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.
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 kind of 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! This article appeared in the holiday 1999 issue of
ASAP News!...(Volume 3.5) The Autism Support and Advocacy Project, and
Potential Unlimited Publishing.
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.
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 kind of 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! This article appeared in the holiday 1999 issue of
ASAP News!...(Volume 3.5) The Autism Support and Advocacy Project, and
Potential Unlimited Publishing.