A TEACHABLE MOMENT…ASPERGERS, FIRSTHAND

A TEACHABLE MOMENT…ASPERGERS, FIRSTHAND

My son has an extremely sweet nature, and this tends to be common on the Autism Spec-trum. Children with Asperger’s do not lack empathy; but they often lack the knowledge of appropriate social cues. Courtesy photo.

AURORA—(January 1) My first baby didn’t look at me in the hospital.  His first coos and smiles were not directed at a person, but at picture we had hanging on the wall above his changing table.  He could not sleep without being in motion.  He was speaking in sentences at one and reading fluently by three.  As a toddler he had enormous outbursts of frustration that frightened his daycare provider.  He started biting when he was about three.

He is on the Autism Spectrum, currently diagnosed with Asperger’s Syndrome.

I was tricked by his early language skills and didn’t understand at the time the difference between speaking and pragmatic communication.  If he had not been speaking I might have sought early intervention, but I didn’t.  His father and I were on our own with him.  The outbursts and biting had me worried. He could read, but he refused to even attempt to write.  A preschool teacher suggested the possibility of a developmental disorder.  I got an initial evaluation and started occupational therapy and speech therapy when he was four.

At five he got a tentative diagnosis of Asperger’s.  It was tentative because my son refused to talk much to the psychologist who was evaluating him.  He refused all tests.  He was obstinate and had violent moments.  I learned fairly early to keep him out of situations that might cause a breakdown, but he was unpredictable. Driving a different way home might cause a two-hour meltdown, or not, no matter where we were. We had to depend on routine.

That sort of public crash is what has been in the news lately.  Could Asperger’s drive a person to murder?  Do those very noisy meltdowns evolve into violence?  I don’t believe it works that way.  A person on the Autism Spectrum would be no more or less likely to commit crime than anyone else, even less likely.  Rules and boundaries are important tools for navigating the world.  The biting and screaming sessions that I have experienced first hand come from anxiety and confusion about the world, a reaction to external stimuli.

My son has an extremely sweet nature, and this tends to be common on the Autism Spectrum.  At 12 he still holds my hand and watches My Little Pony with his sister. He loves animals and nature, but he is scared of the world.  He doesn’t understand it the way his younger siblings naturally do.  Asperger’s is a developmental puzzle.  The way the brain processes information is different…not wrong, just different.  He doesn’t have a mental illness. He doesn’t need to be “fixed”.  He has a different way of being.  It is up to me, as his parent, to guide him through the world as gently as I can; to make sense of the things he doesn’t understand; to help others understand him.

I have been given an enormous amount of advice:  spank; don’t spank; gluten and casein free diets; chelation therapy; definitely don’t vaccinate.  I have done a lot of personal research but find that there is no panacea.  Gluten-free diets do nothing for my son.  I don’t believe in chelation and I do believe in vaccines. My son has an easier time of life when I reduce his dairy intake, so I do.  He is also on medication that helps him reduce obsessive thinking and makes change a little easier for him.  He stopped biting in third grade, when he started the meds.

Above all else, his special ed providers at school have been essential.  He gets occupational therapy and pragmatic speech therapy at school.  He is learning to tie shoes and hold conversations.  Teaching these things requires education and training I don’t have.  I am grateful every day to have these educators on his side.

Asperger’s as a diagnosis is going to disappear with the newest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM).  They will lump it in with Autism Spectrum disorders and it won’t be its own thing.  I don’t disagree with this change. Asperger’s has been stereotyped into a socially awkward boy who loves math and doesn’t understand emotion.   Children with Asperger’s do not lack empathy.  They often lack the knowledge of social cues that would tell them to exhibit empathy at appropriate moments, but they have strong emotions.  To calm himself down, my son likes to be around babies. Babies have very basic social cues and he responds accordingly.

I worry about all the current misinformation about Asperger’s, mental illness and violence.  I don’t want cures or cages for a perfectly nice young man. I suspect he will get to college and shine.  He plans to be a zoologist, but I think he may end up being a special ed teacher. My son has a great future in front of him. I don’t want anything– especially ignorance–to stand in his way.