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Date Posted: 10/3/2010 9:56 PM ET
Member Since: 9/1/2005
Posts: 8,035
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A friend sent this to me and I want to share with all of you:



Dear Family and Friends-

            I understand that we will be visiting each other for some get-togethers 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 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 or silly and out of control, 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 will 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.

            Get-togethers 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 I had a private place set up to where I could retreat every time I go to get-togethers.

            If I cannot sit at the meal table, do not think I am misbehaved or 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 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 the best clothes there are.  It?s because she knows how much stiff and frilly clothes 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 crabby.  Things have to be done in ways 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, tap a string, 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, laughing, 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.  Perseverating 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 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 and not rude remarks.

            Gatherings 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 these celebrations that is comfortable for us all, as long as you?ll try to view the world through my eyes!


            -Author Unknown


 I do not know who wrote this, I do feel it can help so many, Bless the child that wrote this letter.

Date Posted: 6/11/2011 8:09 PM ET
Member Since: 4/9/2008
Posts: 550
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I just found this today. Thank you. It's giving me ideas on helping to train those youth leaders at church who want to work with my daughter.

Date Posted: 6/19/2011 11:58 AM ET
Member Since: 4/17/2008
Posts: 1,488
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What a great letter!  It would be really helpful to any potential care providers or anyone who will be working with an autistic person.  I wrote a small 'guidebook' about my son to give to potential care providers, but I love the way this letter is written in 'first person' because it gives a different perspective.  

Thanks for posting it!

Date Posted: 6/27/2011 1:36 AM ET
Member Since: 11/26/2010
Posts: 2,780
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I Love this so much! My 20 year old brother is autistic and as a family we strive to let others know why he is the way he is. luckily he is high functioning but he does have his own issues as well.  Thank you for posting this.

Date Posted: 8/9/2012 11:55 PM ET
Member Since: 6/26/2012
Posts: 6
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Amazing letter and so beautifully written :)

I work with children on the spectrum and this is a perfect example of self advocacy.  It is so easy to accomodate a person, once you understand where something is coming from.

Date Posted: 9/5/2012 1:16 PM ET
Member Since: 8/30/2012
Posts: 1
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This brought tears to my eyes, I see my nine year old son struggle with these same problems every day and my self have to deal with comments from other adults as to his behavior. Often when i try to explain I am told I am making excuses for his poor behavior and am being a lazy parent. I wish more people could understand our children and see what beautiful Children they really are.

Last Edited on: 9/5/12 1:17 PM ET - Total times edited: 1
Date Posted: 12/4/2012 8:46 AM ET
Member Since: 2/23/2012
Posts: 593
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I couldn't agree more!

Date Posted: 6/14/2013 1:52 AM ET
Member Since: 5/22/2013
Posts: 28
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Really heart tending... bless the child...

Date Posted: 2/12/2014 4:42 PM ET
Member Since: 2/2/2008
Posts: 742
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That was so sad to read, but coming from the person that has this has made it that much easier to understand their situation. Well written even though it made me cry.

God bless those special children and the special parents that love them and have to take care of them..

Thanks for sharing