Monday, April 12, 2010

Autism Awareness

In honor of Autism Awareness Month, I bring you *Ten Things Every Child with Autism Wishes You Knew [written by Ellen Notbom, with plenty of additions from me, in brackets]:

1) I am, first and foremost, a child. I have autism. Autism is not who I am. [Did you know that it's not appropriate to call someone autistic? It's better to use "has autism."]

2) My sensory perceptions are disordered. What bothers you might not bother me much at all, and vice-versa. Conversely, some sounds/lighting/scents are to me like nails on a chalkboard to you. I wish I could be less sensitive, but I can't. Also, I am visually-oriented; just telling me is often a waste of time. Show me, instead, with words or pictures. As if that weren't enough, I have a hard time knowing where my body is in space; this is very frustrating and causes me to be far from athletic; please have compassion for me.

3) Please remember to distinguish between "won't" (I choose not to) and "can't" (I am not able to.) With all of the sensory stimulation I struggle to interpret, I'm often overwhelmed or distracted. Give your instructions clearly and directly to me. If I know what's expected, I'm more likely to cooperate. [Also, I might not "look like" I have autism. Autism is complex. It manifests differently in each individual. The fact that I'm not flapping my arms and can look you in the eye does not mean I can control my reactions to my environment. Don't believe the Rainman stereotype, either; autism comes in many forms. I may look like a typical kid, and in many ways, I am, but please don't let my normal appearance lead you to believe that I "can help it."]

4) I am a concrete thinker. This means I interpret language very literally. Idioms, puns, nuances, other figures of speech, and sarcasm are usually lost on me.

5) Please be patient if my vocabulary is limited. I have a very hard time articulating my feelings. Be alert for body language, withdrawal, agitation, or other signs that something is wrong. I may not even be aware of the signals myself and may need guidance. Because I do want to communicate, I may often chatter on about random topics I've memorized, to compensate for not being able to communicate in other ways.

6) Because language is so difficult for me, I am very visually oriented. Remember, show me vs. tell me. Visual schedules are a life saver for me, just as your Blackberry helps you stay organized.

7) Please focus and build on what I can do, rather than what I can't do. Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths, and you will find them. There is more than one "right way" to do most things.

8) Help me with social interactions. I like to be part of the group, but sometimes, I just don't now how to make or keep friends. I'm very "me" orientated and often don't pick up on social cues like facial expressions, voice tone, or body language. Teach me how to respond appropriately.

9) Try to identify what triggers my meltdowns. When I lose emotional control, it's as difficult for me as it is for you. Often, my response is due to sensory overload of some kind. Watch for patterns and try to prevent these occurrences.

10) If you're a family member, please love me unconditionally. I did not choose to have autism any more than you chose to have a child with such struggles. Please be patient; I'm worth it.

11) (my addition) Structure, structure, structure. Having a schedule; knowing what's coming next, getting a heads-up about transitions, gives me security. You can help me (and yourself) by keeping this in mind. Even neuro-typical children benefit from knowing what's coming up next. Help us both by creating transitions from one activity to another and by communicating changes to the expectations/schedule for the day ahead of time

If you've read to the bottom of this list and don't even know anyone with autism, thank you from the bottom of my heart, as well as from those to whom this subject is near and dear. With education and understanding comes compassion. For more autism resources, visit any of these resources:

Autism/PDD Information and Support
Autism Awareness Month Facebook Page
Autism Speaks

And if you're someone who knows too much about autism already and would like to share a link in your comment, feel free to help spread the word.


  1. Thank you for posting this..I have a 12 year old grand son with autism which is secondary to a syndrome..he is my special angel and our very large family adores him..he hates fire sirens and when Santa showed up on one just for him..oh my..the arms were a waving..I quit working for 3 years to spend my days with him.. his Dad was in Med school and My daughter had to work..every new accomplishment with him was a miracle to me..

  2. I really think my youngest son falls somewhere on the spectrum. This described him so perfectly.

  3. Also, I did not know that "has autism" was the proper terminology. Thank you!

  4. That show "Parenthood" has a couple with an autistic child which is pretty interesting.

    P.S. Sorry about my link showing up here--I really don't know why this is happening.

  5. Wonderful post.
    As a mom of a child with special needs (he falls in the spectrum as well) I really appreciate when others are aware and understanding.

  6. It's always interesting to learn about the needs of others. Thank you :)

  7. My son has autism but you would never know it to look at him. Thank you for reminding people of that. Some days the biggest obstacle we face is other people. I had a post on April 2nd that talks about Autism Awareness if anyone wants to read it. Here is where it resides:

  8. As an educator I always so enjoyed working with autistic children, often very brilliant and most interesting. My last autistic student is now in his second year of college and is on the Deans List pullin' a 4.gpa. He's driving himself to campus and is just a great kid. I love sharin' the success stories...there are many!

    God bless and have a marvelous Monday!!!

    Thanks for this post.

  9. Some of this goes for bipolar too, I found that interesting. My hubby is bipolar and we have structure and keep to a schedule and meds at a certain time. There are other similarities too. I think this is so valuable for everyone, even people who do not have someone they see regularly who has autism.

  10. I don't know anyone who has a child with autism. But I've read many a post from those who do. This was one of the most informative articles I've read on the subject. Thank you.

  11. Karen, I disagree. I don't think Manny is supposed to be a character on the autism spectrum; I think he's just eccentric (and I love him, BTW.)

    Dysfunctional Mom--Have you ever had him evaluated? Early intervention can make a BIG difference :)

    You're welcome :) I'm happy to help :)

  12. Autism is near and dear to my heart: I've been working with children with autism for 25 years and have seen the incidence of autism dramatically increase. Thanks for helping to raise awareness!

  13. Thanks so much -again -for posting on this topic and working to give more people information about Autism. As you know, my two younger grandchildren (siblings) both have autism and I post about them fairly frequently. My last two posts each show some of the ways in which autism can manifest itself. I love each of them dearly, wouldn't trade 'em for all the tea in China, but boy there are times when one launches into a meltdown of massive proportions that can really have one questioning their sanity!

  14. Thank you for sharing this. I am not a parent of a child with autism, I appreciate being educated. The more we know, the more inclusive the world becomes for all of us.

  15. Thank you so much for sharing this post--we have two kids in our family (both immediate and extended) who fall on the spectrum. Awareness is one of the biggest keys to helping guide the kids toward successful, positive experiences, especially within the school setting.


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