As some of you are already aware, I have an autistic son. (No, I’m not going to be politically correct and say he is a “son with autism”. Autism is an integral part of his identity. He is also very bright, musical, and incredibly sly. I don’t call him my “son with intelligence” or my “son with musical ability or trickiness”. Nuff said about that.)

Recent contacts with others have caused me to reflect a good deal on the special status accorded to experts - experts in autism, for example, or in general education. It seems we live in a world that has far too many experts, but oddly there are never enough to see that the folks with special needs get the care or assistance they need. We also suffer greatly from not having enough “regular” folks to go around. Not enough family doctors, not enough classroom teachers, not enough nurses in our hospitals to cover all the shifts without the government imposing mandatory overtime. It’s quite a paradox: not enough regular joes to meet our needs, and still not enough experts to see that a person in pain gets prompt testing & treatment.

If you have ever questioned the wisdom or authority of some expert, somewhere, you’ve probably been given a pat on the back by a friend or family member, or even by a stranger you’ve crossed paths with briefly. “You’re the expert,” they’ll say. “You know best for yourself (or your child, as the case may be).” There are a lot of people out there who are fed up with the system, but it takes an awful lot of energy and sometimes courage to stand up for yourself & your family. Especially if you reject the advice of the experts.

Reject it outright because you don’t see the logic in the course they prescribe, and you’re a crackpot. Ask about alternatives, and it’s sad you’re being taken in by charlatans. Respect it in theory, but tell them it doesn’t seem to be working for you personally, and you’ll be considered uncooperative.

There is a social hierarchy that places parents of young children, and people in need of assistance on the very bottom rung of a tall ladder. Over the years I’ve encountered a lot of smiling people who have gazed at me in the most sincere way and said things like, “You’re so brave” (You really think I have any choice?) or “We consider parents to be an integral part of our team” (then they proceed to tell you what is best for your child, and the only feedback they seek from you is to grill you on whether your home life is harmonious with their plans…) I don’t know, I think sometimes these people mean well. Sometimes I think I’m being “managed” as much as my son is, and their grins seem permanently fixed on their faces, as though held there with crazy glue.

That hierarchy really is a ladder, though. I remember going to an autism presentation given by a very famous expert who believed he had pinpointed the structural difference between a neurotypical brain & an autistic one. Although the presentation was rather technical, it was intended for parents and other “care givers” of autistic people. Naturally, the question period eventually drifted into more practical, everyday questions that had little to do with the topic of the speech. Hey, when a famous expert visits it’s natural to seek out his advice about anything & everything that might help our kids!

One of the parents asked about the therapeutic options - what was the best option or combination of therapies for his son. This expert’s answer was that the only really viable option for any autistic person was Applied Behavioral Analysis (ABA.) Surprised, the father mentioned a few other possible modalities, but the doctor’s answer was emphatic: no other method was worth pursuing. We bumped into an occupational therapist (OT) we know afterwards, and she was rather peeved about him passing judgement on all other treatments that way.

Autistic people usually benefit from a pretty wide range of therapies and services, that may include ABA, sensory integration & other OT modalities, speech therapy and assisted communication, art & music therapy, movement, social stories, and much more. But as far as the expert was concerned ABA was the only way to go, and at the moment it’s the only therapy that is being backed in the lobbying of governments to recognize thrapies for autism as medically necessary and to fund or subsidize them so all autistic people can access them.

For the record, we’ve seen benefits from a pretty good range of services - and from regular activities that we’ve done with our other kids too. I also feel a lot of the progress our Bug is making is the result of time and patience and love. Autism is what’s called a pervasive developmental delay (PDD.) A delay. So he’s slower at reaching certain milestones than the average kid. For all we know, he may have reached these milestones without any specific therapy. Or maybe they helped him get to where he was already going, just a little faster. Or maybe, they just help us to cope with his differentness a little better. I don’t know. I can say that because I make no claims at being an expert.

The experts lay out a picture of how we should be, and we’re all expected to squeeze ourselves into it. If we’re the wrong body size or shape, we need to change that regardless of the associated health risks. If we don’t communicate the way they want us to, we’re either labelled uncommunicative or forced to learn to do things their way. If we don’t learn the way we’re supposed to, they penalize us for it. If we want to choose how and what we will teach our kids, there’s always someone breathing down our necks and assuming we must be “up to something.” The assumption is always that there’s something gravely wrong with us, and we need to be fixed.

My husband came upon this video today. We had been sent some web content created by Amanda Baggs some time ago, and I immediately recognized her in the video. She is an incredibly articulate person, and as I watched a selection of her videos I was impressed with her creativity in delivering her message. If you are interested in ASD, or special needs in general, it’s worth your time to visit her blog and to view some of her other videos.

[youtube=http://www.youtube.com/watch?v=JnylM1hI2jc&rel=0&color1=0×234900&color2=0×4e9e00&border=0]

It takes all kinds of people to make the world go around. If you are in some way different from the “typical” person, you are your own expert. If you are the parent of a special needs child, you are the best expert he has - outside of himself. It’s not always easy to figure out what your child needs to be able to be happy or to fulfill his potential, but then again if you’re a more or less average adult, do you think you are always clear on what you need to be happy and feel fulfilled??

The most we can hope to do is to educate ourselves and to keep the best interests of our kids at heart. Try to use whatever communication they offer when we need to make decisions about their health or their education, and trust our gut instincts when logic fails. Even the most celebrated experts don’t know any of their patients or clients the way we know our children!

Yes, it is easier to “just fit in.” And sometimes we will choose to teach our kids to do just that. It can become tiresome to spend half your life explaining why your kid wears a special vest, or why you’re homeschooled, or why you flap your hands sometimes. It can be easier to hide the vest under a sweater, to avoid going out during school hours, or to learn to use a fidget toy instead of flapping. The thing is, that’s an intensely personal decision that needs to be made by a child and his family. It’s not for someone else to dictate what we’ll accept and what we need to change in order to cope with the world.

If any experts are reading this, I know you often get frustrated because parents ask you for help & advice, but sometimes we seem to drop the ball or to be doing the opposite of what you recommended. I know that sometimes you just don’t have answers to our questions, and we get frustrated with you because experts are supposed to be able to fix things for us. I know you have to deal with all sorts of red tape, with lack of funds or resources, with changing winds that can cause the plug to be pulled on a valuable project for political reasons. And I know that a lot of you became the experts you are today because somewhere along the way, you were touched by something that made you wish you could wave a magic wand and “make it better.”

If this describes you, try to stay human. Your circumstances have led many of your peers to become less than humane - or to believe they are superhuman. If you don’t have any kids of your own, you might want to consider it. There’s something about being the playmate, disciplinarian, medic, teacher, pack mule, taxi driver, chief cook and bottle washer to even just one being under the height of four feet that forces you to develop a good variety of skills - and a certain amount of humility.

I leave you with the words of Lazarus Long, who I think spoke wisely about spending too much time building up an expertise in any one area:

A human being should be able to change a diaper, plan an invasion, butcher a hog, conn a ship, design a building, write a sonnet, balance accounts, build a wall, set a bone, comfort the dying, take orders, give orders, cooperate, act alone, solve equations, analyze a new problem, pitch manure, program a computer, cook a tasty meal, fight efficiently, die gallantly. Specialization is for insects.
~ Time Enough for Love, Robert Heinlein

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