The title of this post is in reference to a post I wrote two years ago when Son was “evaluated” in preschool for behavioural issues in the classroom. The people who did the evaluation were not psychologists or even medical professionals, and all they did was observe him in the classroom one day, so I shouldn’t be surprised they missed his autism. On the other hand, looking back at the report they wrote, big flags should have popped up for somebody. I knew very little about autism back then, but after having read so much lately it was a bit of a shock to read over that report again (which I dusted off to give to the psychologist for his recent assessment) and see that, in fact, it sounded very much like autism and I’m surprised nobody else noticed that.
I’m less surprised that, a year before that, a pediatrician missed it, too. I think there are two problems in that scenario: 1) some of the social and behavioural issues that autistic kids have are “normal” in very young kids who simply haven’t quite gotten to that point in their development (just like some kids can read when they are 3, some take a while longer), and 2) pediatricians (the “gateway” to autism assessment professionals in our medical system) don’t often have much experience with autistic kids (relative to all the other issues they deal with). It’s disheartening to think how much better things might have been had we known earlier, however, what matters now is we do know, and we are going to get help while he is still young.
So in case the title doesn’t make it clear, we received the preliminary diagnosis from Son’s assessment this week: high-functioning autistic. No surprises there. It won’t become an official diagnosis until a pediatrician signs off on it. That appointment is November 10, and by then the doctor will have received a copy of the detailed assessment report from the psychologist, so it’s really just a token visit. Normally, if you stay “in the system”, it’s the pediatrician who would recommend an assessment, if they felt it appropriate. The wait list for that is about one year in our area, more in cities with higher populations. However, if you pay privately you can have the assessment done quickly, and that’s what we did (actually, our provincially funded homeschool program paid for it), which has sped up the process enormously.
Once we get the official diagnosis things will really start moving because with that official diagnosis we will immediately qualify for a $6000 grant from the Ministry of Children and Family Development, retroactive income tax credits going back several years adding up to about $20,000 come tax time, and funding from our homeschool program to the tune of about $10,000 when Son enters the Special Ed program next term. Yes, autism is big money. I’m very grateful for it since the programs Son needs are not to be found at your local community centre or Boy Scout troop and involve trained professionals who command appropriate salaries. However, I feel for families whose children don’t quite meet the criteria and who are then pretty much left to fend for themselves with children whose issues can be just as challenging, if not more, than those faced by kids with the official diagnosis.
While I appreciate the administrative and bureaucratic need for official testing, it’s not like we learned much that was new. I will say the social testing was very interesting because the activities that seemed so innocent and random on the surface were actually looking at very specific things. Plus, it’s not often as a parent that I get the chance to observe my son interacting one-on-one with someone in a way that is deliberately designed to bring out a variety of responses. Most of us “neurotypicals” don’t appreciate how much intuitive understanding we have of social interactions, the complexities of emotion, and the internal logic of flexibility to name just a few skills that autistic kids lack. It can take a professional to point out things that you haven’t noticed before about the subtleties of language and non-verbal communication. Plus, Son is so very different with me than he is with most other people, so I’m used to *that* person and not so much the one that other people meet and get to know.
However, the “psychoeducational” part of the test I could have done without. Yeah, he reads at a freaky high level. Yeah, he can’t hold a pencil well and his writing is abysmal. Tell me something I don’t know. His IQ tested as “average” (this is information of which, frankly, I would have been happy to remain ignorant; I struggled hard enough growing up, believing that most of my value as a person was in the “A” grades I brought home – I don’t need to project that onto my “average” child). Nevertheless, I consider those numbers pretty meaningless, particularly when so many of the questions assumed Son has been following the standard school curriculum (he’s had no reason to need to learn some of the “trivia” asked of him on the test, whereas he could have answered other questions not asked that would likely have stumped your average second-grader). Second, it’s no surprise that the results of his IQ testing are being noted as an “underestimate” because just sitting and focussing for so long drains so much mental energy from kids like him that not much is left for problem-solving. It’s not an effective way to measure intelligence, plain and simple. The psychologist said as much, and pointed out that its real usefulness is for children with serious learning disabilities or retardation issues that might confound autism assessments.
In fact, I’d like to make mention of something for the sake of anybody else reading this blog who may find themselves in a similar situation some time. It’s important to find an assessment team who understand homeschooling and, particularly, unschooling. Because we went through our homeschool program (which is designed for, and caters largely to, unschoolers) they were able to recommend a psychologist who was familiar with, and understood, unschooling (she has seen many students from our program and has worked closely with our Special Ed department). Too many professionals have no clue what unschooling is, and it is not unheard of for parents’ concerns to be dismissed by evaluators when it is learned that their home life cannot be fit into the Mainstream Box (i.e. your kid isn’t autistic, he just needs to be in school and regularly punished at home). For example, you would not believe how many of the questions I was asked (I must have filled out no less than six lengthy questionnaires) had virtually no relevance to our lives. Questions about homework, chores, organizing papers and schoolwork, tidiness of the desk, attitudes to new teachers, punishment and reward systems…you name it. Thankfully the psychologist was able to work with me to find situations that would be considered similar enough that the question could be answered but it was a struggle. If not for the fact that autism is largely a social disability (with a whole lot of other issues thrown in for good measure), and the questions relating to that were much easier to answer (having to do with playing in groups, one-on-one, interactions with adults versus kids, etc.), I wonder how much of the testing would be relevant to an unschooled child without that component. And it did not escape my attention that the diagnosis of ADD/ADHD, which some people describe as “autism without the social disability component”, would be based pretty much exclusively on the kinds of questions I had difficulty answering due to their lack of applicability to our lifestyle. No wonder ADD has been called a “disorder of formal education” since so many of its symptoms relate to functioning in the classroom. For many (if not the majority) of these kids, remove them from structured, coercive education and give them some room to move and freedom to explore and the “disorder” ceases to be such an issue.
So where do we go from here? Son has been accepted already into a social skills program that we have described to him as a “boys club”. Skilled social workers take small groups of boys “on the spectrum” out on excursions such as hiking, fishing, fort-building, etc. in which they can not only enjoy doing things that most kids can do within the general community, but can do without being misunderstood, chastised, ostracized, criticized, punished, and generally mistreated by people who don’t understand their behavioural challenges. In addition, the kids receive valuable skills training regarding social situations and regulation of their emotions. We’re all very excited about this program, including Son, and are eager to see him expand his repertoire of activities and experiences in a supportive setting.
Another benefit we are looking forward to receiving is that of “respite care”. This is basically “professional babysitting” – a chance for parents and siblings to gain some respite from the challenges and energy-draining focus required when caring for kids like Son. Too many families, like ours, are very limited in the availability of people – including extended family members – who are able to deal appropriately with behavioural issues that manifest in these kids. The teenager down the street is usually incapable of dealing with an autistic kid in full meltdown. This leaves us as the only real caregivers for our children and that can put a lot of strain on relationships. With Husband and I embarking on a new hobby together, and Daughter wishing to engage in more activities that are unsuitable for her brother, such respite will be a great relief to us.
We are also going to be applying for a Special Ed Assistant to accompany us on trips to the local Learning Centre (this was set up by a group of local parents from our homeschool program; we successfully applied for funding from that program so now we have a drop-in Centre open 3 days a week at which we can host free-play groups as well as mentor-facilitated activities such as clay classes, science experiments, etc). The pilot group was small, but even then I was having to spend a good deal of our time there shadowing Son and ensuring the safety of other kids should he find himself frustrated or in conflict with another child. With the Centre receiving funding the population has grown and now I must stick close to Son the entire time (the larger the group, the more challenging it is for him) which has left Daughter completely alone. Not only has this soured her experience there (she has her own challenges) but I myself am not able to participate in much of the parent discussions – both administrative and social chit-chat – that are part of the Learning Centre experience. An SEA will be able to take my place as Son’s “shadow” to ensure both a successful experience for him as well as the other children at the Centre, while allowing me to engage with Daughter and the other parents who attend with their children.
Finally, there will likely be some component of occupational therapy to deal with Son’s fine motor skill delays and overall low muscle tone that affect his ability to participate in physical activities (like sports or bike-riding) and self-care (e.g. putting on clothes and shoes), not to mention his sensory issues. He may even have some speech therapy – while his vocabulary is advanced, there are nuances of language that he has difficulty with, particularly the non-verbal aspects of communication, and these may be contributing to the physical outbursts of his that occur in social situations.
This past year, particularly the last six months, has seen a significant diminishment in the variety of outside activities Son has engaged in. We’ve essentially withdrawn a great deal due to the escalation of his behavioural issues. Despite the stereotyped belief that homeschooling means spending most of one’s time alone at home, we used to be pretty active outside the home and the kids enjoyed a variety of experiences out in the community (skating, playground meet-ups, field trips, etc). When assembling a “support team” for an autistic child one is asked to outline the goals one has for the child and family. For us, the goal right now is to expand Son’s horizons. He wants this, too, and I am very pleased and excited that we are finally in a position to offer that to him.