Autism is but one part of my son’s soul

Conversation with my lovable eight year old boy with autism.

Me: Do you have autism?

David: Yeah. (Pause.) I want some milk.

Me: What do you like to play with?

David: Calvin

Me: Calvin is coming over today. He comes to see your sister. (David never plays with Calvin but does say hi to him).

Me: Do you like school?

David: Yeah

What do you do at school?

No answer

Me: Do you like to run marathons?

David: Yeah (Pretty sure he does not know what marathons are).

Me: What do you like to eat?

David: Cheerios

Me: Are you proud of having autism?

David: Yeah

Me: What are we going to do today?

No answer

Me: What do you want to do today?

Gives me a hug.

Me: Thanks for the hug. What are we going to do today?

David: Where are we going?

Me: Where do you want to go?

David: Mommy will sit down with you.

I am not proud of my son’s autism, but I am proud of my son.  He never judges people by how they look and never worries about his own appearance.  He never complains, never says mean things to anyone and never harms a single living thing.  He’s even a vegetarian although that has more to do with food texture than some moral high ground.  He’s 100% genuine because he knows no other way to be.

He cannot have a conversation beyond a greeting but is completely predictable.  He asks me every morning, “How did you sleep?” but never reacts to my answer.  Whether I answer horrible or great the next question is always the same.  ”Did you have any dreams?”

“No David.  What did you dream about?”  To which he responds, “The pillow and the blanket.”  Everyday is the same:  Christmas, Birthdays, school days. The preferences, the exchanges, the songs we sing almost always identical.

If some genius researcher could magically wave her wand and make my son normal, I’d sign up tomorrow.  That does not mean I do not love him exactly how he is.  Autism is but one part of his rather tremendous soul.  Our exchanges though somewhat ritualistic connect us in their simplicity and familiarity.  If he could have a conversation with me, it would enhance my ability to know him.  His hugs are generous; I’ve no doubt that even without autism, he would give them freely albeit at more opportune times (not while I’m in the bathroom).  He knows the names of every child in his class and countless other people in his school.  I have no doubt that he would remember them equally well without bias even if he were not autistic.  If he did not have autism, he might be able to tie his own shoes, go to a friend’s house to play or help someone else put on their coat.

I think there is a better way to empower people with autism and their families than asking them to be proud of life altering limitations.  Diabetes, heart disease, bipolar disorder,cancer: none of these are life affirming diagnoses.  Nobody is proud to have these physical ailments.  Most are relieved that such illnesses can be managed and are grateful for the sympathy and accommodations that others afford them when needed.  Families raising children with developmental disabilities and children and adults who are cognitively aware of their disability must find a way to cope with the general public’s lack of knowledge about neurodiversity.   Some families choose to educate all those who cross their paths, while others avoid confrontation with the ignorant segments of society.  I don’t know any parents of children with Down syndrome, cerebral palsy or autism that would not want to cure their child if it was possible.  Anyone who has watched a son or daughter struggle to be understood or struggle to learn what comes so easily to peers and siblings is not excited to celebrate that disability. But that does not mean that those parents would not throw themselves in front of a bus to save their disabled child.

Autism is not responsible for my son’s strengths or his character.  To claim that autism defines him diminishes his resilience and his personhood.

I prefer autism acceptance.  Maybe it’s all semantics.  We all want to be appreciated for our real selves, no conditions, no exceptions.  But is that self in our brain, our heart, in some aspect of the universe that is common yet unknowable.  Autism is a small piece of a much bigger puzzle.

“dr_som” is a pediatrician who blogs at Pensive Pediatrician.

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  • http://twitter.com/lizditz Liz Ditz

    I want to clarify a few points in Dr. Som’s post.

    The week of December 5th, there was a lot of discussion in social media (especially Twitter) on “autism pride”.  The #autismpride hashtag was the brainchild of autism parent Shannon Rosa.  It arose out of her disgust with several blogposts following a story about anotherr another parent who had killed her child for fear of autism. 

    Shannon posted the following at her blog, Squidalicious: 

    http://www.squidalicious.com/2011/12/vanquish-forces-of-autism-evil-declare.html

    Vanquish the Forces of Autism Evil! Declare Your #Autismpride!

    It reads in part:

    “we live in a world where autism negativity and fear mongering are rampant, and I blame the media. Squarely. The Internet overflows with positive, respectful autism examples and role models that in no way downplay the difficulties that can come with being Autistic, but acceptance and even pluck don’t grab eyeballs the way that tragedy does. This needs to change. The stakes are too high; we need balance in media portrayals of the autism experience…..”

    I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like “us or them” mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls’ righteous indignation and self-pity at a roiling boil.

    It doesn’t matter how much you love someone with autism — if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics.”

    I can’t speak for Shannon, but it sure felt to me that week, after reading some catastrophizing articles in the venues that Shannon mentioned, and the news that the woman who smothered her baby for fear of autism would not be prosecuted, that it was time for more than acceptance. Autism positivity, in fact, which turned into the #autismpride hashtag.

    Readers who aren’t familiar with Shannon and her son should know that he’s 11 with intense autism and is non-conversational (Shannon’s phrases). Leo’s had more than his share of self-injurous and other challenging behaviors.  

    The point was parents CAN be proud of their children –even children with significant and sometimes intense challenges.

    Disclosure: Shannon Rosa and I are both editors of the book and the blog, The Thinking Person’s Guide to Autism.

  • Anonymous

    My son Alex, also eight, is very much like David. In the
    past year Alex has made tremendous progress in his ability to communicate with
    the help of an excellent school system and intensive ABA therapy at home.  While these interventions make a big
    contribution, I believe it was Alex’s desire to begin to reach out of his world
    and see what ours is like that makes the biggest difference .

     

    The conversation in this post is about what Alex was capable
    of last year.  Now, with occasional
    prompting, we can have a three or four sentence conversation. He will still
    answer “yes” (or not at all) to most questions when he’s preoccupied by
    something or in his own world, but I can see the balance slowly shifting to be
    more involved with the family.

     

    My wife and I have occasionally discussed that if there were
    a treatment to make Alex “normal”, would we do it? I still can’t answer that
    question. He is too special, too loving and extremely happy with who he is. I
    don’t know if I would risk taking any of that away. Patience, time, effort and
    understanding may be the best medicine for many of these children.

     

    We’ve also gotten to know some autistic adults, and I am
    encouraged by what we’ve learned. Their advice has been helpful in
    understanding Alex, and we’ve adapted some of our behaviors and reactions with
    good results.

     

    Like dr_som, I am proud of my son. I do believe autism has
    shaped “who” he is, but does not define him. I tell my three children that my goals
    for them are to be happy, healthy and self-sufficient. With the progress Alex
    has shown in the six years since acquiring the autism diagnosis I have little doubt
    he is capable of someday achieving these goals.

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