I got involved with autism the way lots of people do: I was dragged into it by my daughter.
She’s 16 now. She had early intervention before she was a year old, and started a 40 hour a week Applied Behavior Analysis home program before she was 4. I’ll be in trouble if I blog too much about her, as she is just as capable of using google as the next teenager.
I don’t like the term “recovered”. I haven’t ever met a child who was recovered from autism. I know they’re supposed to be out there, somewhere. I’ve just never met one. But I do know kids who have gotten better.
After my daughter started school, I started working in ABA and autism home programs. I got used to driving again after the years trapped at home. Then another autism mom convinced me to get certified as a behavior analyst. My friend wrote a book and got her Ph.D., but I’m still just an underachieving autism mom. Well okay , my daughter with autism is in high school taking chemistry and French, and is writing a English paper about the European origins of the Salem witch trials. My older daughter is in college majoring in math. I’m pretty proud.
I work with a lot of kids in home programs and schools, mostly as a private consultant. The kids I work with generally learn to talk and pester their parents like regular kids. They are mostly in regular classes and regular schools. But even this achievement isn’t close to the end of the autism journey. The next mountain to climb is “social skills”.
The kids with well-developed language have gaps in social skills, like potholes that get bigger all winter. They look tiny at first, but over time….the cracks open wider and wider. For years, I read everything I could find, and went to all of the workshops with autism social skills experts…and yet…….my bookshelves are sagging, one bookshelf even broke……and I still get a question like “I know I’m supposed to say hi to everyone, but why should I?” One time I went to a talk where a dad described how he created a circle of friends for his child. It involved taking the friends up in a private plane. That’s what it takes for our kids to have friends?
(For those of you who say: but if only you placed your bets on DIR, or RDI, or GF/CF, or Son-Rise…I repeat: I’ve met dozens of families and kids, but I still haven’t seen any recovered kids, from any method).
(And the kids I know who had ABA aren’t robots, they’re……mouthy, opinionated, stubborn, and funny).
When kids with autism are preschoolers, us autism parents stuff them full of every therapy, diet and supplement we can find a way to pay for as we race to the kindergarten finish line. But even the “high functioning” kids are, one way or the other, not quite in sync socially. And maybe this is okay for the beginning of elementary school. Sometimes our kids can even pass until about 4th grade when the popularity game starts. They get invited to some birthday parties. Have some playdates, maybe even a friend or two, before puberty hits.
But the invitations start to dwindle, teachers complain about nose-picking, the other parents avoid eye contact in the grocery store…. so we ask the school to put social skills on the IEP. And what happens next? The Speech Lady sits a pile of socially awkward kids in a circle and makes them take turns talking about their weekends. They play board games with names like “Mind your Manners” and “Friendzee”. We get a speech folder with worksheets like “Idioms” or “Joining a conversation”.
None of this has any impact on the eye contact, or on the invitations.
But: over the years we’ve collected a little band of fellow travellers. Some hobbits, a couple of dwarfs, an elf………the pothole metaphor doesn’t work anymore, as the cracks turn into chasms. I envision us parents as hobbits all running together out of the mines of Moria, turning to see the bridges falling down into the abyss as we barely get across. Autism families with similar kids band together on the quest for social skills. An autism -mom- friend starts some social groups at her church: music, yoga, drama……. and then we recruit a cool rock musician to teach social skills.
This is how we think about the problem: Normal babies love people. Babies make cute noises just to get you to look at them. They think people are fun. Maybe kids with autism love cuddling with their families, but they don’t tend to enjoy all that back and forth interacting, especially if there’s talking involved. It’s more satisfying to do the same thing over and over with objects. For kids with autism, people don’t make the world better: Adults tell you what to do, and what you did wrong. Other kids want your stuff and mess up your toy set-up.
It takes a huge amount of thought and planning to arrange things so that a kid with autism actually enjoys other kids. I remember the day, early on, that we were looking at the kids in the social skills group during free time and suddenly realized that they were all chatting and playing in small groups, by their own choice! And the first time we got annoyed because they were talking to each other too much and disrupting the adult led activity! That was 5 years ago…..and we’re still working hard to stay a step ahead of what they need to know.
Next time: more details about how to work on social skills for those of you who don’t have a private plane.