Yesterday Senator John Edwards posted a diary at DailyKos in which I posted this comment:
Senator Edwards; best to you and Elizabeth.
Big on my mind these days: educational opportunities for my high-functioning autistic son. There's been tons of resources thrown at early-diagnosis and education.
But once beyond the early-elementary school age, public resources are non existent. We are looking at a middle school situation where no plans have been made for educating a student population with an increasingly common diagnosis.
Going to mainstream kindergarten doesn't mean an autistic is "cured". As our children grow, they're [sic; typing too fast!] needs change. The social landscape is much simpler for a 1st grader than it is for a 6th grader.
Today’s NY Times has an Op Ed piece which demonstrates precisely what I mean.
It is a call by the parents of a 4 y/o autistic for more funding for diagnosis and education of pre-school autistics. In it, they state:
In America, you have to be lucky or rich to get proper care for your young autistic child.
Of course, this depends (1) what kind of autism your child has, and (2) how one defines “proper care”. “40 hours a week of one-on-one” therapy is not the only appropriate or effective method of treatment; our son advanced rapidly in a state and federally-funded special preschool, which he attended for 4 or 5 afternoons a week. Quite frankly, these parents are demonstrating little understanding of the spectrum nature of autism, and in doing so perpetuate some common myths:
Intervention is costly because it is essentially one-on-one. Youngsters with autism spectrum disorders are hard to engage. They do not closely observe their environment or naturally imitate the actions of others. Nor do they tend to seek out human interaction and communication. Overcoming these barriers requires a highly individualized and intensive program. There is broad consensus, as reflected in previous studies by the National Academy of Sciences and American Academy of Pediatrics, that early and intensive intervention is critical. The core of most intervention plans, it is generally agreed, should be a cognitive method engaging the child’s intellect and emotions and sociability.
The highlighted sentences are not true of our son. Some of his greatest frustrations stem from the fact that he does crave “human interaction and communication”, he is very interested in emotional attachment, but is very bad at figuring out how to “engage” with others. Further, he is an incredible mimic, able to reproduce the nuance of dialogue he's memorized from his favorite movies. However, being able to reproduce the vocal tones of sarcasm doesn't necessarily means he understands the meaning behind those tonalities.
My son's official diagnosis is "high functioning autism". He does not have Asperger's Syndrome — although he is quite verbal, his expressive language is much less sophisticated than those with Asperger's; he has problems with grammatical structure, pronoun usage, and tense.
He is nothing like Rainman; although he does have a tendency to fixate on certain subjects for periods of time, he is not an autistic savant, able to perform mental mathematics or draw with incredible detail.
He does not flap his hands, or twirl around, or pound his head against the wall; but he will pluck at his clothing as he tries to translate his thinking into words, slap his forehead with the palm of his hand when very frustrated and, occasionally (very occasionally, thank heaven!) regresses to biting himself.
My son is able to walk to a store by himself and make purchases, request assistance at the library help desk, meet people's eyes when speaking to them, form friendships with other children — he does most things appropriate for a ten year old boy. He thrives on attention, holds conversations, and loves being hugged and cuddling with me on the couch, watching a movie. Those with only a casual knowledge of the autism spectrum and who haven't spent much time with our son are often surprised to learn that he is autistic.
But he is autistic. He has needed extra assistance in learning to handle doing the things a ten year old boy does. He needs the opportunity to practice how to accomplish these "normal" things. He is not cured, and still deals, on a daily basis, with limitations in understanding the non-concrete world of emotional motivations. He can not separate "big deals" from "no big whoop". To him, every mistake is major, every deviation a disaster, to be obsessed over for hours or days. He frequently dissolves into tantrums and shouting when confronted with even the mildest frustration. In addition, he officially has been diagnosed with an anxiety disorder, because he is constantly aware that he has limitations, anxious to please and be accepted, yet doesn't have the tools to deal with limitations that affect his acceptability.
In a perfect Catch 22, he knows that he has autism, and he knows that autism makes it hard for him to navigate emotionally and socially, yet at the same time doesn't have enough understanding of abstract concepts to understand exactly what it is that he is having difficulty doing.
Our son — thanks in large part to very experienced, sensitive kindergarten and first-grade teachers — thrived in mainstream classrooms his first two years of public school. From the viewpoint of the parents of a 4 year old autistic, such as the parents who wrote the NY Times Op Ed piece, that accomplishment apparently is all that can be imagined, and they and they are not looking past those early educational years.
But we all can remember just how painful and difficult the middle-school years were. Ask almost any adult about middle school and the response will be "wow, that really sucked". We were so unsure of ourselves, of our ability to read other people, of our acceptability. Now, try and imagine being in that situation as a young autistic, not just unsure of the accuracy of your perceptions, but knowing you're missing important information yet at the same time not understanding how much meaning is contained in facial expressions, hand gestures, vocal tone, volume and cadence.
We recently had our son re-evaluated at the JFK Center for Developmental Disabilities in Denver. At the post-evaluation meeting, I expressed my frustration at the lack of planning and programs in the public sector for autistics of double-digit age. The leader of the team told me that, when it comes to public and foundation funding, a majority of the available money is directed to studying the causes of autism, early diagnosis of autism, and early education of autistics. In considerable part this is so because the common misunderstanding is that being able to function in mainstream kindergarten means the autistic is “cured”, and money is directed towards achieving that magic milestone.
But when it comes time to fund autism in adolescence, most of the money has already been spent on the autistics' early years. There are few studies of what interventions might work for the teenage autistic and, consequently, few available programs.
So we have a wave of children like my son descending on our public middle and high schools, with no plans in place to help them navigate that difficult social world and usher them into an emotionally stable adulthood. Yet on the Op Ed page of the NY Times is a call for yet more of the limited amount of funding available to be directed towards the pre-school autistic.