My Son is 12 Years Old Now: Some Thoughts on Early Intervention
A new Pediatrics study of how "highly effective" early intervention can be for toddlers on the autism spectrum has been getting quite a bit of discussion in the media and blogs. The study's participants were 48 children aged 18 months to two and a half years, who had been diagnosed with autism or PDD-NOS. They received 20 hours of therapy involving ABA (applied behavioral analysis) teaching methods and developmental ‘relationship-based’ approaches, the so-called "Early Start Denver Model." The IQs and receptive language of the children in the intervention group increased significantly more than those of children in a control group (these children "were referred to community-based programs for therapy," according to a UPI article).
Charlie, who was diagnosed with autism when he was just turning two years old, started receiving Early Intervention (EI) in the form of 40 hours/week of in-home ABA therapy when he was 2 years and 4 months old. He continued to receive more than 20 hours/week of ABA therapy along with speech therapy and OT. While we never did any sort of actual "developmental 'relationship-based'" therapy, Jim and I read a number of books about Floortime by Stanley Greenspan, M.D., and much of the play that Charlie's therapists, and we, interspersed with his more formal ABA programming bore than a resemblance to Floortime-sort of methods.
Charlie certainly benefited from all this teaching, though it did not result in him becoming anything like "recovered from autism." Indeed, as I've regularly noted, he continues to have many challenges with his academic learning and to struggle with communication and social interactions. Certainly setting up all those hours of therapy and learning a number of teaching techniques made Jim and me feel that we were doing what we could, if not all we could, to help Charlie. We do think that those early teaching sessions created a lasting foundation for learning in Charlie who, to do this day, wants to go to school and does his best to learn.
Frankly, I think it's pretty difficult to argue against Early Intervention for young children with developmental delays. We can't go back in time and see what might have happened had Charlie not had all those hours of teaching when he was a toddler and preschool age, nor would we want to. I do feel a bit more than wary of any claims to Early Intervention making it more possible for a child to be mainstreamed, lose a diagnosis, lead a "normal life." Charlie received the kind of high-quality and intensive Early Intervention that is routinely recommended these days. Nonetheless,, if you've been reading this blog for the past couple of months, you know that he has very huge struggles, and some of the behavior and other challenges that are of the "textbook autism nightmare without end" sort.
I'm going to sound like a bit of a crank, but, even as it's important that more and more studies are done about the efficacy of Early Intervention, I've a growing, nagging sense that too much energy is not being focused on the areas of real and growing concern. Charlie continues to need a number of services "despite" all of that Early Intervention, and he is hardly the only getting-older-as-in-adolescence/teenagerhood/adulthood child on the spectrum who does. An article in the December 2nd Washington Post starts by noting that
The middle school years, when nothing seems more important or more impossible than fitting in, are rough for nearly everyone. But they are particularly brutal for preteens like Will Gilbertsen, whose mild autism makes him stand out.
As the number of children diagnosed with autism has ballooned nationwide, so has the population of children like Will, who are capable of grade-level academics but bewildered by the social code that governs every interaction from the classroom to the cafeteria. Not so profoundly disabled that they belong in a self-contained classroom but lacking the social and emotional skills they need to negotiate school on their own, they often spend the bulk of their day in mainstream classes supported with a suite of special education services ranging from life-skills groups to one-on-one aides.
For some students, that arrangement works. But many parents of this growing group worry that including children in the mainstream this way fails to teach them what they need to know to navigate the world independently and succeeds instead in imbuing them with a sense that they're unacceptably weird. Increasingly, Washington area educators are offering alternatives.
The difficulties faced by Will, and his family's decision to place him in a separate, special school, are very much the same as those Jim and I have faced with Charlie's education. Will and Charlie are very different in many ways, but, it seems, middle school has been a tremendous, and unfortunately insurmountable, challenge for both of them. We would like very much for Charlie to continue to be educated in a neighborhood school in the community, alongside children who don't all have his diagnosis, and in a setting where there would be many opportunities for inclusion. But doing this seems like a particularly large challenge in middle school (I can't speak about high school; at this point, it seems likely that Charlie will remain in a separate school for the rest of his education). Will was reportedly found with his head in his hands one night and said to his mother, Kathleen Atmore, a neuropsychologist who specializes in autism:
''Do you ever get so tired, and things just get so hard for you, that you think maybe you should die?'"
Wow, is all I can say on reading this. Charlie isn't able to say such, but often Jim and I have thought that he might be feeling such things at his old placement, a self-contained autism classroom in a public middle school with 1800 students. Things were just too hard.
And I've started to feel (no scientific studies to prove it), that maybe Early Intervention is Early Intervention and while it might predict how some things in the early years of school goes, as a child grows older—as a child starts to grow out of being a child—things change and you can't really predict what will happen, based on earlier, and early, progress. It's not only that the expectations and demands placed on children in middle school were too much for Charlie. The other children's needs were changing as they got older, and the teaching methods, and perspectives, of the teachers themselves changed. When Charlie was in a public middle school, it felt as if his developmental delays were starkly evident all over again; that there a gulf between him and the other children, and that that gulf only seemed to get wider. The whole situation was further compounded because Charlie entered puberty relatively early, at 11, while cognitively, he is still a much, much younger child.
Even today in the aisles of ShopRite, a woman holding a pack of Huggies maneuvered her way past Charlie, her "excuse me, sorry" suggesting that she thought Charlie to be a full-grown male going grocery shopping, not a 12 1/2 year old with a neurodevelopmental disorder whose mother was close on his heels.
Though whether without his years of school and in particular those early years, Charlie would have been walking before me in the store last night, basket in hand and easy-going about not getting brownie mix (because, as I explained, we still had a pan of brownies at home to finish)—let me just say, I'm very glad to be able to be walking with Charlie.