Fran
Former desparate mom
I know this has been posted before but it may be useful for the new members who have children who have difficulty with the holidays. I think it helps with more than parents of kids on the spectrum. Many of our kids cross diagnostic lines. This is applicable to many of them.
Fran
"This was written for the purpose of it being sent to relatives, friends, and hosts
of holiday gatherings that might need a crash course in what to expect from
their guest on the autism spectrum. This letter is written as if the individual on
the autism spectrum is writing it personally.
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, a
hidden disability called autism, or what some people refer to as a Pervasive
Developmental Disorder (Pervasive Developmental Disorder (PDD)), challenges me. Autism/Pervasive Developmental Disorder (PDD) is a
neurodevelopment 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.
Thanksgiving & Christmas is one of the roughest holidays for me. With large
crowds and holiday shopping it can be very overwhelming, even a bit scary.
When planning a party remember that with my over sensitive hearing and eye
sight, Christmas trees and holiday smells can cause me mild to severe pain or
discomfort. If the noises are impossible to control a personal stereo with
headphones set to a safe level for children may help drown out background
noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that 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 cannot sit at the meal table, do not think I am misbehaving 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
is 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 thingsjust 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-a-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 "stimulant" for a while, 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 personan 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! "
*Author, Viki Gayhardt
Fran
"This was written for the purpose of it being sent to relatives, friends, and hosts
of holiday gatherings that might need a crash course in what to expect from
their guest on the autism spectrum. This letter is written as if the individual on
the autism spectrum is writing it personally.
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, a
hidden disability called autism, or what some people refer to as a Pervasive
Developmental Disorder (Pervasive Developmental Disorder (PDD)), challenges me. Autism/Pervasive Developmental Disorder (PDD) is a
neurodevelopment 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.
Thanksgiving & Christmas is one of the roughest holidays for me. With large
crowds and holiday shopping it can be very overwhelming, even a bit scary.
When planning a party remember that with my over sensitive hearing and eye
sight, Christmas trees and holiday smells can cause me mild to severe pain or
discomfort. If the noises are impossible to control a personal stereo with
headphones set to a safe level for children may help drown out background
noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that 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 cannot sit at the meal table, do not think I am misbehaving 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
is 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 thingsjust 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-a-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 "stimulant" for a while, 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 personan 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! "
*Author, Viki Gayhardt
