How do you explain to your nine year-old son that they have autism? How do you convey what autism is, when even parents, and doctors, and scientists, and autistic adults themselves disagree? What do you (or did you) say?
I have planned this conversation dozens of times, and dozens of ways.
And, as fate would have it, I had to wing it.
This morning was a strangely hectic morning getting the kids ready for school. There had been a bomb threat that closed Los Angeles Unified School District for the day for about 650,000 students (yes, 650,000). Although our school is in a neighboring district and our district was NOT closed for the day, I was desperately trying to get information on the situation. So, I had the local news on.
I was scrambling to get the kids out the door when Jack broke the silence with a simple question:
"Dad? What's autism?"
"Where did you hear that, Jack?"
He pointed to a segment on TV that had the title Anti-Depressants and Autism printed on the bottom of the screen.
"Well, Jack, Autism is a different Neurology... A different way a person's brain works. Do you know anyone who has autism?"
"Jade! Jade has autism! Her brain works differently"
From the other room I hear "No! I have epilepsy! I take etho-suxi-mate (we're working on the kids learning the names of the meds they take right now). You have the autism!"
"No I don't. The TV said it affects babies. I'm not a baby."
"Well, Jack, it's true, but babies grow up, don't they?
Jade comes bounding in to the room.
"Jack, I have epilepsy and you have autism. We're both different."
A quick sassing of "my neuro-A-typicality can beat up your neuro-A-typicality" that only brothers and sisters can do ensued. Then Jade finished with a line I have heard her say before:
"It's okay, Jack. Different makes us beautiful."
I think she learned that at school (which is a lesson I am eternally grateful they spread, btw).
But, my friends, I cannot write words that would accurately reflect the way a parent feels when a 5 year-old gets it. When a 5 year-old both schools and shames an entire Western Culture regarding disability status because her whole life has been inclusion. In one sentence, she just said "who the fuck cares" to the entire world.
Then, holding true to her fiery red-haired nature...
"Well. It makes me beautiful. I guess it makes you handsome"
Well, that was a touching story, but I promised to tell y'all how "the talk" went.
So, here it is.
If anybody is reading this gathering ideas on how to have "the talk" with their child, one caveat: Take my story as just that... My Story.
And my advice? Be specific.
So I had a few seconds to gather my thoughts as Jack and Jade stumbled into the car and I knew I would have to explain a few things on the 10 minute drive to school. I had been fearing and planning and, frankly, anticipating this moment for the last 4 or 5 years. The anticipation came in that Jack is old enough and expressive enough to give me his perspective. I had been looking forward to that.
I had just a few moments to plan what I wanted to say... but I was/am well-versed in autism.
I knew that Jack would only be confused if I started giving him the DSM-V definition of autism. Not because it's beyond his comprehension, but because so many of the attributes no longer apply. Let's not fool ourselves here, the DSM-V definition of autism is broad.
If any of you reading know Jack now, would you believe me if I told you that the reason we had Jack assessed in the first place was because he DIDN'T talk? If you know Jack now, would you believe that he NEVER made eye-contact? Would you believe that he was a wall-walker, a tippy-toe walker, and flapper? Would you believe that he would never try new foods? Would you believe that he would go for days at a time without pooping? Would you believe that he hated the sound of the hand-dryer in bathrooms? Would you believe that he couldn't read or write or even hold a pencil? Would you believe that he had a verbal tic? Would you believe that his initial school assessment placed him in special ed? Would you believe that my wife and had our only really good fight ever about that? In the parking lot at Vons (local grocery store) no less? Would you believe there was a time that we even asked ourselves if Jack belonged in a full-inclusion classroom?
Would you believe?
If you read my blogs, I've often quoted advice I've received or professionals that have championed Jack. And I'm reminded today of his pre-school teacher when she said, at the follow-up to that initial IEP meeting, to a room of knowledgeable professionals, and two teary-eyed parents with differing views on placement:
"Jack belongs in general Ed. He belongs."
Thank you, Ms. A.
Why did I tell you all of that? To give you some perspective of where Jack is now. Remember that word... perspective.
It is possible, even likely, that at our next triennial IEP assessment, Jack will lose his Autism diagnosis for school services. He just doesn't have the developmental delays/disabilities that make up 3/4 of the criteria anymore.
So I can take a moment and say "How dare they misdiagnose him" or "thank god for early intervention".
But not scoring high enough (or low enough) on the school assessment has nothing to do with him having or not having autism. Jack still has the biggest deficit of autism there is, the deficit for which the disorder is named:
Autism (n) - From the Greek for autos (self) and -ism (state of being).
Jack is still unable to take another's perspective.
We climbed in to the car and I turned the radio off.
"Jack, do you know how autism affects you?"
"Well, Jack it's very difficult for you to take another's perspective. That means putting yourself in somebody else's head. Reacting to what they think, what they perceive. Do you understand that?"
"Let me give you and example..."
"I can take perspective!", Jade chimes in.
"Okay, let's try this. Jade if you bring a bug in to your class and show it to your friend Sally, what is she going to do?"
"She would probably scream. She doesn't like bugs"
"Right. Now Jack, what about you? If you bring in a bug and show it to your teacher, what would she do?"
"What kind of bug?"
"It doesn't matter. A rolly-polly"
"Why would I pick up a rolly-polly? I don't like bugs, so why would I have one to show my teacher?"
"That's not the point, Jack. How would the teacher react?"
"Where did I find this rolly-polly? Was it already in the classroom?"
"This is exactly what I'm talking about, Son. I want you to think about that. Try to think about how someone else is going to react to what you say. Remember that other people have their own view of you. Remember the difference between autonomous beings and sentient beings?"
"Sentient beings have feelings," said Jade. She needs to stop eaves-dropping.
"Yes, Jade. That perspective-taking is how autism affects you, Jack"
There was a palpable contemplative silence as I parked the car.
"Dad, does autism give me all the crazy ideas I have?"
"No. That's your creativity."
"Dad, does autism make it hard for me to keep friends?"
A lump grew in my throat.
"Yes, son, it does."
And I wondered if I should have lied. I wondered if I should have never said anything. I wondered if I should have played the 'ask your mother' card.
"But, Jack, you know what? You're a pretty hard-worker and we can work on this."
Yes it is, Jack. Cool.
That was it. The Talk.
But, of course, there's more. Last night and today I decided to hold true to my word and help Jack with taking "Other People's Perspective" or, as we now call it in our house, OPP.
So, tonight, Jack's sister had fallen asleep already and he was hopping around playing an imaginary Survivor type game with his cars being eliminated from the island.
He was talking very loudly about how this car had been eliminated and I simply said:
"Jack, your sister is asleep. Talking loudly might wake her up and how do you think that will make her feel?"
Jack prattled loudly on.
"Jack, you down with OPP?"
"Yeah, you know me"
Enough time to think about it passes and finally Jack whispers "Dad, do you want to see who was eliminated"?
Son-of-a-bitch. It worked.
As I re-read this blog, I am embarrassed to admit that I just laid out all the times and skills that I feared Jack would never accomplish.
He has proven me wrong on all of them.
Perhaps I am the one that needs to take a new perspective.
But there is something so wonderful this time. I am certain we will work on this together. There is no limit to you, my son.
I could not be more proud of you.
I, too, am down with OPP.
Yeah, you know me.