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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
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My
husband, son and I recently 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
MrMeteorology@aol.com
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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 - http://www.autism-wiki.com for people to read if they wish to learn more about autism and asperger's
syndrome.
TRANSITION
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
understanding.
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.
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Adolescent Autonomy Checklist
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