A letter to NT Parents

I wrote this about a year ago.  I didn’t post it here before because I thought it sounded more crabby than I intended.   For autism awareness month I dusted it off, and posted it to the Mom list that inspired it.

Dear Parents

My four year old daughter has autism.  Maybe you know us.  Even if you never meet us, considering the number of people with autism is currently 1 in 110, you will meet people with autism in your lifetime.

A while ago someone on a Mom list was concerned their child had autism.   I was kind of shocked by some of the responses.  Autism is all the rage now. Really?  Do you think it is trendy and fun to have a child who does not speak?   Is it cool to know my child may never live independently?   Do you think all the children who are being diagnosed are undeserving of the services to help them?

Someone else said  Your child doesn’t have autism – he’s great! I get that you probably do think a child with autism is quite awful.   But I feel the need to tell you that I think my child is great.  Better than great actually, but I’ll spare you my gushing.

My daughter is a person, she has likes and dislikes and she also has real challenges with communication.   Sometimes she is overwhelmed by sounds and sights around her.  I do my best to keep her away from stressful situations, but I do feel like it is important for her to be able to go out into the community.   If she screams or has a meltdown I will leave with her.  But every once in a while I really need to buy milk or something that can’t wait .   Yes I know she is loud.  Please have a little patience.

You may tell me that only babies have tantrums like my daughter, and if I would just discipline her she would behave.   I don’t expect you to understand that she has had years of behavior therapy.   But I hope that you can understand that part of having autism is immature development.   In many ways, she is like a baby or a toddler in terms of her ability to communicate.

Please don’t get in my daughter’s face while she is in the stroller and tell her she is too big and too old to be in a stroller.   Not that it matters, but she’s not seven like you think.   I’m sorry your world-view is so narrow that the sight of a large child in a stroller offends you.  But it is not my problem, please deal with it on your own time.

I’m going to take my daughter to the playground, and she is not going to act like your children.   When my daughter sees your son playing with a bouncy ball, she wants to play with the ball and with him, but she doesn’t know how to ask.  She will take the ball from him as her way of asking.  I’ll be right there with her, and I’ll tell her the ball is not hers, and I’ll make her throw or roll the ball back to your son.   I’ll admit it must look strange to you, that my child can’t do something so simple as say play with me, and that I have to be so involved with her.  In my fantasies (which occasionally come true) your son would play with my daughter.  Just pass the ball back and forth a few times.  It is a public playground after all.  It is your son’s choice, and if he doesn’t want to play with my daughter, that is fine.     But please don’t give us dirty looks, drag him and your other children away, and tell them they have to stay on the opposite side of the playground from us.   You are teaching your child that it is okay to be rude to people who are different and also that they should be ignored.

My daughter enjoys watching your daughter and her friends climbing on the equipment and hanging upside down.  She also likes it when your son brings his remote control helicopter to the playground to fly.  I know she looks a little strange, her body quivers with excitement and sometimes she’ll jump up and down clapping and and saying yay.   The kids don’t mind the attention, and I keep her safely out of harms way.   Please just let her watch.

I’m not looking for pity or sympathy.  But I do hope for a little patience and understanding.   You will meet people with autism, they will be your child’s classmates and your neighbors.  Autism is not contagious, in fact studies are showing that typically developing children actually benefit from exposure to children with special needs.   I’ve seen this first hand.  It’s never to early to teach tolerance, and that is a gift that will continue to give through a person’s life.

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  1. Your letter is perfect! LOL I’ve also got a 4 year old Autistic daughter, though she is able to talk. But she still doesn’t have very good balance and motor skills and occasionally I still put her in the stroller if we’re in a hurry (because she stops to look at everything along the way) and sometimes just because the day before, she had too many falls. One day she fell over 3x and grazed her arms, hands, forehead and nose. Also she is still in diapers. You are right. It’s good for children to spend time with special needs kids. I wonder if I did when I was young. All I know is that I’ve always been able to relate to and understand special needs kids. I had a few friends in school that had special needs and I spent lots of time with them. I didn’t care what anyone else thought. If one of my NT friends decided they didn’t like me because I hung out with special needs kids I would rather they walk away, than for me to walk away from the wonderful special needs friends I had 🙂 I didn’t care if I got bullied/teased.

  2. Well said!

  3. Beautiful letter.
    I carried around cards in my pocket that said :
    “My child has autism. Shut the hell up.”
    (Except “hell” was actually another 4-letter word 🙂
    Worked perfectly for those people who would tell me that my kid was too big for a stroller, or too big to be wearing diapers.
    I had a nicer version of the card that was more polite, and explained that children with autism behave in strange ways, and their behavior is not a result of bad parenting.

  4. I’m another blogging mommy (with a few mutual facebook friends) just dropping in to say that I have sometimes wanted to write a similar letter and I will totally admit to having needed Moggy’s rude card on occasion. Lately though, anytime I mention autism, everyone seems to have a personal connection — which makes people way more empathetic — but highlights the oncoming prevalence crisis all the more. Wishing you and yours the best!

  5. I love this letter!
    Here from the blog hop…
    Had to tweet it actually- thank you!!

    I also loved your post on your daughter’s language development! Yay! That is sooo exciting. It had me thinking back and remembering how that felt for us. My son is now 12 and has amazing expressive language – it took a long time, and we know how fortunate we are. Social language and processing are ongoing challenges, but really that is to be expected.

    I recall that I always corrected or reinforced him with the word “YES” and then… “We say that like_____” or “You are excited about the ____”. I think starting with “yes” made him feel proud of his efforts, that we accepted what he said, and that he was understood. I also prompted him and whispered in his ear when he needed to respond to someone or initiate communication or ask a question. I remember how exciting it was when he started rephrasing what I said to his own words. I also remember when I puled back from that support and he still needed it he would say, “Whisper me, Mom…”

    This weekend We went to the park and there were some kids H’s age on the swings. While we were still in the car I reminded him that he should observe to see what was going on before he approached and then remember to say “Hi”. His response: “Mom- 4-year-olds say “Hello”, 8-year-olds say “Hi”, but if you are 12 or 13 you say “Yo’ or ” ‘sup”(abbreviation for what’s up). Needless to say… this was a proud moment!

    Wow… thanks… it is amazing to take a moment to reflect back and see how far we have come.

  6. […] I have posted about acceptance before: Giving up on greener grass On acceptance A letter to NT parents […]

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