Sometime around 2000 I sat in a back room at Autism Victoria, reading autism publications from 1968. I soon saw that autism as an industry hasn't got us far at all. And it is an industry: at any conference see who's there. Professionals of many descriptions (psychologists, occupational therapists, psychiatrists, speech therapists, teachers, dieticians, natural therapists, kinesiologists, neurologists, pediatricians, sociologists.). Bureaucrats. Administrators. All there making much talk about autism.
There's the therapy du jour. The speakers of the moment. I've sat in a crowded dining room at these events, just watching them eat and wondering to myself: "Who are these people and where's the benefit? What's different from 1968?"
Well, only the names. Do you believe that autistic children are the offspring of "refrigerator mothers"? Have you pinned your faith in the MMR vaccine being the cause? Or "leaky gut syndrome"? Maybe mercury, secretin or thimoseral? All rubbish but all have had passionate advocates at one time or another. Some still do. Then again, some people still believe, despite all the evidence to the contrary, that the earth is flat.
Where at conferences do you see the people who work to the point of exhaustion? The ones who run the respite houses? The ones running accommodation and training programs for adults? DHS/DOCS case workers? Mostly, not there because they're either too busy or too exhausted. What's different from 1968?
The autism education sector, in particular, is very much an industry and often enough it's run on commercial lines. The other folk I've mentioned earn their livings from autism. And on this subject, I saw a nasty little piece aired a while ago, on ABC Tasmania's Statewide program about a group of early interventionists in Hobart who talked about "recovery from autism". They charged a great deal because they received no government funding and equated their very good early intervention with "recovery". Actually, that's not the case. It makes a heck of a difference, as does all good early intervention but there's no way it leads to recovery from autism because neither they nor anyone else can alter the structure of a person's brain.
While early intervention has progressed enormously since 1968, special schools in many cases have not. They weren't doing all that well when they were small and now that a lot of them are much bigger we see that quantity does not relate to quality, except as a negative. That being said, there are some special schools out there that are enrolling autistic children and not pursuing the autistic dollar. They agonise over whether or not the service they offer leads to meaningful outcomes for their students and are often great places to both work and be enrolled in.
Autistic kids who are perceived as difficult to deal with are turned away from some schools. I know because I sometimes have the pleasure of working with these individuals in the Human Services programs which are sometimes set up for them. Please don't tell me that's discrimination. I know. All schools have to say is that they don't have enough room. It's all they can say and it can never be disproved. Not that it matters all that much: the quality of education that such an individual might receive at home or in a DHS program could often be better than the school outcome.
I've followed many (and I mean many) autistic individuals through from early intervention into adult programs and watched as they've disappeared, mostly operating way below their potential, into the void.
Until recently, I saw that parent-based groups such as the Asperger networks in Victoria and Queensland were far more active and achieved more than the entrenched autism associations. In Victoria, at least, that's starting to change. Autism Victoria is employing more people and has moved to larger premises in a bid to make itself more relevant. I wish them well and hope they succeed.
I've watched it all for years and so far I'm not seeing that parents or autistic people are getting value for money out of mainstream conferences or autistic education. Not at all. Not remotely.
Do you perhaps subscribe to your autism association's newsletter? Why? You've noticed all the book reviews, haven't you and how their existence, stacking up year after year, makes a difference to outcomes for autistic people? Or is it that you've seen the pleas for parent participation from the myriad young hopeful psychologists who will one day present their findings at an autism conference near you, making an earth-shattering difference to outcomes and that's why you subscribe?
Have you attended a one-hour session at a school to learn how to cope with your autistic child? (Nice little earners, these!) And left more confused (not to mention considerably poorer) than before?
Or are you simply desperate? Desperate for something, anything, that will help your autistic child function at a higher level?
Early intervention is a wonderful thing. I have no doubt that the more your child has of it, the better his or her outcome will be. I know that so many autistic behaviours and rigid modes of thinking are forms of imprisonment and (following a metaphor here) I'm a great believer in giving hammers to small children and showing them how to knock down their prison walls.
The flip side to seeing so many kids go down the tubes is seeing some, just a few, make it in the adult world. I've seen autistic kids earn a living from computer sciences or computer mechanics, from photography, from making furniture, from becoming motor mechanics or website designers and even, in one case, from becoming a budding politician. Each time, these kids had someone behind them telling them that they could. Not forcing them, just holding their self-esteem above water by understanding their abilities and capitalising on them, sometimes in the face of concerted opposition from a "professional" who made an error of judgement when that person was an infant and who cannot stand to be proved wrong.
There's a fantastic example of success in Canada where an autistic person is operating a successful translation business. So successful that her brother quit his $40,000 a year job and is now earning more than double that as a translator himself. I've known her for several years and had the pleasure of watching her develop from being a naive farm girl, living in a caravan/trailer and being taken advantage of in so many ways (something not unusual to find during young autistic adulthood) into a city sophisticate, outwardly not autistic at all unless you know where to look. Or meet her children, all of whom she home-schools because she believes that the system doesn't meet their needs.
So I suggest this: wherever possible, do it yourself, whatever "it" might be. Form informal parents groups where you think that might help. Do your own research on the web. Read what people are doing in other parts of the world. Don't expect the government to provide anything; if it does, well and good but the disability field is very wide. Don't expect autism societies to do all that much.
Don't expect most government-run special schools to do anything. If they happen to help your child make progress, chances are it's a fluke. In most cases, the "education" they provide is simply derisory. There are some gifted and inspired special-ed teachers around but even if you happen to find one, he or she will only teach your child for a year or at most two. The fact is that most special-ed teachers are better suited to teaching obedience to dogs than anything to autistic children. Again, there are some inspired school principals around but in every case I've encountered, these people have been hobbled by entrenched, outmoded ideas within their senior staff. I've learned that this page is read by principal-class teachers in Victoria. Thank you. And thank you to whoever drew their attention to me, I appreciate it. There's just one more thing parents should know about special schools and it's this: if school personnel tell you "we are the professional educators" it means that they're trying to lock you out of your child's education. No matter what reason they give for doing it, this is what it means and they say it because the last thing they want is to account for the "education" your child receives.
You may encounter the messianic. Those who will tell you that you're failing your child if you don't enrol him in a ABA program, for example. Please be aware of two things: 1) there is no "one size fits all" approach to teaching autistic children and 2) autism cannot be cured. Simon Baron-Cohen and several others have successfully demonstrated the existence of an autistic brain and rather than include any links, I'll let you do the research. The results are easy to find. Or you may encounter parents who write only in capitals or end almost every sentence with an exclamation mark. I guess you know how to deal with them. If you're very unlucky, you'll meet people with Munchhausen's syndrome who claim to have autistic children where none exist. If you challenge them, their children will suddenly "be killed in a car accident" and they'll disappear for a while before reappearing under another name, both for themselves and their "child". But their song will remain the same and in this way you'll know them.
You may also encounter another kind of messianic, the global autism "expert". You will pay a fortune to hear these people and obtaining a diagnosis from one, if (s)he is qualified to give one, may cost well over a thousand dollars. Some of these talk well but do not work with autistic children (e.g., they won't sit on a tiny seat at a tiny table and interact with infants, let alone go out into a playground and join their games). Some talk well but only observe autistic children, if the price is right, but can't or won't interact with them. Some have a fixed presentation from which they do not deviate, some a few more. Some improvise and some plagiarise. That's right, plagiarise. I gave a presentation in 1997 at the New South Wales state autism conference and a very well known global presenter sat at the back. Next day, at this person's presentation, I was surprised to hear my own words used without attribution. I'm not the only one, by any means, whose words have been lifted. To my mind, this shows utter contempt for the rights of autistic people.
There are some good autism presenters around. These are the ones who are happy to talk for a small fee and expenses to any number of people large or small, who will answer any questions and won't give specific answers about your child's behaviour until he/she has met and interacted with him. Often, though, specific answers aren't needed. The American autistic, Jim Sinclair, typifies this kind of person. Not at all frightened to say what needs to be said, to challenge cant and incompetence and to refuse work if it means dealing with parents who are clearly idiots. There are Jerry Newport or Peter Vermeulen, to mention two more. How to find these people and others like them? Do the research.
Lindsay Weekes
Melbourne, Australia
May 2009