Holiday
Letter
This
article appeared in the holiday 1999 issue of ASAP News! (Volume
3.5) The Autism Support and Advocacy Project, and Potential
Unlimited Publishing.
"Dear
Family and Friends:" was written for the purpose of it being
sent to relatives and hosts of holiday gatherings who might
need a crash course in what to expect from their guest with
autism.
Dear
Family and Friends: " I understand that we will be visiting
each other for the holidays this year! Sometimes these visits
can be very hard for me, but here is some information that
might help our visit to be more successful. As you probably
know, I am challenged by a hidden disability called Autism,
or what some people refer to as a Pervasive Developmental
Disorder (PDD). Autism/PDD is a neurodevelopmental disorder
which makes it hard for me to understand the environment around
me. I have barriers in my brain that you can't see, but which
make it difficult for me to adapt to my surroundings.
Sometimes
I may seem rude and abrupt, but it is only because I have
to try so hard to understand people and at the same time,
make myself understood. People with autism have different
abilities: Some may not speak, some write beautiful poetry.
Others are whizzes in math (Albert Einstein was thought to
be autistic), or may have difficulty making friends. We are
all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful
and make me want to run away. I get easily frustrated, too.
Being with lots of other people is like standing next to a
moving freight train and trying to decide how and when to
jump aboard. I feel frightened and confused a lot of the time.
This is why I need to have things the same as much as possible.
Once I learn how things happen, I can get by OK. But if something,
anything, changes, then I have to relearn the situation all
over again! It is very hard.
When
you try to talk to me, I often can't understand what you say
because there is a lot of distraction around. I have to concentrate
very hard to hear and understand one thing at a time. You
might think I am ignoring you--I am not. Rather, I am hearing
everything and not knowing what is most important to respond
to.
Holidays
are exceptionally hard because there are so many different
people, places, and things going on that are out of my ordinary
realm. This may be fun and adventurous for most people, but
for me, it's very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down.
It would be great if you had a private place set up to where
I could retreat.
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If
I can not sit at the meal table, do not think I am misbehaved or
that my parents have no control over me. Sitting in one place for
even five minutes is often impossible for me. I feel so antsy and
overwhelmed by all the smells, sounds, and people--I just have to
get up and move about. Please don't hold up your meal for me--go
on without me, and my parents will handle the situation the best
way they know how.
Eating
in general is hard for me. If you understand that autism is a sensory
processing disorder, it's no wonder eating is a problem! Think of
all the senses involved with eating. Sight, smell, taste, touch,
AND all the complicated mechanics that are involved. Chewing and
swallowing is something that a lot of people with autism have trouble
with. I am not being picky--I literally cannot eat certain foods
as my sensory system and/or oral motor coordination are impaired.
Don't be disappointed If Mom hasn't dressed me in starch and bows.
It's because she knows how much stiff and frilly clothes can drive
me buggy! I have to feel comfortable in my clothes or I will just
be miserable. When I go to someone else's house, I may appear bossy
and controlling. In a sense, I am being controlling, because that
is how I try to fit into the world around me (which is so hard to
figure out!) Things have to be done in a way I am familiar with
or else I might get confused and frustrated. It doesn't mean you
have to change the way you are doing things--just please be patient
with me, and understanding of how I have to cope. Mom and Dad have
no control over how my autism makes me feel inside. People with
autism often have little things that they do to help themselves
feel more comfortable. The grown ups call it "self regulation,"
or "stimming'. I might rock, hum, flick my fingers, or any number
of different things. I am not trying to be disruptive or weird.
Again, I am doing what I have to do for my brain to adapt to your
world. Sometimes I cannot stop myself from talking, singing, or
doing an activity I enjoy. The grown-ups call this "perseverating"
which is kinda like self regulation or stimming. I do this only
because I have found something to occupy myself that makes me feel
comfortable. Perseverative behaviors are good to a certain degree
because they help me calm down.
Please
be respectful to my Mom and Dad if they let me "stim" for awhile
as they know me best and what helps to calm me. Remember that my
Mom and Dad have to watch me much more closely than the average
child. This is for my own safety, and preservation of your possessions.
It hurts my parents' feelings to be criticized for being over protective,
or condemned for not watching me close enough. They are human and
have been given an assignment intended for saints. My parents are
good people and need your support.
Holidays
are filled with sights, sounds, and smells. The average household
is turned into a busy, frantic, festive place. Remember that this
may be fun for you, but it's very hard work for me to conform. If
I fall apart or act out in a way that you consider socially inappropriate,
please remember that I don't possess the neurological system that
is required to follow some social rules. I am a unique person--an
interesting person. I will find my place at this Celebration that
is comfortable for us all, as long as you'll try to view the world
through my eyes!
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2001
Autism Rally, Conference, Hearings, and Caucus

Book
of the Week:
Sleep Better, A Guide to Improving
Sleep for Children with Special Needs; V. Mark Durand
Sign
Our Guestbook
Thanks to everyone who has signed it!
Attitude
is Everything!
Searchable
Databases:
Medline
Plus
Combined
Health Information Database (CHID) Online
NLM's
PubMed
Computer
Retrieval of Information on Scientific Projects (CRISP)
ClinicalTrials.gov

Salon
Cover Story on Autism:
"Secrets
and Lies" by Lesli
Mitchell
Crash
Course in Autism; Holiday Letter
about the challenges autistic individuals face during the
holidays.
New
eLearning course; What
is Autism? From The Autism Society of America.
Significant
statement on the incidence of autism in the sixth edition
of Child Neurology-2000, Menkes & Sarnat.
We
Cured Our Son's Autism by Karyn Seroussi
Helpful
Hints for Persons with Autism (This can be posted in a school
or other public place)
Tips
for Dealing with Doctors and Labs
Tips
for Families with a newly Diagnosed Child
Dr.
Jeff Bradstreet's Excellent 74 Page Biomedical Summary (PDF
format, may take a minute to load!)
Click
here to get Adobe Reader.
Autism
Recovery Network's excellent Resource
Guide. A great start for families of newly diagnosed kids.
(PDF
format, may take a minute to load!)
Click
here to get Adobe Reader.
PowerPoint
Presentations from the Spring DAN! 2001 Conference (Atlanta,
GA 2001) New!
Developmental
Milestones
New!
California Special Education Statewide Enrollment by Disability
Category 1985-1999; (illustrating a dramatic rise in the rates
of autism.)
Pins
and Bumperstickers
NICHD
Autism Fact Sheet
New!
Autism
Card That may be Displayed in a Public Place.
The
Autism Society of America's position on the relationship between
vaccinations and autism.
(PDF document)

Download for Free!
Kirkman Laboratories
Guide to Intestinal Health in Autism Spectrum Disorder. A
comprehensive review of intestinal health issues in Autism Spectrum
Disorders and the options available for treating them.
Houston
Nutraceuticals Digestive Enzymes

Show
your spirit! The
Autism Recovery Network offers 3 different autism awareness
ribbons. Children's or Men's small lapel pin with small red heart
only $2 each.
Misfortune
sometimes a blessing in disguise. Star NFL Quarterbacks and their
special-needs kids.
Article:
Autistic student, parents realize a dream.
"It's
not easy living with these kids(with autism), and anything that
makes their lives better makes the family's life better,"
Anonymous
Living
as an Autistic (a 1st-person account)
Understanding
Autism in Adults
Site
Awards:
Selected for WebBound's 2002 Spring Edition of 75,000 Best Web Sites;
Selected for reliability & ease of use. www.WebBound.com
Autism
Society of Florida Member's Choice for helpful websites
Featured
on Newstalk 920 am Melbourne, Florida
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