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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