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A Letter From an Autistic child to his/her family and friends (Great to use )

Forum: Children with Developmental Delays and Disorders


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December 23rd, 2010, 09:02 AM
dotcomkari's Avatar Bianca, Kai & Asia's mom
Join Date: Jan 2009
Location: Wisconsin
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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

THANK YOU Claire for Siggy! WE LOVE IT!

Kari, Proud wife to Raymond (8.16.03) proud mommy to: Olivia Katherine ( born still 3.5.00), Bianca (12.23.03) , Kai (4.28.06) and Asia (7.14.08)

Proud Member of the :
Children With Special Needs, 2008 July Playroom, ASD Board, Stillborn Baby Board
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December 23rd, 2010, 12:50 PM
Mega Super Mommy
Join Date: Mar 2010
Posts: 2,338
Thank you for this, I borrowed it and put it up on my FB page(not the post just the letter so no worries about things being linked back.)

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December 23rd, 2010, 05:38 PM
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I was thinking about doing the same thing.
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December 28th, 2010, 02:46 PM
SandKmommy's Avatar Platinum Supermommy
Join Date: Sep 2005
Location: North Idaho
Posts: 30,101
Thanks for this. Even though Seamus has only been diagnosed with SPD this letter hit me...especially the "It hurts my parents’ feelings to be criticized for being over-protective, or condemned for not watching me close enough" line. Going to other's houses is so hard on me and Seamus for this reason. Most this letter hit me cause it screams Seamus and I wish people would understand.

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February 7th, 2011, 06:31 AM
Carwen*Angel's Avatar Fly away on my zephyr
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This is brilliant - it should be stickied!

I can think of several people I would like to read this!!!

This bit in particular is so true:

"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."

I've thought before of having a T-shirt made up that says something like "Before you judge us, my child has autism. What's your child's excuse?" lol.

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February 13th, 2011, 04:07 PM
Fae*Aibell's Avatar Mega Super Mommy
Join Date: Jun 2009
Location: Ireland
Posts: 4,711
I have tears in my eyes reading this letter. I think i will print it off and give it to family members as mine have a hard time understanding what is going on with my boys. I find a lot of people don't understand because they look normal and think we are just labelling them. I wish they could come and be a fly on my wall for 24hrs. They would quickly change their minds. Thanks for sharing.

Forever missing my 3 angel babies: Harry, Ewan, and Audrey.
I am at one with God and with Nature. I feel my oneness with absolutely everything.

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April 13th, 2011, 12:04 PM
picklesmama's Avatar <;,><
Join Date: Apr 2006
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I'm going to add to this thread since it's along the same lines :)
I subscribe to Macaroni Kids newsletter and this was in a recent issue (since it is autism awareness month). One of the publishers has an 8 year old son with autism, and she wrote it with him.

Hi Everyone, A lot of you know that I sometimes do things differently, and it can really make my sisters mad at times too , but there are reasons for this.

My parents tell me I am on the Autistic Spectrum, although I am not sure exactly what that means, it may make sense to you. I don't learn the same way others do and I also am affected differently by all the things going on around me in ways that don't affect you. All of my senses work in different ways and I can't really express myself like you can.

The Holiday season is probably one of the toughest times for me. Large crowds and lots of people can be very overwhelming, the noise makes me want to cover my ears! I do not really like all the activity at once. I sometimes do not know where to look or listen when there is so much going on. You may think I am ignoring you, I am not, I am just trying make myself comfortable. I am not trying to be rude,or bratty, I need to find ways to cope with all of this and sometimes I focus on one thing to get through it. If I begin singing , it may just be my way to feel comfortable.

Try to be patient with me, I know it is unfamiliar, it is for me too. I wish it could be different. Sometimes I know what I want to say and I just can't get it out. Autism is a pretty confusing thing to have, there are so many variations, some kids can't talk at all, others can have a conversation with you and answer your questions. My parents really want me to be able to do that someday too! Sometimes I say things that may not make sense to you, I do a lot of TV talk, not sure why, but it is one of the quirky things I do.

It is very hard.

Don't mind me if my mom or dad give me a computer to play with or my DSI, I need to have a way to escape, this helps calm me down and give me some comfort. Don't think my parents have no control over me, they know exactly what to do.

I may try to sit with you for dinner, don't expect me to eat all the food you have, I may not even try any of it. I am not great at sitting still for long and the smells could be tough too. My parents know you really want to have us all together and they wish it could be different, but this is one of the things that I struggle with. Don't let it ruin your meal or lecture my parents, we are use to it. Go on and enjoy. I can sense when you are uncomfortable and I understand all you are saying. I am very sensitive and tuned in to all going on. I really want to be a part of this all, I just have to do it a little differently.

Please don't tell others to ignore me or leave me alone, I am aware of all that is going on, I just have to figure out how to make myself fit. I am a lot of fun, I am kind and I love to laugh ! I am a pretty neat kid and may even teach you something about the computer, take a few minute to try to do it my way , maybe I will teach you something. :)

I am so lucky to have my parents, they love me so much and work so hard every day to help me with the skills I need to learn. Don't judge them , if you've been lucky enough to have kids that follow the typical path, you do not know how tough I can be at times. My sisters have to put up with so much because I don't understand things the way they do. They deserve an extra present!
I really hope this helps you understand a little bit more about what I am thinking and doing.


His sisters also had something to say:

Written by Ashley, Marky's 17 year old sister

Autism: is a developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills.

As I sit here reading the definition of what Autism is on the website of public medical health, I find it difficult for anyone to understand the true meaning of what Autism is unless you have had experience first hand. My sister and I, along with the rest of our family, experience this on a day to day basis being that our 8 year old brother, Mark, is only one of an estimated 1.5 million percent of people that are affected by Autism. Because of Marky’s Autism, it sometimes gets difficult to understand what it is he may need, or why he may do the things he does. For example, when dinner is ready Marky doesn’t always come when called, not because he is being rude, but only because he doesn’t process that when dinner is ready we all come to the table. It is so easy to get frustrated with Marky when he doesn’t do things the way others would like him to do them, but what people don’t know, is how incredibly affectionate and emotional Marky really is. He see’s the good in everyone, anyone he meets he loves unconditionally, and there is never any judgement or prejudice. Those who have Autism, are almost all the time the most kind people you could ever come into contact with. No matter what, Marky can always make anybody smile. Now and then I will think to myself about Marky’s future and as happy as he may be, I sometimes get very scared and saddened by the things that run through my head, “how will he know when to cross the street?”, “how will he defend himself in high school?”, “Will he ever drive?”, “What if he is laughed at for things he may do in class that students don't understand?”, “are his friends going to understand him?” etc.. Yes, I do realize that these thoughts and questions are all unanswerable, but there is one thing that is for certain, we can all contribute to the comfort and happiness of those with Autism by being more aware and considerate to the people that surround us. Next time while you are waiting in line and the child or teenager in front of you are making a certain noise you don't like, doing things that may not make sense to you, instead of immediately getting frustrated and angry it is important to take a step back and look in from the outside. Think about it for a second rather than wasting energy on getting frustrated or prejudging. Think about the possibilities that whomever it may be that is bothersome as someone that has challenges and obstacles that are difficult to overcome, but ultimately in the end, even more hard to control. Autism is nothing minuscule today, it is more and more common. The more of a solid understanding and grasp that we are able to have, the more we can all work together in achieving the goal of Autism awareness. I give all the readers a challenge this week, the challenge is to “keep it in perspective” I would like for everyone to do that at least once this week, the minute you find yourself placing judgement or getting frustrated by others, just keep it in perspective and think about it from a different angle, like Marky! That's what I try to do. My brother teaches me everyday and these are lessons that no one will get in school ! For that I thank him.

Written by Sophia, Marky's 10 year old sister

Having an Autistic sibling can be, well, hard. Especially when they are acting loud and doing things differently than the rest,I have an Autistic brother , Marky, he is 8 years old and can be a little wild. I love him anyway .We love to play together . Usually we play hide and seek or tickle tag. He loves to laugh and have fun. He may not always be able to tell you what he wants but we can usually figure it out. My friends like to play with Marky too and I am happy that they have fun with him. Sometimes he can do things that embarrass me and it can be hard . I know that he does not know any better . Marky always makes us laugh. He may be Autistic on the inside but on the outside you couldn't even tell. He is a great brother .

Crissy mama to Jack 7.16.01 ~ Mia Bella 10.29.02
Angus Pickle 2.24.04 ~ Sydney Bean 10.26.06 & Kater Tot 2.15.09

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