's developmental ability:
Continue assigning your child chores appropriate for his or her ability level.
Continue teaching your child normal self-care skills as well as skills related to his or her special health care need.
Begin helping your child interact directly with doctors, nurses, therapists, and teachers.
Assess your child's perception and basic knowledge of his or her special health care need, and build on his or her understanding.
Encourage hobbies and leisure activities; include exploring community and recreational activities, clubs, 4-H, Scout, Campfire, YMCA, sports, etc.
Continue to encourage decision-making skills by offering choices to your child.
Take your child shopping whenever possible. Ask him or her to help choose purchases.
Let your child choose how to spend some or all of his/her allowance.
Teach your child that his or her behaviors and choices have consequences.
Allow your child to experience the consequences of poor choices as well as good ones.
Begin teaching your child self-advocacy skills.
Take your child to visit your place of work.
Continue asking your child, "What will you do when you grow up?"
By ages 12-18, or according to your child's developmental ability:
Continue to allow your teen to help with family chores.
Continue teaching your teen normal self-help skills as well as
skills related to his or her special health care need.
Continue to encourage hobbies and leisure activities.
Assess your teen's perception and basic knowledge of his or her special health care need, and fill in gaps in his or her
Begin helping your teen keep a record of his/her medical history, including conditions, operations, treatments (dates, doctors, recommendations) and Individualized Education Program (IEP) if on an IEP.
If on an IEP, encourage teen to participate in IEP meeting.
Begin helping your teen take responsibility for making and keeping his or her own medical appointments and ordering supplies.
Begin exploring health care financing for your soon-to-be young adult.
Discuss sexuality with your teen.
Help your teen identify and build on his or her strengths.
If your teen is interested, explore support groups.
Begin to talk about and explore career interests with your teen.
Help your teen find work and volunteer activities.
Help your teen identify and be involved with adult or older teen role models.
With your teen, encourage age-appropriate care from his/her family practitioner or pediatrician.
With your teen, begin to identify with whom they will eventually be receiving their health care as an adult.

By ages 18-21, or according to your child's developmental ability:
If on an IEP, you may want to encourage young adults to stay in
a school program until age 21.
If on an IEP, continue to encourage young adult to participate in IEP meeting and continue transition planning with young adult and IEP team, including employment and adult life activities.
Act as a resource and support to your young adult.
Encourage your young adult to participate in support groups and/or organizations relevant to his or her special health care need.
Finalize health care financing with your young adult.
With your young adult, finalize age-appropriate medical care from his/her family practitioner or transfer to an adult provider.
By age 14
Transition Plan from School to Post-School options begins for teens on IEPs. They must be invited to participate in their IEP meeting.
By age 17
Begin exploring health care financing for young adults.
Notify Division of Vocational Rehabilitation (DVR) for teens with and without IEPs by Autumn of the year before they graduate.
If appropriate, begin guardianship procedures two months before the teen turns 18. Guardianship may be full or limited.
Notify student of rights that will transfer to him/her on reaching the age of majority at least one year before the student reaches the age of majority (age 18 in Washington State).
By age 18
Check eligibility for SSI the month the teen turns 18.
Investigate SSI work incentives, such as Plan for Achieving Self-Support (PASS).
Contact campus student disability services to request accommodations for youth attending college.
By age 21
For young adults with developmental disabilities, notify the Division of Developmental Disabilities for adult services.
Can sign up for DDD at any age, the earlier the better.

Adolescent Autonomy Checklist




Plan To



Can Do




Operate appliances (cook top, oven, microwave, toaster, dishwasher)        
Use common kitchen tools (can opener, bottle opener, knife, measuring cups/spoons, grater, timer, egg beater, etc.        
Help plan and prepare meals        
Follow a recipe        
Put away the leftovers        
Set the table        
Do the dishes        
Familiarity with contents of packaged foods        
Put dirty clothes in hamper        
Sort clothes        
Use washer and dryer        
Hand wash        
Fold clothes        
Put clothes away        
With the Family        
Watch TV news and discuss together        
Help take care of siblings        
Participate in family decisions        
Plan family outing        
Take care of pets        
Clean room        
Make the bed/change the bed        
Choose decorations for room        
Minor repairs (change light bulbs, repair or assemble toys)        
Take out the trash        
Basic sewing/mending skills        
Plant a garden        
Mow/water the lawn        
Weed the garden        
Learn appropriate use of garden tools        
Plan fire exits and emergency procedures        
Know where candles and flashlights are        
Use a fire extinguisher        
Know how to turn water off        
Know community emergency telephone numbers        
Know where extra house key is located        
Unclog the sink or toilet        
Personal Skills        
Use the phone        
Have a house key        
Budget allowance        
Go shopping        
Have privacy in the bathroom        
Manage personal grooming (shampoo, bath, shower)        
Get a haircut        
Choose appropriate clothes to wear        
Health Care Skills        
Understand health status        
Be aware of existence of medical records, diagnosis info, etc.        
Prepare questions for doctors, nurses, therapists        
Respond to questions from doctors, nurses, therapists        
Know medications and what they’re for        
Get a prescription refilled        
Keep a calendar of doctor, dentist appointments        
Know height, weight, birthdate        
Learn how to read a thermometer        
Know health emergency telephone numbers        
Know medical coverage numbers        
Obtain sex education materials/birth control if indicated        
Discuss role in health maintenance        
Have genetic counseling if appropriate        
Discuss drugs and alcohol with family        
Make contact with appropriate community advocacy organization        
Take care of own menstrual needs,keep record of monthly periods        
Community Skills        
Get around the city (pedestrian skills, asking directions)        
Use public transportation (taxi, bus, etc.)        
Locate bathroom in unfamiliar building (i.e. know how to ask)        
Know about neighborhood stores and services        
Use a pay phone        
Use a phone book        
Open a bank account        
Get a library card        
Get a picture ID        
Get  a Social Security Card        
Use Post Office        
Volunteer for community services        
Leisure Time Skills        
Help plan a party        
Invite a friend over        
Subscribe to a magazine        
Read a book        
Plan a TV viewing schedule        
Go for a walk        
Join the Scouts, YMCA/YWCA, 4-H Club        
Go to a recreation center        
Go to camp        
Attend school functions (plays, dances, concerts, sports)        
Go to Church        
Keep a calendar of events        
Participate in a sport        
Skills For The Future-Education        
Meet with school Guidance Counselor        
Check future educational options        
Vocational/Technical Options        
Contact school Guidance or DVR Counselor        
Check on local workshops/job opportunities        
Find out about apprentice programs        
Get information from community colleges        
Learn how to apply for a job        
Check on local workshops/job opportunities        
Find out about apprentice programs        
Get information from community colleges        
Learn how to apply for a job        
Living Arrangements        
Be aware of federal housing regulations for the disabled        
Explore group homes & tenant support apartment living programs        
Find out about financial assistance programs        
Learn how to manage money and budget household expenses        
Understand leases        
Know the responsibilities of a tenant & landlord        
Know how to fill out an application        
Check for wheelchair accessibility if needed        
Look into transportation        
Know about services: electricity, phone, water        




Special needs planning

The difficult but crucial steps parents must take to assure ongoing support and care for disabled children

Liza Burby is a freelance writer.

July 23, 2005

When Arline Corin lost her second husband in 1981, she worried that if something happened to her, there would be no one to care for her mildly retarded 25-year-old daughter.

"Though Ellen had recently been placed in a group home ... I still felt nervous that I, too, might die and not be there for her," says Corin, 79, of Bayside. "So I needed to ensure that someone would take over."

During the next several years, Corin took steps to make sure that Ellen's medical and financial needs would be met, even if Corin was unable to carry them out herself. After consulting with an attorney, she had her son, 57, appointed as his younger sister's standby guardian; provided him with a letter of intent to inform him of Ellen's specific needs to maintain her quality of life; and made plans to guarantee that her daughter's government benefits wouldn't be jeopardized by any inheritance.

"I feel much more at peace now that I know I've done all I can to care for her," Corin says of her daughter, now 50. "These are difficult decisions to make for your child. I learned what I needed to do for her from the support groups I attended. But even so, it took some doing because there's just so much to think about."


While people with congenital or acquired disabilities can expect near-normal life spans today - outliving their primary caregivers - many parents have yet to face the issues Corin did. According to a recent study by the MetLife insurance company, 29 percent of parents surveyed say they've taken "no action whatsoever" to make future financial plans for their special-needs children.

Yet estate planning should include extra measures to ensure that a special-needs person isn't thrust into a precarious position that affects his or her care and quality of life, says Bill Heslin, a specialist in Melville with MetLife's Division of Estate Planning for Special Kids, or MetDESK.

For instance, assets above $2,000 can disqualify an adult child from government benefits he or she is entitled to, such as Supplemental Security Income (which provides monthly payments for food, shelter and clothing) and Medicaid. But the MetLife study showed that 88 percent of parents haven't established a trust to preserve this eligibility and 72 percent haven't named a trustee to administer their child's finances.

Further, 53 percent of parents surveyed haven't named a guardian for their child in the event of their death. And if you don't appoint anyone to make financial or medical decisions for your child, or make arrangements for where the child will live upon your death, Adult Protective Services may have to be called in, says Steven Stern, a partner at Davidow, Davidow, Siegel & Stern in Islandia.

Impediments to action

Given the severity of potential consequences, it's somewhat surprising that parents don't take action - but it's also understandable, says Nadine Vogel, vice president and founder of MetDESK, based in Manhattan.

"Research showed that parents are at a loss where to go, so rather than make grave mistakes, they don't do anything," says Vogel, who has two young special-needs children. "And to consider these issues, you have to have an acceptance that your child won't be able to care for themselves. Most parents are in denial about that."

Sometimes, it's a matter of not having the time to plan, says Heslin, who has a 13-year-old autistic son. That's the case for the Clolerys of Richmond Hill, who have a 27-year-old son with Asperger's syndrome.

"I think planning is very important, and we're beginning to do that. But there are so many other fights every day when you have a special-needs child," says Olga Clolery, 58. "From the time he was little, we had to fight for every service he got, always one thing after another. Planning wasn't at the top of our list. You do so many other things just to make it through."

Preparing a financial plan for your child is a process of steps that doesn't have to be done all at once. Stern, who specializes in issues of guardianship and elder law, recommends first figuring out how you can care for your child if you need care yourself.

"The key to quality of life for a disabled child is financial security, and those approaching retirement age have to be aware that they'll have their own financial needs," he says. "Take an overall look at your estate to see if it will be sufficient to care for your child. In an overwhelming number of cases, the answer is no. The way to make up for that is to provide life insurance upon your death. Ideally, you plan this in advance of retirement because you'll need your money for your own needs."

Vogel says it's also important to begin to make alternate living arrangements if your child still lives at home. "Help them adjust to separations now so a shift to a residential or nursing home wouldn't be as traumatic for them," she says.

Another important step is establishing guardianship. Your child is automatically independent once he or she turns 18. But unless the child is high-functioning, you should apply in court to obtain guardianship of your adult child, says Terence E. Smolev, partner in charge of the trusts and estates department of Forchelli, Curto, Schwartz, Mineo, Carlino & Cohn LLP in Mineola. Guardianship can be of the person, the person's property or both, depending on your child's capabilities.

"A lot of people don't think of this, and if something happens to your child, you don't have legal authority to make decisions for their hospital or medical care," he says. "Especially with HIPAA [Health Insurance Portability and Accountability Act] privacy rules, without legal guardianship, you can't act on behalf of your adult child."

Irwin Polinsky, 71, of Fort Salonga, says that when it became clear about four years ago that his son Michael, now 32, was unable to act on his own behalf (he has high-functioning autism), he and his wife, Bernice, 65, petitioned the court for guardianship. "He isn't competent to make decisions about medication and doctors and so forth," he says. "As a result, we've been able to make decisions about critical surgeries and other medical care that he wouldn't have made on his own."

Stern says applying for guardianship is a simple process that's usually just a matter of filling out paperwork properly and going to either State Supreme Court or Surrogate Court.

In addition to naming yourself guardian, you should appoint a standby guardian to care for your child when you're no longer able to. You can do so when you apply for guardianship yourself or after the fact. A standby guardian isn't financially responsible for the person. But they do make medical and other life decisions to facilitate their care, according to Roberta Koenigsberg, director of legal affairs for YAI/National Institute for People with Disabilities in Manhattan.

Polinksy says when he and his wife became ill almost simultaneously a few years ago, they acted to name their younger son to be Michael's standby guardian. "We discussed it with him and he's willing and competent," Polinsky says. "And he has a good feel for what his brother needs."

In addition to guardianship, a parent's financial plan should include a special-needs trust - a legal document established to hold title to assets that will be used to provide for a child with a disability. This trust doesn't adversely affect eligibility for government benefits, and parents have a legal right to establish it.

"The purpose of the special-needs trust is to support the benefits, not replace them," Koenigsberg says. "The trust can be the difference in quality of life, like trips to see family members or to buy furniture."

Establishing trusts

According to Vogel, 92 percent of special-needs trusts are funded with some type of insurance. Michael Bolton, director of recreation services for United Cerebral Palsy of New York City, says that such assets as your house and investments can all be put into the trust, and you can put money in all along if you can afford it. But it isn't free to set up: Legal fees range from $1,000 to $5,000.

Establishing the trust is a two-step process. Stern says that first, you have to create the trust document through an attorney. Then you have to bring a copy of the trust to a bank and set up a special-needs trust account. That trust can be the beneficiary of your life insurance policy, and all assets you plan to leave your child should be transferred to this account. But in order for all this to happen, someone has to be appointed trustee of the account. The trust document will specify all the rights of the trustee, such as the ability to pay your child's expenses.

"It's very important to choose wisely," Stern says. "That person has to ... have financial savvy and some feel for the adult child's needs. They need to be capable of making the time and geographical commitment to the person. They should be someone who knows how to seek financial or legal assistance, if needed, and be able to find the right balance between using the trust and maintaining government benefits."

You can appoint the same person as a standby guardian and trustee, or you can have a family member or friend be the former, and, for a fee, appoint a professional like an accountant or attorney to be the trustee.

In order to keep the special-needs person's quality of life at the forefront of all decisions they make, the parent should prepare a letter of intent for the standby guardian and trustee, Bolton says. This letter, which you should make available to the standby guardian and trustee, can be a handwritten document stating the kind of life you want your child to have.

"Even if the person has a good idea of your child's daily schedule, write it down to make it as easy for them as possible," says Bolton, who has prepared one for his 17-year-old son, Justin, who has developmental disabilities.

Vogel says the letter of intent isn't a legal document, but you should have it witnessed, notarized and shared with whomever you've named as standby guardian and trustee.

For assistance with your financial plan, seek help from an elder law attorney who specializes in planning for children with special needs, or from support groups associated with your child's particular disability. Speaking with others who have been through these decisions is a good place to start, says Bernice Polinsky, who runs Advocates for Individuals With High-Functioning Autism, Asperger's Syndrome and Other Pervasive Developmental Disorders (, a Long Island support group. And know that all of these decisions and documents can be revisited if your situation changes.

"It's confusing," she says, "but you have to begin by asking what will happen if you're not around."

Getting help in planning for your child

Here are some resources to help parents plan for future needs of their disabled adult children.

YAI/National Institute for People with Disabilities. A not-for-profit health and human services organization that serves people with developmental and learning disabilities and their families in the New York metropolitan area. Originally called the Young Adult Institute for its focus on adolescents and young adults, the organization now serves people of all ages and provides community-based programs that include residential and day services, employment training and placement, family support services, certified home health care and recreation. For information, call 866-2-YAI-LINK or visit

Disabled and Alone: Life Services for the Handicapped Inc. For those who don't have family members who can become standby guardians or trustees for their disabled adult child, membership in this nonprofit, Manhattan-based organization provides your child with an advocate who can help with everything from the day-to-day care to medical appointments. Call 800-995-0066 or visit

The Special Needs Calculator. A free, interactive online tool from MetDESK, MetLife's Division of Estate Planning for Special Kids, helps parents begin financial planning by determining the amount needed to sustain a person with special needs throughout their life. The calculator compares anticipated cash flow and savings against projected future expenses, such as housing, education, medical and personal expenses. The final calculation determines the amount needed to secure the child's financial future and identify any expected shortfalls. If shortfalls do exist, the calculator directs parents to relevant additional resources, including a toll-free number, a local MetDESK specialist and nonprofit organizations. MetDESK is at For information, call 877-MetDESK.


Step by step

Don't know how to get started in planning for your child's financial future? Here's a quick step-by-step guide.

1. Determine your financial picture and where your adult child will live.

2. Make sure you have established guardianship of your adult child.

3. Appoint a standby guardian.

4. Establish a special-needs trust.

5. Appoint a special-needs trustee.

6. Open a special-needs trust at the bank.

7. Prepare a letter of intent for your child's care.

Copyright 2005 Newsday Inc.


Social/Sexual Awareness For Persons With Disabilities
Written by Geri Newton
Sexual awareness is normal. Sexual feelings are normal, and there are many ways of expressing one's sexuality. If a person has a disability, it does not change any of this. What often changes is the socialization that provides the foundation for sexual identity.
In America, people with disabilities are sometimes oppressed and treated as less than someone without an identifiable disability. This can have a profound impact on the individual's self-identity. Often, people with developmental disabilities feel they are bad or that something is wrong with them. By extension, they can feel that their normal sexual feelings are also bad or wrong. Humans' sexual drive is a primary drive; it is not optional. We have a sexual drive as long as we have enough to eat, drink, and sleep; and we are not under undue stress.
As parents, it is critical that we give our children a loving understanding of human sexuality. If we give them the message that their sexuality is precious and wonderful, then they will have some information with which to balance the rather conflicting messages they will likely receive from the dominant culture.
Children. In the early years, we give children information on being a boy or a girl. It is also helpful to give them correct names for their body parts including penis, vagina and anus. These terms should be taught using relaxed and open language.
Children will fondle themselves during early childhood. Not responding to this behavior is fine in the early years. If this behavior occurs during dinner or at Aunt Martha's birthday party, then distracting them without drawing attention is certainly appropriate. When they are old enough to be aware of others around them, saying to them: "I know that feels good and it is supposed to feel good, but it is also something that is special and private." This type of explanation would help them understand their sexuality. Whatever words you choose, they will best serve a child by imparting the notion that sexual feelings are wonderful and very personal. Bath time is also a good time to teach body awareness including the need to treat one's body with respect. Based on my experience, I believe this can be taught, regardless of the identified level of disability.
If we allow the child's disability to keep us from teaching these concepts, then we will leave him/her vulnerable. Just as children learn to eat, drink, sleep, and deal with fear, they can learn to express their sexuality. In fact, children need appropriate support to express themselves sexually; and this support includes information about appropriate boundaries and various ways to show regard for one's self.
Teenagers and Adults. By the time they move into their teens, they will experience changes in their bodies that are reflected in their sexuality. They will begin to experience orgasms. They will grow pubic and underarm hair. Overall body hair will change. A young man's voice will change. A young woman will begin to menstruate. Imagine going through these changes without knowing the names of body parts, without the preparation of anticipating change, and without the awareness that someone trusted is available if he/she has any questions. This type of information helps these individuals know that they are not "falling apart" and that they can ask questions. It is not enough to just wait and then tell someone "oh, by the way, ask if you have questions."
Around this time, young men and women may begin to masturbate. This activity can be engrossing after bringing oneself to orgasm the first time. This is normal and should not cause undue concern unless they are so engrossed that they are missing other parts of his/her life. In that case, it would be helpful to assist them in understanding balance in their activities. It may be as simple as letting them know that evenings and bedtimes are good times to masturbate, whereas daytimes are important to develop other interests.
This is a good time to explain further the function of body parts. For young men, explain to them why they cannot urinate with an erection, how a penis works, etc. For a young woman, explain to them where to find the clitoris and what it does, and why she menstruates. If a person has autism and experiences tactile defensiveness, masturbation may look different. The individual may rub harder or with short rapid movements, more like a grinding motion. It is important to determine if the person is still enjoying the sensation and not causing harm to him-/herself. If he/she is causing abrasion to the tissues, offering K-Y jelly or some other water-soluble lubricant may be helpful.
After a young woman begins menstruation, she is old enough for regular vaginal exams. Many will be terrified of these exams. Women with disabilities often need training on how to breath during an exam, how to relax the vaginal muscles, and how to be assertive with the physician in order to go through exams without being medicated. Women who do not speak can be taught to use gestures to tell the doctor to "stop" or "wait."
This is also the time when parents may begin to worry about pregnancy. In Oregon, we have a strict law regarding sterilization. This law came about because many women and men with disabilities were abused. It is nearly impossible now to sterilize a person with a disability. Good self-care and an understanding of one's sexual needs and responsibilities can keep a person as safe as possible under normal circumstances, but there will be times when concerns about pregnancy and/or sexual behaviors will result in the need for oral or other forms of contraception. As a result, many people have used chemicals to prevent pregnancy. Self-management techniques may also be useful when teaching appropriate sexual behavior.
Sexual abuse. Another important consideration is sexual abuse. Women are abused sexually at alarming rates. Women who have a disability appear to be abused even more. While accurate statistics are difficult to obtain, it is certain that all women and men with disabilities need to be aware of their healthy sexual options; and they need to know what to do if faced with sexual abuse or sexual contact that makes them uncomfortable.
It is important for people to understand that nothing they do makes someone abuse them. It is the perpetrator who makes the decision to sexual abuse. Therefore, when teaching people about how to say "No" to unwanted sexual contact, we must be sure to avoid giving the impression that they are responsible if they are abused. Nothing could be further from the truth.
In order to teach assertiveness, like saying "No," we have to stop teaching command compliance. We should teach negotiation, compromise, etc., but not compliance. We can also teach them to discriminate between reasonable and unreasonable requests, how to be assertive, and how to find an appropriate sexual partner. If we tell people that they cannot have sex, then we increase the risk that they will respond to their sexual feelings and not tell us. If they are abused, we may not know it unless we can spot the indicators.
It is important to help adults understand that if someone is trying to talk them into something without respecting their feelings or wishes, then the safest answer is "No." Sexual abuse is not about sex. Sexual abuse is about power. If we support people to define their own style of personal power, they are in a better position to understand someone who is trying to control them. A person who listens to the wants and needs of others is more likely a safe partner. We can teach this using role playing.
Many of my clients have told me that having sex with someone is the only time they feel normal. They have a job that they know a "normal" person would not have. They cannot drive. They are not free to go where they want, when they want. They always have to tell someone where they are and who they are with. They feel like they are treated like a child. Yet when they are sexual with someone, they are just like everyone else--a grown-up. I have received this same message from people with identified IQ's from 30 to 70, verbal and nonverbal.
Unfortunately, some people are victimized sexually because they value the feeling of sexual activity. If we can recognize the power of an abusive relationship because of one’s sexual feelings, we will be better able to support people in developing ways to discriminate respectful relationships that can grow and benefit both people.
Sexual relationships. It is important to teach the context for a sexual relationship. This starts to develop during the early teachings of how and where to masturbate; how to enjoy sexual expression; valuing self; showing respect for others and expecting respect towards self; learning to express emotions such as anger, sadness, and joy in ways that other people can understand; and developing a sense of style.
Adult men and women who have disabilities may or may not be aware of their own attractiveness and how they present themselves to others. Women who have a disability may want to shave their legs in the summer. Men may want to experiment with hairstyles. Both may want to decide what looks best on them. This may seem trivial, but it is important; it allows them to deal with the world.
Some individuals with autism may need specific instructions about social expectations. Some manners, ways of conversing, or sexual mores may not have meaning for them in the same way a person without autism might experience them. For these individuals, it is important to provide them with ample information about social rituals and boundaries. Role playing, discreet reminders when in public, and lots of practice are helpful.
People are sexual beings. It is not a choice or an option. It is a truth. The best sex education is a full awareness of social skills, boundaries, sexual expression, and expectations.
Geri Newton is a consultant in ethics, sexuality and therapeutic interventions. If you would like to contact Ms. Newton, her office number is: (503) 363-6347, and her mail is:

Adults with Asperger's Syndrome Often Go Undiagnosed

By IRENE CULLEN, Globe Correspondent

About one in 250 people has Asperger's Syndrome, a neurological disorder that affects one's ability to understand and respond to others' thoughts and feelings, according to clinical psychologist Tony Attwood. Yet, because research conducted by Hans Asperger in 1944 did not receive widespread attention until the 1990s, many adults with the disorder remain undiagnosed.

Those with moderate to mild Asperger's are most likely to have partners and children, and also are most able to hide their symptoms. Often, they only feel comfortable within the intimate relationships of a family, so others cannot see the struggles they and their families face.

"I call myself a translator between two different worlds," said Attwood, who is coauthor of a book on adults with Asperger's titled, "Making Friends and managing Feelings," which is due out next year. "I explain the world of the neuro-typical to the Asperger person, and the world of the Asperger to the neuro-typical."

These relationships resemble the blending of two cultures, Attwood said at an autumn workshop sponsored by Families of Adults Afflicted with Asperger's Syndrome in Centerville.  Attwood's upcoming book, written with Carol Gray, who invented "social stories", a key tool in educating children with Asperger's, takes a positive attitude toward working out the problems of adults with Asperger's.

Asperger's affects each person uniquely, Attwood said. It is composed of an array of qualities, in varying degrees. At the workshop, Attwood mapped out the characteristics, problems, and recommend strategies.  A profile of abilities common to Asperger's includes:

Codes of social conduct: "They are mind-myopic," Attwood said. "They can't know what other people are thinking or feeling. They are not badly brought up, or trying to upset you. They are just unaware of the social script. It is as if they were from another culture, and unaware of our norms."

Empathy: "When we look at empathy, it's very complicated. In a relationship with a partner, that is crucial--knowing when you need emotional support," Attwood said. Those with Asperger's may have trouble understanding a partner's feelings, and vise versa.

Friendship skills: "They may find it hard to meet peers on an equal level, be uninterested in friendship, or rely on their spouse for advice on office politics and teamwork," he said.

Characterization of people: They "may see others in black and white, as either likable or not, or be poor judges of character and get taken advantage of. The spouse must take his or her care-taking role seriously," he said.

Art of conversation: Neuro-typical people look for patterns when
communicating verbally to find the general meaning, he said, but "Asperger's people create their own pattern or, if they cannot, remember the whole message and may miss what is important."

Attwood noted that Asperger's may also be characterized by a strong desire for perfection, a special interest or talent, a fondness for routine, poor coordination, high cognitive skills, low organizational skills, and uneven processing of sensory input--being more or less sensitive than most.

Because neuro-typical people can understand another person's point of  view, he said, they can switch strategies or compromise to get along. With less social intuition and a reduced ability to pick up their body's internal physical signals associated with various feelings, people with Asperger's may have trouble managing their emotions. "They have fewer social-repair mechanisms in their toolbox, are predisposed to mood swings, and can eventually explode," Attwood said. "If they are not careful, anger is a major issue."

To learn social skills, people with Asperger's compensate for what they lack in intuition with their intellect, Attwood said. And sometimes that works.

"If the Asperger's person wants that relationship to work, they will  learn to do what they need to do to make it work. If they donít, whatever you try to teach them, they will not put to use," Attwood said.

Asperger people can use counseling effectively to help them learn about themselves, about how to compromise, to be open-minded, or to change their behavior to be more like others, he said.

What draws a neuro-typical person and someone with Asperger's together? Some strengths associated with Asperger's include:
  • strong ability in their career or special interest;
  • attention to detail;
  • conversation free of hidden meaning;
  • advanced vocabulary or general knowledge;
  • unique perspective in problem solving;
  • exceptional memory;
  • a sense of social justice; and,
  • practicality in issues of mortality and grief.

Partners may admire their intellect or abilities, have compassion for their limited social skills, believe that their character is due to childhood circumstances, share their interests, appreciate their fidelity or standing in the community, see them as creative or as a parent figure, and enjoy the degree of adulation they provide. For women, an Asperger's man may seem like the strong, silent type, Attwood said.

People with Asperger's, on the other hand, may be attracted to someone with a similar profile of abilities, a maternal woman or caregiver, or someone with strong opposite qualities such as flexibility and compassion.

Men may get into a more traditional marriage in which they play a dominant role, an arranged marriage, or relationship with someone from another culture. As for many couples, children create complications. But as it does for many parents, this can be one relationship that motivates people with Asperger's to overcome their limitations to make it work. One vulnerability is a lack of understanding of the natural stages of childhood development, because their own experience was different. They may want to let their partner act as a go-between or a diplomat on certain issues involving the children.

People with Asperger's also may feel a rivalry with children, because sacrificing their own needs does not come naturally. They may need to make an effort to show affection and emotional support, learn to tolerate some degree of messiness and noise, and try not to be too critical, Attwood said.

In social situations with friends and family, two-way misinterpretations of signals can occur, Attwood said. When the partner tries to talk about the situation, he or she may experience what Attwood called the Cassandra Phenomenon. In Greek mythology, Cassandra was given the gift of prophecy, but fated to have no one believe her.

"With Asperger's, life is a stage," Attwood said. "The curtain goes up while they are in public and down when they are at home. Because other people do not see the problem, they question your sanity--you are on your own. In some families, denial has held the family together for generations, and you want to bring down the scaffolding."  As a result, the neuro-typical partner may actually need more support than the one with Asperger's.

Therefore, contact with other partners through newsletters, a support group, or an Internet site is vital. "You cannot get this knowledge from professionals," Attwood said. He also recommended having an independent social life and an  occasional vacation apart.

Strengthening these unions requires vigilance and work--on both sides. Useful strategies include:

  • acceptance of the diagnosis as a difference not a defect;
  • motivation to change, family support, relationship counseling;
  • emotional-management strategies;
  • guidance in social skills; and,
  • open and effective communication.

Training and Education Resource Institute
Mission Statement
To improve the life quality for children and adults with developmental and learning disabilities and their families nationwide through research in treatment methodologies and the establishment of model programs which will set new standards for educational, therapeutic, and training services in this field.
Source url:

Alternative Living Arrangements
Bancroft NeuroHealth Neurobehavioral Stabilization Programs ~ Haddonfield NJ ~ This program is designed to help people (children and adults) with autism, brain injuries and other disabilities overcome severe behavioral problems through intensive treatment in a campus-based, secure residential setting. They combine behavioral anaylsis and neuropsychology to analyze and treat problem behaviors. This unique program offers a less expensive, more effective alternative to psychiatric hospitals, in a more natural, less restrictive environment.
Chileda Habilitation Institute ~ LaCrosse Wisconsin ~ Chileda is a home and treatment center for children and young adults who have developmental disabilities due to closed head injuries, seizure disorders, cerebral palsy, autism, behavioral and genetic liabilities and physical handicaps.
Devereux Foundation ~ Centers in Arizona, California, Chesapeake, Colorado, Connecticut, Florida, Georgia, Maryland, Massachusetts, New Jersey, New York, Pennsylvania, Texas and Washington ~ Helping Children and Adults
Independent Living
Indiana Developmental Training Center
Keystone Human Services is a family of nonprofit organizations working together to serve the community. Keystone is committed to creating an environment where all people can grow, make choices, and be valued and contributing members of society

Keystone Human Services
310 North Second Street
Harrisburg, PA, 17101
Phone: 717-232-7509
Fax: 717-232-4597


Agency Contact Information


Keystone Service Systems, Inc.
Charlie Hooker, CEO
310 North Second Street
Harrisburg, PA, 17101
Phone: 717-232-7509
Fax: 717-232-4597


Keystone Service Systems of North Central Pennsylvania
Patti Sipe, CEO
301 Arch Street, Suite A
Sunbury, PA 17801
Phone: 570-286-1757
Fax: 570-286-8578


Keystone Residence of Lancaster County
Robin Starry Fields, Executive Director
1891 Santa Barbara Drive, Suite 104
Lancaster, PA 17601
Phone: 717-581-8229
Fax: 717-581-0689


Keystone Residence
Michael Powanda, Executive Director
940 East Park Drive, Suite 100
Harrisburg, Pa 17111
Phone: 717-541-8322
Fax: 717-541-4354


Keystone Community Mental Health Services
Michael Grier, CEO
3609 Derry Street - 2nd Floor
Harrisburg, PA 17111
Phone: 717-558-8450
Fax: 717-558-9940


Key Service Systems
Mark Ritter, CEO
270 Farmington Avenue, Suite 220
Farmington, CT 06032
Phone: 860-409-7350
Fax: 860-409-7356


Keystone Children & Family Services
Joseph Manduchi, CEO
3700 Vartan Way
Harrisburg, PA 17110
Phone: 717-541-9620
Fax: 717-541-8108


Keystone Family Support Associates
Paula Davenport, Executive Director
801 East Park Drive
Harrisburg, PA 17111
Phone: 717-541-8248
Fax: 717-541-8603


Capital Area Head Start
Jo Pepper, Executive Director
3700 Vartan Way
Harrisburg, PA 17110
Phone: 717-541-1795
Fax: 717-541-8226


Susquehanna Service Dogs
Nancy Fierer, Program Director
3700 Vartan Way
Harrisburg, PA 17110
Phone: 717-541-9620
Fax: 717-564-8706


Keystone Services of Maryland
Michael Grier, CEO
359 Manchester St.
Westminster, MD 21157
Phone: 410-875-4694
Fax: 410-875-4699


Keystone Service Systems SouthEast
Michael Powanda, Executive Director
625 Ridge Pike, Building C, Suite 103
Conshohocken, PA 19428
Phone: 610-940-2650
Fax: 610-941-9477


Susquehana Intermediate Unit ~ The Central Susquehanna Intermediate Unit offers services that an individual school or organization may not be able to conduct as economically. Although our primary service area consists of Columbia, Montour, Northumberland, Snyder and Union counties in central Pennsylvania, the CSIU is ready to reach out to your school or organization regardless of your location
The National Center For Assisted Living (NCAL) is the assisted living voice of the American Health Care Association (AHCA), the nations largest organization representing long term care.
Therapeutic Alternatives, Inc. ~ North Carolina ~ TAI provides services for people with developmental disabilities, mental illness, and/or people who are elderly. The main office and assisted living facility, Brookstone Haven, is located in Randleman, NC.  At this time, they serve Davidson, Guilford, Randolph and Surry Counties with their Group Homes.

Please go to the "Assessment, IEP, Transitions and More" page for this very helpful list.


Living with LD

For Adults


Lifelong LD


Learning disabilities do not go away as a person matures and you do not grow out of your learning disability when you become an adult. You're also likely to face new challenges in fulfilling your role as a family member, employee, spouse or citizen.


This section was designed especially for adults like you. Use it as a guide to help manage the LD in different areas of your life. It will help you appreciate the risks as well as the positive consequences of living with LD as an adult. There's also advice on relationships and parenting, along with tips about building your own success story.


Being an adult with LD is about taking charge of your life. You'll have to find resources and make decisions that are right for you. But that doesn't mean that it has to be a difficult process. Our "For Adults" section will help you find the help you're looking for.


Risks and Rewards



Risks & Rewards

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Learning disabilities can affect skills in listening, thinking, speaking, reading, writing, mathematics and reasoning—skills that adults must use every day in fulfilling their roles as family members, employees and citizens. They may co-occur with, and be complicated by, problems in attention and social skills.


The experiences and hardships you may have had as a child with LD don't always go away during the adult years. In fact, they may hold you back from reaching your goals even though you may not recognize it.


Recognizing the risks and rewards of having a learning disability as an adult is the first step in learning how to manage your LD and lead a successful life. Below you'll find the possible risks of having a learning disability. Click the button at the bottom to see the rewards.*


The Risks

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Limited Educational Opportunities

Not all educators understand or are responsive to the needs of people with LD. When teaching methods are not appropriate, people with learning disabilities may become frustrated and experience failure. This may cause them to drop out of educational programs or make them afraid to enter other programs.


Limited Vocational Options

People with learning disabilities may have trouble finding and keeping a job. Often, limited literacy skills and poor organizational skills are the reasons. Some employers may not understand the nature of learning disabilities or know if they have a legal responsibility to provide reasonable accommodations.



Adults with learning disabilities may misinterpret others' gestures, facial expressions and tone of voice. They may have trouble responding appropriately in social situations. This may cause some adults with LD to be isolated from others, both at work and in their communities. Adults with LD may feel inadequate and incapable. They may remember being teased, criticized, or even rejected by their peers. As a result, they may have a poor self-image and lack the confidence to try new things.


Difficulty with Independent Living

Adults with severe learning disabilities may have difficulty with tasks such as writing checks, filling out forms, taking phone messages and following directions.


The Rewards

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Creative Problem-Solving

Adults with learning disabilities must learn to work around their disabilities. This experience allows them to think "outside the box," often leading to more creative solutions and imaginative answers to problems.


Outgoing Personality

Many adults with learning disabilities develop outgoing personalities in an attempt to compensate for their learning problems.


Strong Compensatory Skills

To make up for their learning disabilities, many people develop strong skills in other areas.



Often, people with LD do not give up when attempting a difficult task. Despite frustrations, they keep trying until they meet with success.



Persons with learning disabilities often provide support and understanding for others. Because they themselves have experienced the frustration that can result from having a learning disability, they can be that much more supportive of others.



  • Adapted from National Adult Literacy and Learning Disabilities [1999]. Bridges to Practice: A Research-based Guide for Literacy Practitioners Serving Adults with Learning Disabilities, Guidebook 1, pp. 27-30).

Successful Living

Adults with learning disabilities can make successful life adjustments and lead fulfilling lives. Take a look at some of the words and advice from adults who have built their own success stories:

Building Your Success Story

  • Recognize and accept the disability.
  • Understand the disability and how it affects your life.
  • Understand and value your unique strengths, talents and abilities.
  • Learn strategies and techniques to work around the disability.
  • Become goal-oriented and persistent in working toward achieving positive results.
  • Learn from failures and take action to change what's not working.
  • Have a social and psychological support system in the forms of family, friends, counselors, instructors and co-workers. 

In addition to taking advice from others, many adults with learning disabilities have learned to use assistive technology to help them be more successful and productive in school, at work and at home.

Success doesn't happen overnight. It's a continuous process of understanding your strengths and challenges, and then making adjustments as needed.




LD & Relationships


Learning disabilities present challenges to your personal life. A learning disability is a hidden disability, and, as a result, people close to you cannot see your disability. Sometimes, they may not fully understand the challenges you face every day. You should understand that some of your behaviors may cause problems for them. You also may need to work on how to better connect socially and emotionally with key people in your life.


This section will help you relate better in your personal relationships.


Being a Spouse/Partner With LD


Maintaining a long-lasting and satisfying relationship with a spouse or partner is challenging enough. But having a learning disability may make it even harder. You may want the relationship to be a stronger one, but you don't know how to make that happen. Some of the behaviors associated with your learning disability may annoy your partner. And your partner's criticism of you may have caused you to feel dissatisfied with the relationship.


Dependency can be a big issue when it comes to learning disabilities and relationships. You may both have different views about dependency and control. If you are overly dependent on your partner because of your LD, you may both grow tired of the "patient-caregiver" relationship. After a while, you may find that you are no longer emotionally attached to the relationship.


It may make you feel better to know that relationships are hard work for everyone. Having a satisfying, long-term relationship takes daily effort and both you and he/she need to be committed to this effort. The following are some tips that you and your partner/spouse may find useful:


Building a Stronger Relationship


    * You should have a good understanding of your strengths as well as your challenges.


    * You should understand how your disability affects your behavior and your ability to communicate.


    * Your partner/spouse should understand that learning disabilities could interfere with many aspects of everyday life.


    * You both should understand that some tasks might take you longer to do than they take other people.


    * Be as self-reliant as possible so that your partner does not feel overburdened or in a patient-caregiver relationship.


    * Explain to your partner about the accommodations you need. For example, if you have trouble following a series of directions and your partner asks you to do three things after dinner, reply with a direct statement, such as "Please write down what you need, or give me the directions one at a time."


    * Agree to trade-off household tasks so you handle the ones that you can comfortably do. For example, your partner/spouse may handle such tasks as paying the bills and balancing the checkbook and you may decide to do the grocery shopping.


    * Be open to improving your social skills. Ask your partner/spouse to give you feedback on things you should/should not do.


One of the most important ways you can maintain a healthy and long-lasting relationship is by practicing good, clear, open communication. The following are some pointers for building good communication.


    * Be direct and specific about your needs. Ask for what you need your partner to do; don't expect him or her to read your mind.


    * Avoid criticizing your partner's personality. For example, don't say "You're so messy!" or "You never listen to me!" or "You always think only about yourself!"


    * Try not to use "You" statements when there is a conflict. For example:


    * Your partner: "You were going to tidy up the living room, but there's still a bunch of papers and books lying around! Can't you ever finish anything that you start?"

      You: "You're never satisfied with anything I do!"


    * Instead, use "I" statements, such as the following: Your partner: "When I find the living room cluttered, I feel unsettled. I would appreciate it if you would pick up all the junk mail and books."

      You: "When you criticize my efforts, I feel bad. I'll be happy to put away the books, but I'll need to know if you want any of these catalogs before I throw them away."


    * Look at your partner/spouse when he/she is speaking. Pay attention to the gestures and facial expressions he/she uses. If you are not sure about what your partner/spouse has said, ask for clarification. For the two of you to have open and honest communication, you will both need to be sure that you understand what's being said.


If you and your partner want help in working through your communication problems and building a stronger relationship, you may consider seeing a family or marriage counselor. It is important to select a counselor who understands how learning disabilities can affect relationships.


Parenting With LD


For adults with reading, writing, or math learning disabilities, or those who have trouble staying organized and remembering things, parenthood can mean facing your learning challenges in a new way. If you struggle with these problems, it may affect your home life and even your child's behavior.


Parenting is an ever-changing role that challenges most adults, but the challenges you face as a result of your learning disability may affect your ability to manage your family's schedule, keep appointments, and relax enough to give your children your full attention.


Creating family routines and guidelines can help make everyday activities more manageable. For example, late afternoon and early evening can be particularly stressful times. This is the time when each family member is eager to share his or her thoughts and feelings from the school day or workday. This is also the time when homework, sports, music lessons, and other activities place demands on parents' time. Setting and keeping to a pattern or routine can make things easier on you.

Here are some tips than can help you and your family.


If You Struggle With Memory & Organization:


*Make sure your family has one calendar displayed in a central place like the kitchen.


          - Place all family members' important dates and appointments on this one calendar.


          - Make sure someone checks the calendar every day. Color-coding the appointments can help: assign each family member a color to help identify who has something scheduled each day.


          - Putting dates on the calendar can happen at the same time each day, such as after dinner or before bedtime.


    * Use reminders in notebooks to help your children remember to give you important notices from school. Keep the house (especially areas used for schoolwork) as organized as possible.


    * Teach your children to be responsible for their belongings and to stick to a plan for staying organized.


    * If your family has difficulty getting out of the house in the morning (and since mornings are rough for most people), do what you can to get belongings for school and everything needed for the morning routine organized the night before. For example, children can put their homework and anything they need for after-school activities in their backpacks and also pick out their clothes the night before.


These simple routines reduce stress for all family members and leave more time to find ways to help your child develop his or her special interests and talents—one of the real joys of parenthood.


Positive Parenting


All parents struggle to find ways to help children grow up to be happy and feel successful. Support groups can give parents an opportunity to share their concerns and learn positive parenting strategies. Local organizations like the YMCA or groups associated with your children's school often run parenting classes or parent support sessions that you can join. The key is knowing what causes your problems and then finding simple strategies to help you and your children get through the day successfully.





Assistive Technology

8630 Fenton Street, Suite 930
Silver Spring, MD 20910.
Tel.: (800)227-0216
Fax: (301)608-8958

Sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education; provides information on more than 27,000 assistive technology products, including detailed descriptions of each product, price and company information.

Alliance for Technology Access
2175 East Francisco Boulevard, Suite L
San Rafael, CA 94901
Tel.: (415)455-4575 or (800)455-7970
Fax: (415)455/0654

A network of community-based resource centers; provides information and support services to children and adults with disabilities and helps to increase their use of standard, assistive, and information technologies.

Center for Accessible Technology
2547 8th Street, 12A
Berkeley, CA 94710-2568
Tel.: (510)841-3224
Fax: (510)841-7956

Provides information and services supporting technology use and assessment of hardware and software for persons with disabilities; also builds the community's capacity to support the assistive technology user.

Center for Applied Special Technology (CAST)
39 Cross Street
Peabody, MA 01960
Tel: (978)531-8555
Fax: (978)531-0192

An educational, not-for-profit organization that uses technology to expand opportunities for all people, including those with disabilities; develops learning models, approaches and tools that are usable by a wide range of learners.

Closing the Gap
Computer Technology in Special Education and Rehabilitation
P.O. Box 68
526 Main Street
Henderson, MN 56044
Tel.: (507)248-3294
Fax: (507)248-3810

Provides information on the use of computer-related technology by and for persons with disabilities; provides referrals for students with disabilities; conducts annual conference on the use of technology to support students with disabilities.

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)
1700 North Moore Street, Suite 1540
Arlington, VA 22209-1903
Tel.: (703)524-6686

Dedicated to improving the potential of people with disabilities to achieve their goals through the use of technology; maintains listing of State Assistive Technology Programs. Services include an annual conference and publications.

The College Option

Association on Higher Education and Disability (AHEAD) University of Massachusetts- Boston
100 Morrissey Blvd.
Boston, MA 02125
Tel.: (617)287-3880
Fax: (617)287-3882

An organization of professionals committed to full participation in higher education for persons with disabilities; provides information resources and training on issues related to disabilities.

Educational Testing Service
Rosedale Road
Princeton, NJ 08541
Tel.: (609)921-9000
Fax: (609)734-5410

Provides information about ETS policies and procedures related to serving individuals with disabilities, including information about accommodations for Scholastic Aptitude Test (SAT) and Graduate Record Exam (GRE).

Federal Student Aid Information Center
P.O. Box 84
Washington, D.C 20044
Tel.: (800)433-3243

Provides information about student financial aid for college

The College Option Web Sites

Campus Tours
Provides links to web pages of hundreds of colleges and universities.

The College Board,,,00%2ben-USS_01DBC.html
Provides information on how to begin the college search, prepare for the Scholastic Aptitude Test (SAT), as well as helpful financial information on paying for college.

College NET
Provides descriptions, homepages and applications for numerous colleges and universities.

Common Application
Offers an online application form that is accepted by over 200 colleges in the U.S.
Contains articles and tools to help students select a college.

Disability Rights and Legal Assistance

ADA Information Line
U.S. Department of Justice
P.O. Box 66738
Washington, DC 20035-6738
Tel.: (202)514-0301 or (800)514-0301

Answers questions about Title II (public services) and Title III (public accommodations) of the Americans with Disabilities Act (ADA). Provides materials and technical assistance on the provisions of the ADA.

ADA Technical Assistance Programs
U.S. Department of Justice
950 Pennsylvania Avenue, NW
Washington, DC 20530
Tel/TTY: (800)949/4232

Federally funded regional resource centers that provide information and referral, technical assistance, public awareness, and training on all aspects of the Americans with Disabilities Act (ADA). Calls to the 800 number will be automatically routed to the technical assistance center in the caller's region.
Also provides information about the Americans with Disabilities Act (ADA) through a toll-free ADA Information Line: (800)514-0301 (voice); (800)514-0383 (TDD)

Disability Rights Education and Defense Fund (DREDF)
2212 6th Street
Berkeley, CA 94710-2219
Tel/TTY: (510)644-2555
Fax: (510-841)8645

A national law and policy center dedicated to protecting and advancing the civil rights of people with disabilities through legislation, litigation, advocacy, technical assistance and education and training of attorneys, advocates, persons with disabilities and parents of children with disabilities.

The ED LAW Center
P.O. Box 81-7327
Hollywood, FL 33081-1327.
Tel.: (954)966-4489
Fax: (954)966-8561

Provides information on special education law and offers listing of attorneys.

Equal Employment Opportunity Commission (EEOC)
1801 L Street, NW
Washington, DC 20507-0001
Tel.: (800)669-4000
TD (800)669-6820

Federal agency that provides assistance with discrimination complaints about employment.

Provides information about advocacy.

National Association of Protection and Advocacy Systems
900 Second Street, NE, Suite 211
Washington, DC 20002
Tel.: (202)408-9514
Fax: (202)408-9520

Protection and Advocacy (P&A) and Client Assistance Program (CAP) make up a nationwide network of disability rights agencies that provide literature on legal issues and referrals to programs that advocate for the right of people with disabilities. P&A agencies provide legal representation and other advocacy services to persons with disabilities. CAP provides information and assistance to individuals seeking or receiving vocational rehabilitation services under the Rehabilitation Act. Callers to the above number will be referred to P&A and CAP programs in their area.

Employment and Counseling Services

Job Accommodation Network (JAN)
West Virginia University
P.O. Box 6080
Morgantown, WV 26506-6080
Tel/TTY: (800)526-7234

Provides information about job accommodations and employment of persons with disabilities. Also provides information about the Americans with Disabilities Act (ADA) and the Rehabilitation Act of 1973. Offers individualized information packet to employers, rehabilitation professionals and persons with disabilities.

Mainstream, Inc.
6930 Carroll Avenue
Suite 240
Takoma Park, MD 20912
Tel.: (301)891-8777
Fax: (301)891-8778

Provides specialized services and links people with disabilities to employers and service providers.

Employment Web Sites

America's Job Bank

Useful both for job seekers and employers; offers job announcements, talent banks and information about getting a job.

Career Connections

Posts job announcements and an online application form, and hosts cyber job fairs.

Finding Your Career: The Holland Interest Inventory

Includes information on self-assessing one's skills and matching them to careers.

Marriott Foundation

Provides information on job opportunities for teenagers and young adults with disabilities.

Online Career Resources

Contains assessment tools, tutorials, labor market information, etc.

O*Net: The Department of Labor's Occupational Information Network

Useful for job seekers, employers and teachers; has career information and links to government resources.

Peterson's Education and Career Center

Contains postings for full-and part-time jobs as well as summer job opportunities.

GED Testing

General Educational Development (GED) Testing Service
American Council on Education
One Dupont Circle NW, Suite 250
Washington, DC 20036
Tel.: (202)939-9475

Provides information about the GED tests, test sites and application process.

Independent Living

Independent Living Research Utilization Program (ILRU)
2323 South Shepherd, Suite 1000
Houston, TX 77019
Tel.: (713)520-0232
TD (713)520-5136
Fax: (713)520-5785

A national resource center for information, training, research and technical assistance in independent living; produces and disseminates materials, develops and conducts training and publishes a monthly newsletter; provides a listing of Statewide Independent Living Councils (SILCs) in each state.

National Council on Independent Living (NCIL)
1916 Wilson Boulevard
Suite 209
Arlington, VA 22201
Tel.: (703)525-3406
TTY: (703)525-4153
Fax: (703)525-3409

Provides referrals to independent living facilities around the nation; advocates for the human rights of, and services for, people with disabilities to further their full integration and participation in society.

Literacy Programs

National Institute for Literacy (NIFL)
1775 I Street, NW, Suite 730
Washington, DC 20006-2401
Tel.: (202)233-2025

Works to build and strengthen a comprehensive, unified system for literacy in the U.S. Maintains a national literacy hotline ((800)228-8813) that provides information about local and state literacy programs.

Special Education

Office of Special Education Programs
U.S. Department of Education
330 C Street, S.W.
Mary E. Switzer Building
Washington, DC 20202
Tel.: (202)205-5507

Administers programs and projects relating to the free appropriate public education of all children and young adults with disabilities, from birth through age 21; provides information and publications about disabilities and special education.

Special Education Resources on the Internet

Contains links to information about definitions, legal issues, and teaching and learning related to learning disabilities.

Study Skills

Study Skills Web Site
Contains information on developing study skills for high school students.

Support Networks

American Coaching Association
P.O. Box 353
Lafayette Hill, PA 19444
Tel and Fax: (610)825-4505

Links people who want coaching with people who do coaching; coaches help individuals to set goals, accept limitations and acknowledge strengths, develop social skills and create strategies that enable them to be more effective in managing their day-to-day lives.

Support Networks Web Sites

LD Pride
Provides information about learning disabilities and offers support through bulletin boards and chat services.

Peer Assistance Leadership (PAL)
A California-based outreach program for elementary, intermediate and high school students.

Peer Resources Network

A Canadian organization that offers training, educational resources, and consultation to those interested in peer helping and education. Their resources section has information on books, articles and videos.

Teens Helping Teens

A resource site for teens operated by students with dyslexia; provides information about the disability, study tips and a support network.

General Information

Clearinghouse on Disability Information
Office of Special Education and Rehabilitative Services (OSERS)
U.S. Department of Education
330 C Street, SW
Mary E. Switzer Building
Washington, DC 20202-2524
Tel.: (202)205-8241

National Information Center for Children and Youth with Disabilities (NICHCY)
Academy for Educational Development
P.O. Box 1492
Washington, DC 20013-1492
Tel/TTY: (800)695-0285

A national information and referral center; provides information on disabilities and disability-related issues to families, educators and other professionals, with a special focus on children and youth (birth to age 22).

General Information Web Sites

Disability Direct

Provides one-stop online access to resources, services, and information available throughout the federal government to Americans with disabilities, their families, employers and service providers; also promotes awareness of disability issues to the general public.

LD Online

A rich source of information about learning disabilities; has links, chat rooms and books for consumers, educators, counselors and students.

Roads to Learning

Run by the American Library Association, this site works to raise public awareness about learning disabilities.  


Volunteer Services

The value of involving students with and without disabilities in volunteer and community service activities has received increasing attention in recent years. Participation in volunteer activities has been linked to increased engagement in democratic processes, lowered likelihood of dropping out, improved transition from school to work, and improved educational attitudes and performance.

Typically, youth with disabilities have been seen as the recipients of philanthropic services rather than as providers of such services themselves. However, voluntary service, community service, and service learning offer many possibilities for youth with disabilities. They can contribute to their communities and experience the resulting benefits -- opportunities to learn, work experience, a sense of belonging, and respect. Such service also promotes full participation of people with disabilities in society.

Students get a chance to apply academic skills to a work or volunteer setting and develop relevant soft skills such as teamwork and time management. Getting involved in meaningful activities outside the classroom helps students feel more committed to their education, making them more likely to stay in school. l In addition to exploring potential careers, students develop networks that can help them find employment. Students with disabilities have an opportunity to assess the impact of their disability in employment or volunteer settings and consider issues such as disclosure of a disability and job accommodations.

Volunteerism & Service Learning Links:



Stages of Responsibility

Practical Suggestions for Responsibilities
You Can Expect Your Child to Begin at Specific Ages
(Dependent in the early years on
verbal/motor development)

Ryan says to his mother as he's running out the door, "Mom, I'm late for basketball practice. Would you please do my homework for me?" The teen's mother says, "No, son, it just wouldn't be right." "That's okay," replies the boy. "At least you could try."

We have failed to teach responsibility in our homes. Children expect others to do for them -- including homework. ;>

The word "responsibility" or "responsible" occurs over 60 times in the Bible. Being responsible and handling responsibility should be a character trait that is foundational to every Christian, because it is closely connected to the ideas of industry and faithfulness. Since our God is so hard working and faithful, i.e. responsible, in everything He does and promises to do, surely we as Christians should exemplify the same characteristic.

Many "Baby Boomers" were never trained to be responsible and hence they have failed to teach this important characteristic to their children. As a result children grow up without this godly characteristic and so they lack this essential characteristic for success. Both the physical world and the spiritual world require responsibility to succeed.

If we teach out children responsibility in the home, it will have the following beneficial effects:

  1. Our children will become responsible. They will be more of a joy to live with at home.

  2. Because responsible children are such a unique commodity in today's society, our children will be sought after for babysitting, lawn mowing, and other employment opportunities outside the home.

  3. Parents will find themselves with more energy, because they are doing less tasks that now are being done by their children.

  4. Because the home runs more smoothly with less stress, parents will be able to consider the option of having a larger family.

Responsibility should be taught at an early age. There are tasks which teach responsibility that even an infant can accomplish. What follows is a list responsibilities -- tasks which teach our children to be responsible, productive, and helpful. Take look at the list. Are your children learning responsibility in your home? (The following list is cumulative, that is, each age level should include the responsibilities prior to it.)

9 - 24 months

  • Putting dirty clothes in hamper.
  • "Helping" with grocery shopping (putting items in basket and on check-out counter, handing things to mom to be put away at home.)
  • Cleaning with mom (give child a dust rag, child size broom, empty spray can/windex bottle for "pretend" cleaning).
  • Watering plants (with pre-measured amounts!).
  • Beginning to help make beds - (begins with handing the pillows to mom until later).
  • Yard work (helping collect trash and toys, etc.).
  • Simple errands ("bring the diaper to mommy, please," etc.).

2 - 3 years

  • As language develops, requiring politeness on a regular basis ("Yes ma'am", "No sir", "May I please be excused", greeting, etc.).
  • Generally including child in every-day activities on a regular basis (cleaning, shopping, etc.).
  • More complicated errands ("Take this towel and put it in the hamper", etc.).
  • Laundry (beginning to help with sorting by mom handing him things to put in appropriate piles, transferring clothes from dryer to basket, etc.).
  • Learning more specific neatness qualities (putting toys in proper spots).
  • Taking his dishes to the sink and helping to clear table.
  • Carrying groceries in from car (give child one light item or a small bag).
  • General errands (carrying diaper bag into meeting, carrying mom's purse to the car, etc.).
  • Simple decision-making ("Would you like juice or milk to drink?").
  • Put books and magazines in a rack.
  • Place napkins, plates, and silverware on the table.
  • Clean up what they drop after eating.
  • Toilet training.

3 -4 years

  • Making bed (begins with watching mom -- mom helping child -- mom watching child) standards must be clear and reminders frequent.
  • Keeping room neat and taking daily responsibility for it.
  • Regular morning routine becoming established (getting dressed, cleaning room before breakfast).
  • More complex decision-making ("Would you like to wear the blue or green pants?").
  • Becoming "other-oriented" (drawing pictures for someone, making encouragement notes to dictate to mom, thank you notes for birthday gifts).
  • Learning to use the telephone properly.
  • Established and regular responsibilities (bedroom, getting the mail, emptying bathroom trash cans, etc.).
  • Helping wash the car.
  • Simple hygiene - brush teeth, wash and dry hands and face, and brush hair.
  • Undress self - dress with some help.
  • Carry boxed or canned goods from the grocery sacks to the proper shelf.

4 - 5 years

  • Taking his laundry to designated place on laundry day.
  • Sorting laundry with supervision.
  • Begin learning to fold laundry and put it away.
  • Hang socks, handkerchiefs, and washcloths on a low line.
  • Vacuuming/sweeping.
  • Cleaning table after meals.
  • Helping with meal preparations (learning to measure, stir and use small appliances).
  • Spread butter on sandwiches.
  • Prepare cold cereal.
  • Help mother prepare plates of food for the family dinner.
  • Make a simple dessert (add topping to cupcakes, pour the toppings on ice cream).
  • Hold the hand mixer to whip potatoes or mix up a cake.
  • Setting the table.
  • Taking out the trash.
  • Helping make decisions about meal choices, outings, time with friends, etc.
  • Carrying groceries in from the car and putting them away.
  • Help with grocery shopping and compiling a grocery list.
  • Polish shoes and clean up afterwards.
  • Follow a schedule for feeding pets.
  • Help do the dishes or fill the dishwasher.
  • Dust the furniture.
  • Share toys with friends (practice courtesy).
  • Tell parent his whereabouts before going out to play.
  • Play without constant adult supervision and attention.
  • Polish silver.
  • Polish car.
  • Sharpen pencils.

5 - 6 years

  • Unsupervised responsibilities (making bed, washing out trash cans, etc.).
  • More complicated meal preparations (making frozen juice, toast, scrambling eggs, cutting with blunt knife, baking).
  • Make own sandwich or simple breakfast, then clean up.
  • Pour own drink.
  • Prepare the dinner table.
  • Tear up lettuce for the salad.
  • Helping with younger siblings (changing diapers, helping with bath, bottle feeding, entertaining while mom is out of the room, feeding/dressing toddler siblings).
  • Laundry (sorting, learning to use the washer/dryer, measuring detergent,fold clean clothes and put them away.) .
  • Cleaning (using cleaning supplies properly, cleaning unsupervised areas like bathtub or polishing furniture, clean mirrors and windows).
  • Sons -- carrying "heavy" things for mom and helping with yardwork.
  • By this time child will begin to carry out responsibilities unasked and begin to offer help in areas parents don't require help in.
  • Make bed and clean room.
  • Dress on own and choose outfit for the day.
  • Learn to tie shoes.
  • Answer the telephone and begin to dial the phone.
  • Yardwork.
  • Pay for small purchases.
  • Help clean out the car.
  • Take out the garbage.
  • Decide how he wants to spend his share of the family entertainment fund.
  • Feed his pets and clean the living area.

6 - 7 years

  • Simple meals prepared (making sandwiches for lunch, preparing drinks, fixing breakfast for mom and dad, preparing salad for dinner, peel vegetables).
  • Regular quiet time becoming a part of daily routine.
  • Totally unsupervised laundry responsibilities when needed.
  • Increased responsibilities for younger siblings (dressing infants/toddlers, entertaining them for longer periods by reading to them/playing records, etc., helping school them).
  • Learning the purpose and beginning usage of tools (lawn mower, hand tools, etc.) and helping with home maintenance.
  • Shake rugs.
  • Water plants and flowers.
  • Prepare own school lunch.
  • Help hang clothes on the clothesline.
  • Hang up own clothes in the closet.
  • Gather wood for the fireplace.
  • Rake leaves and weed.
  • Tie own shoes.
  • Care for his own minor injuries.
  • Keep the garbage container clean.
  • Clean out inside of car.
  • Straighten or clean out silverware drawer.
  • Oil and care for bike.
  • Take phone messages.
  • Run errands for parents.
  • Sweep and wash patio area.
  • Water the lawn.
  • Wash dog or cat.
  • Train pets.
  • Take pet for walk.
  • Carry in the grocery sacks.
  • Get self up in the morning and go to bed at night on own.
  • Learn to be polite, courteous, and to share; respect others.
  • Carry own lunch money and notes back to school.
  • Leave the bathroom in order.
  • Do simple ironing.

8 - 10 years

  • Complete responsibility for their rooms on a daily basis (bed making, dresser drawers, closet, vacuuming, etc.).
  • Unsupervised yard work (i.e., lawn mowing, edging, clean-up, gardening).
  • More complex meal preparations (pour and make tea, coffee, and instant drinks, using sharp instruments, baking, using appliances, beginning meal planning).
  • More difficult cleaning projects (scrubbing kitchen floor, windows, cleaning appliances).
  • Summer jobs (lawn mowing, dog sitting, babysitting, odd jobs for vacationers).
  • Financial planning (computing percentages for saving, tithing, offerings, gift-giving and assuming responsibility with parental oversight).
  • Beginning car maintenance (helping dad with minor repairs, learning tool usage, washing/waxing).
  • Help rearrange furniture. Help plan the layout.
  • Run own bathwater.
  • Help others with their work when asked.
  • Shop for and select own clothing and shoes with parent.
  • Change school clothes without being told.
  • Fold blankets.
  • Sew buttons and sew rips in seams.
  • Clean storage room.
  • Clean up animal "messes" in the yard and house.
  • Cut flowers and make a centerpiece.
  • Pick fruit off trees.
  • Build a campfire, get items ready to cook out (charcoal, hamburgers).
  • Paint fence or shelves.
  • Help write simple letters.
  • Write thank-you notes.
  • Help with defrosting and cleaning the refrigerator.
  • Feed the baby.
  • Polish silverware, copper, or brass items.
  • Clean patio furniture.
  • Wax living room furniture.
  • Change sheets and put dirty sheets in hamper.
  • Buy groceries using a list and comparative shopping.
  • Cross streets unassisted.
  • Keep own appointments.
  • Receive and answer own mail.
  • Wait on guests.
  • Plan own birthday.
  • Simple first aid.
  • Do neighborhood chores.
  • Sew, knit, or weave (even using a sewing machine).
  • Do chores without a reminder.
  • Learn banking and to be thrifty and trustworthy.
  • Handle sums of money up to $5.00.
  • Be alone at home for short periods.
  • Take the city bus to selected destinations.
  • Proper conduct when staying overnight with a friend. Pack own suitcase.
  • Responsible for personal hobby.
  • Handle self properly when in public places alone or with peers.

11 - 12 years

  • Join outside organizations, do assignments, and attend. Able to take responsibility as a leader.
  • Put siblings to bed and dress them.
  • Clean pool and pool area.
  • Respect others' property.
  • Run own errands.
  • Mow lawn with supervision.
  • Help Father build things and do family errands.
  • Schedule himself time for studies.
  • Buy own sweets or treats.
  • Responsible for a paper route.
  • Check and add oil to car under supervision.

13 - 15 years

  • Determine how late he should stay up during the week. Also determine how late he should be out for evening gatherings (through mutual parent-child discussion and agreement).
  • Responsibility for preparing family meals.
  • Social awareness: good health, exercise, necessary rest, correct weight, nutritious food, physical examinations.
  • Anticipate the needs of others and initiate the appropriate action.
  • Acceptance of capabilities and limitations.
  • Self-respect or individual worth.
  • Responsibility for one's decision.
  • Mutual respect, loyalty, and honesty in the family.

For a chore chart showing how to execute some of these stages of responsibility click here.

Source url:

National Center on Secondary Education and Transition

Information Brief

Addressing Trends and Developments in Secondary Education and Transition

March 2004 • Vol. 3, Issue 2

Supporting the Dynamic Development of Youth with Disabilities During Transition: A Guide for Families

By Kris Peterson


The physical and emotional changes in adolescence are comparable in complexity to the developmental phases of infancy and early childhood. The level of knowledge and skills needed by young adults in order for them to thrive in their communities is increasing. At the same time, youth may experience decreasing structure and support in their lives as they seek to build the skills necessary for success (Simpson, 2001; Larson, Brown, & Mortimer, 2002).

Family support is key to healthy adolescence. A family enables children to experience attachment, belonging, competence, and self-esteem, and at the same time allows them to experience success and failure, adventure and retreat, independence and interdependence. For families who have teens with disabilities, adolescence can be especially challenging. This brief provides information about healthy adolescent development for youth with disabilities, focusing on the role of parents and families in supporting the successful transition to adult life.

The Predicament of Parents and Families

Parents, whose roles include providing for and protecting their children, often find themselves at odds with the teen who wants to experience life, develop individual values, and achieve independence (Tempke, 1994). When a child is vulnerable, families may view control as a responsibility to ensure safety. Families may have extensive fear of how the world will treat their child, or they may hesitate to give up their primary role as protector and advocate. In spite of this, teens with disabilities want and need to experience and obtain the same things that all adolescents want and need no matter how significant their disability.


Transition assessment and planning occur during adolescence, yet often in the search for academic and career development the vital elements of psychological, social, emotional, and sexual development may be overlooked. Gerber and Okinow (1994) assert that the environment is crucial for these youth:

Adolescents with chronic illness or disability experience the same developmental transitions as their peers without disabilities, yet their illness or disability places them at risk for certain psycho-social problems as they move into adulthood. The risk is not solely in the medical complications of the illness or disability...rather risk is more often related to the degree of fit between the adolescent and his or her environment: family, school, peers, health care services, work, and societal attitude. The fit can lead to optimal integration and development, or it can result in isolation and low self-esteem (p.1).

LoConto and Dodder (1997) asked people with developmental disabilities, “If you could wish for anything, what would it be?” The majority response was that they wanted the same things that all people want: material goods, a home of their own, emotional and intimate connections, vacations and leisure, and a way to feel useful. So often the focus for youth and adults with disabilities is safety and physical health at the expense of a valued social role and the need for human connections.

The parent/child relationship is strongly related to adolescent well-being. Parents’ vision for the future of their children is that they will grow up, move away, and develop lives of their own (Hanley-Maxwell, 1995). Having a child with a disability, however, may seriously threaten this vision. Although families may be able to adapt, build resilience, and develop greater emotional growth and togetherness as a result of the disability, they may also experience an on-going stress as they move through the life cycles of their own development and that of their child (DeMarie & LeRoux, 2002). Some families cope with the stress by dealing with the present moment and not thinking about the future of a child with a disability. They may have experienced many disability-focused assessments and programs, resulting in little vision of independence or quality of life for their child.

Most families also experience a loss and undergo a grieving process when they have a child who is born with, or acquires, a disability (Seligman & Darling, 1997). No matter what the disability, families find themselves in “uncharted emotional territory with no guides to direct them toward ways to express their grief in a culturally acceptable format” (DeMarie & LeRoux, 2002). For some families, the chronic care needs of a child with a disability can be overwhelming and never-ending. For those who have a child with a disability, pivotal milestones such as graduation from high school can trigger stress, grief, or fears that impede a vision of normal adulthood.

In addition, the social effects of a disability also impact the parent/child relationship and family dynamics. Families may respond by becoming strong advocates or by defending and fighting for supports and services. This role can become part of their core identity and may be difficult to relinquish when the time comes to transfer advocacy responsibilities to the teen with a disability.

Meeting the Challenges: What Can Families Do?

It is important for teens with disabilities and their families to have information from physicians, teachers, social workers, and other families about adolescent development, and to receive encouragement to create a vision of adulthood (see Table 1). It is also vital that they experience opportunities to share their dreams and hopes, fears and frustrations, and to dialog about their visions for the future. Autonomy, independence, problem-solving, and constructive role-related changes will increase if families can build safety nets amid the fear of life-threatening decisions and risk-taking that are part of the teen experience.

The National 4-H Council has identified eight “Keys for Kids” based on the work of Konopka (1973) and Pittman (1991):

  • Security: Youth feel physically and emotionally safe (“I feel safe.”)
  • Belonging: Youth experience belonging and ownership (“I’m in.”)
  • Acceptance: Youth develop self-worth (“What I say and do counts.”)
  • Independence: Youth discover self (“I like to try new things.”)
  • Relationships: Youth develop quality relationships with peers and adults (“I care about others.”)
  • Values: Youth discuss conflicting values and form their own (“I believe...”)
  • Achievement: Youth feel the pride and accountability that comes with mastery (“I can do it.”)
  • Recognition: Youth expand their capacity to enjoy life and know that success is possible (“I feel special.”)

Adolescent development is more than high academic expectations, career development, and independence. Families play a pivotal role in supporting teens to explore their identities and make connections with peers and other adults. Understanding all aspects of adolescent development helps families of youth with disabilities and those who work with them to address these critical issues and improve adult outcomes.

Table 1. Information Parents and Families Need

Families, their teens with disabilities, and the professionals who support them will benefit from information about normal adolescent development and the parent/child relationship. Since transition planning supports a person-centered, holistic approach to life planning, it is helpful to examine the concept of "development" within the process. Highlights from extensive research and literatures on adolescent development and parent/child relationships include:

Three developmental stages (Rapp, 1998)

  1. Early adolescence (12-14): peer groups, emotional distance from parents, rapid growth, interest in sex;
  2. Middle adolescence (14-17): self-discovery, performance orientation, vital relationships; and
  3. Late adolescence (17-19): career focus, physical distance from parents, self-sustaining living.

Eight developmental tasks (Havighurst, 1972)

  1. Achieving new and more mature relations with age-mates of both sexes,
  2. Achieving a masculine or feminine social role,
  3. Accepting one’s physique and using the body effectively,
  4. Achieving emotional independence from parents and other adults,
  5. Preparing for marriage and family life,
  6. Preparing for an economic career,
  7. Acquiring a set of values and an ethical system as a guide for behavior, and
  8. Desiring and achieving socially responsible behavior.

Core developmental tasks (Elliot & Feldman, 1990)

  • Becoming emotionally and behaviorally autonomous,
  • Dealing with emerging sexuality,
  • Acquiring interpersonal skills for dealing with the opposite sex and mate selection,
  • Acquiring education and other experiences needed for adult work, and
  • Resolving issues of identity and values.


Internal and external developmental assets
(Search Institute, 2003)
Internal Assets
Achievement motivation
School engagement
Bonding to school
Reading for pleasure
Equality and social justice
Planning and decision making
Interpersonal competence
Cultural competence
Resistance skills
Peaceful conflict resolution
Personal power
Sense of purpose
Positive view of personal future

External Assets
Family support
Positive family communication
Other adult relationships
Caring neighborhood
Caring school climate
Parent involvement in schooling
Community that values youth
Service to others
Family boundaries
School boundaries
Adult role models
Positive peer influence
High expectations
Creative activities
Youth programs
Religious community
Time at home

Essential requirements for healthy adolescence (Carnegie Council on Adolescent Development, 1995)
  • Find a valued place in a constructive group;
  • Form close, durable relationships;
  • Feel a sense of personal self-worth;
  • Know support systems and how to use them;
  • Show constructive curiosity;
  • Find ways of being useful to others;
  • Acquire technical and analytical ability to participate in a global economy;
  • Believe in a promising future with real opportunities;
  • Master social skills and conflict resolution habits;
  • Cultivate problem-solving habits;
  • Achieve a reliable basis for making informed choices;
  • Become an ethical person;
  • Learn responsible citizenship; and
  • Respect diversity.

Ages and Stages, Similarities and Differences: When Your Child has Special Needs

Children don’t come with a user’s manual, and more often than not, parenthood often seems like a land with no clear roadmap....There is increasing separateness while the connection is held onto, and parents must figure out the right amount of involvement in their child’s everyday life. The parent is more and more aware of the child’s individuality. Interpreting the world also involves setting standards for behavior in the world outside the home.

As difficult questions come up, parents are impelled to re-examine and perhaps revise their own theories of childrearing and parenthood. Over a period of several years images of the future are formed. If there are developmental challenges, this process can be much more involved. A child with special needs will have an Individual Educational Program (IEP); may be in special classes; and may have complex medical issues, engage in numerous therapies, and need medications. Cognitive development may be slower and more difficult. The road will have more twists and turns, and the emotional terrain may be even more difficult to handle.

With the teen years, there is the onset of the Interdependent Stage, which can be extremely turbulent as teenagers challenge parents’ authority. Emotional highs and lows are not far apart. Strong feelings are stirred up in parents. As their [youths’] bodies change with the dawn of their emerging sexuality, parents have to think about their authority relationship with their almost adult child. Because teenagers are by developmental necessity absorbed in themselves, they can be disrespectful, testing, worrisome, and upsetting to their parents. Parents must learn to talk less and leave the door open because their children still need them but on new terms. Limit-setting and guidance are still needed but must be based on the particular child’s needs.

More than ever parents must understand the deep passions that are evoked in this stage. Particularly challenging is accepting their child as a sexual being. As the separate identity is formed, separation brings feelings of envy, fear, anger, pride, and regret. Parents of children with special needs confront the reality of how far their child may be different from the norm once again, and may have special fears about their child being taken advantage of in the world. Overall, this further redefinition of the parent-child relationship brings to all parents the image of life without children at home which now looms on the near horizon.

The Departure Stage is something parents have thought about ever since their eyes first met those of their newborn. Now parents are faced with taking stock of the whole experience of parenthood. They redefine their identity as parents with grown-up children. The parents of children with special needs face the possibility that their children can never live independently and may live with them for the rest of their lives or in a community living arrangement with supports. But for all parents, it is clearer than ever that our job is never done for we are parents the rest of our lives, but our roles with our adult children are different.

At this point, parent and child alike waving good-bye to childhood and looking out to adulthood, with wobbly knees, I might add, from my own experience with my 22-year-old son with autism. We don’t know yet what the future holds for living and working. It’s a scary thought when your child is young. How do we get there? This may be far from what we imagined before our child, whether typical or not, was born. Nonetheless, through acceptance and courage and endurance, the road through parenthood brings peace and love. Our special children truly light the way and help us find the inner strength and wisdom we need.

From Ages and stages, similarities and differences: When your child has special needs, part 2, by R. Naseef, 2003, Copyright 2003 by Robert Naseef. Adapted with permission.


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Blum, R., & Mann Rinehart, P. (1997). Reducing the risk: Connections that make a difference in the lives of youth. Minneapolis: University of Minnesota.

Carnegie Council on Adolescent Development. (1995). Great transitions: Preparing adolescents for a new century. New York: Carnegie Corporation, Task Force on Youth Development and Community Programs.

DeMarie, D., & LeRoux, P. (2002). The life cycle and disability: Experiences of discontinuity in child and family development. Retrieved July 28, 2003 from

Elliott, G., & Feldman, S. (1990). At the threshold, the developing adolescent. Cambridge, MA: Harvard University Press.

Gerber, G., & Okinow, N. (1994). Reconsidering a generation of youth, research, and knowledge. Connections: The Newsletter of the National Center for Youth with Disabilities, 4(4), 1.

Havighurst, R. (1972). Developmental tasks and education (3rd ed.). New York: David McKay.

Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. (1995). The second shock: A qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life. Journal of the Association for Persons with Severe Handicaps, 20, 3-15.

Konopka, G. (1973). Requirements for the healthy development of adolescent youth. Adolescence, 8(31), 2-25.

Larson, R., Brown, B., & Mortimer, J. (2002). Adolescents’ preparation for the future: Perils and promise. The Journal of Research on Adolescence, 12(1).

LoConto, D., & Dodder, R. (1997). The right to be human: Deinstitutionalization and the wishes of people with developmental disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 32(2), 77-84.

Naseef, R. (2003). Ages and stages, similarities and differences: When your child has special needs, part 2. Retrieved January 4, 2005, from

Pittman, K. (1991). Promoting youth development: Strengthening the role of youth serving and community organizations. Washington, DC: Academy for Educational Development, Center for Youth Development and Policy Research.

Rapp, M. (1998). Adolescent development: An emotional roller coaster. In M.A. Nichols & C.A. Nichols (Eds.), Young adults and public libraries (pp. 1-10). Westport, CT: Greenwood.

Search Institute. (2003). Forty developmental assets. Retrieved July 28, 2003, from

Seligman, M., & Darling, R. (1997). Ordinary families, special children: A system approach to childhood disability (2nd ed.). New York: Guilford.

Simpson, A.R. (2001). Raising teens: A synthesis of research and a foundation for action. Boston: Harvard University, School of Public Health, Center for Health Communication.

Tempke, M. (1994). Living with your teenager: Understanding the changing parent-teen relationship. Durham: University of New Hampshire, Cooperative Extension.

Further Reading

Ferber, T., Pittman, K., & Marshall, T. (2002). State youth policy: Helping all youth to grow up fully prepared and fully engaged. Takoma Park, MD: The Forum for Youth Investment (

Yohalem, N., & Pittman, K. (2001). Powerful pathways: Framing options and opportunities for vulnerable youth. Discussion paper of the Youth Transition Funders Group. Takoma Park, MD: The Forum for Youth Investment (

Brendtro, L., Brokenleg, M., & Van Bockern, S. (1990). Reclaiming youth at risk. Bloomington, IL: National Education Service.


Search Institute

Keys to Quality Youth Development

America’s Promise

National Youth Development and Information Center

U.S. Department of Health and Human Services

Author Kris Peterson is with InterDependence, Inc. in St. Paul, Minnesota.

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