Autism awareness

Last Saturday was Autism awareness day, or so I have been told.  I have also heard that April (the month of the fool) is autism awareness month.  

As I write these words, my son is in the room with me. He is in the process of sundowning. It is late before bed, and he is varying between moments of silence and hyperactivity. He is using a deep voiced echolalia, and varies between a whisper and a shout. He is starting to sound raw from yelling. He is running back and forth on the main floor of our home, his steps thundering through the house. I have a growing headache that has become a common feature for this time of night.

I will be using some words many find offensive. You have been warned. Also, this post will be long. Quit while you're ahead.

What is autism awareness day to the families of the autistic?

I myself stand in no need of this day, or this month. I cannot be any more aware of autism than I already am. It is my last thought before I slumber, and the first when I rise. To be informed that this time has been set aside to make people 'aware' of autism brings me no comfort. I feel perhaps a dim shadow of what Frederick Douglass felt when he was asked to give a Fourth of July oration in 1852, in which he asked 'Do you mean, citizens, to mock me?' This is your day, he said, not mine. But if it is awareness you seek, I can share a little of mine with you. Take it for what it is worth.

Before we begin, let's clear up some misconceptions. Forget literally everything you have ever seen or heard about autism in the media. There they are almost always used for dramatic effect. They are all savants of some sort, and they always hold the key to the puzzle, the ability to crack the code, or they can play the instrument or something. These are rare, and this is not the everyday experience of autistic families.

Let us begin with the word: autism. The root of the word is the Greek prefix 'auto', which means 'self'. But it is a prefix without a follower. It does not lead into another word, say autodidact (self taught) or automobile (self moving). The word begins and almost ends with self, save the ism, denoting an idea or condition. The autistic are identified as those who are locked in themselves, a self bound upon itself.

In an odd parallel, there is another common word in our language that begins with another Greek word for the self- 'id'- in this case 'idiot'. The idiot are those who seek only their own council, and follow not the wisdom of their betters. Though the words may seem somewhat related in that sense, they are not. Indeed, one of the greatest plagues of the autistic and those who love and care for them are idiots.. They too are part of the daily experience of autistic families. Here are some of the things nice, ordinary, caring people have told me over the years in regard to my son:

'You are ruining that child!'

'If that were my child, I'd...'

'Why are you raising your child to be racist?' (Long story.)

'Would you mind taking your child somewhere else?'

Ordinary people, who could have chosen to be supportive, or understanding, or even indifferent, decided instead to be both cruel and stupid. And here you have the difference between the autistic and idiots: no one chooses to be autistic, but these people chose to be idiots.

Autism is not a single condition, but a spectrum of interrelated conditions. The spectrum is broad and constantly growing as the definition shifts and changes. Like the spectrum of colours, when gazed upon as a whole, one can see how each colour blends and fades into the next, but when the individual colours are looked upon in isolation, the connection between them is lost, as blue has nothing to do with orange, nor red with green, nor yellow with purple. And so it is here. The shy fellow, who will not look you in the eye and seldom speaks, is autistic. So is the person who invades your space, stares at you uncomfortably and cannot shut up at all. Opposites in every way, yet connected by a condition we have barely begun to understand.

It certainly wasn't understood at all in my day, but I am not certain how much better it is understood now. Back when I was young my son would probably not have been diagnosed as autistic. He probably would have been written off as having a form of mental retardation, been sent to the special education room, or retard room, as it was popularly called, where he would have been pushed through the system with no real hope of making any real progress, until he could be cut loose to a life of... somebody else's problem. Today, after decades of study, millions of dollars spent, we have made a change: people such as he are no longer called retards. Everything else, I am sorry to say, is pretty much the same. As far as I'm concerned, what they changed was the least important thing. If anyone could come and give my son some real help, effect a real change, they could call him retarded to their heart's content.

But help is elusive in the case of autism. One of the earlier forms of 'help' had its genesis in the death camps of Nazi German. Holocaust survivor Bruno Bettelheim noticed that, as a group, people who kept to themselves and avoided eye contact with others didn't do well in the camps. He set out after his liberation to study the problem. Before long, he set up institutes and began 'treating' the autistic. Word spread, and soon desperate parents were coming to him to cure their children.

It seems at first Bettelheim's motives were good, but then the money began to pour in. By the 1960's Bettelheim's notes indicated that he realized that he couldn't cure autism, but the money was too good. He kept at it. As a therapist, his followed the popular theory of the day: blame mother. Mother's were the root of autism. It was said at one of his institutes there was a statue representing motherhood in the central courtyard. Bettelheim invited his interns to urinate upon it. He also set up a home for autistic children. The abuse there was said to be horrific.

Following Bettelheim's death by suicide in 1990, other treatments and therapies came in and out of vogue. The '90's saw the rise and fall of electroshock therapy, where the autistic were jabbed with cattle prods to reinforce good behaviours and just generally shock the autism out of them. That is not an exaggeration- that literally happened. When the autistic began to become inured to the shock of the cattle prod, the 'therapists' tried machines that could deliver bigger and more painful shocks. The '00's saw autism treated through pharmaceuticals- very powerful pharmaceuticals with often terrible side effects.

Every couple of years the model for 'treating' autism shifts, usually with some recognition that the previous model was barbaric, with the caveat 'but this time we got it right!' We have been using a kind of behaviour modification through positive reinforcement. These kinds of movements depend largely on the parents to carry out the program. Sometimes there is some positive change. Sometimes the parents are so desperate to see something in their child they will see changes where there are none. Sometimes parents will see no change, and when they tell the organizers and experts this, they will be told that they (the parents) must be doing it wrong. Or they are not doing it enough. Because the program works. Trust us. We know.

The desperation that drives many parents also makes them suckers for quacks. You shouldn't trust Big Medicine or Big Pharma, we are constantly told. Instead, trust Big Vitamins! Trust Big Nature! They have been around all along. My wife and I have been contacted several times (once by the husband of a teacher. I wanted to have the teacher disciplined for giving out our phone number. That had to be a breach of their code of conduct.) by people who tell us that we can have our child's autism reversed if only we feed him their special blend of eleven herbs and spices- but it has to be their special blend of herbs and spices. You can't buy off the shelf B12- you must buy their superior B12, otherwise it won't work properly. It costs five times as much because it is worth it.

There have been more sinister forms of help. Recently, a group that is supposed to advocate on behalf of the autistic in Canada by the name of Autism Speaks! came out and advocated for an in utero test to spot autism in the womb. The only reason for such a test would be to abort the autistic- to eradicate autism the way Iceland eradicated Down's Syndrome. Debate that as you will, but it is strange, to say the least, that a group that purports to speak for the voiceless is tacitly saying they would be better off dead.

I also noticed today that the government is looking into expanding doctor assisted death- they even dropped the term 'suicide'- to the mentally ill. You may be certain that the autistic will be included in that.

The average lifespan of the autistic, particularly those in my son's categories, is about 36 years. Even that little span is too much life in the eyes of many.

And then there is the guilt. Lots and lots of guilt. We love our children, we say, and we wouldn't change them for the world. And we do, and we wouldn't, but that's mainly because we can't. If someone were to actually crack the code, come up with some pill that really worked, there isn't a parent among us who wouldn't jack open their child's jaws and ram that pill down their throat, will they or won't they. It would be for the best, right? But that would mean that we don't really love our children as they are, and that we do wish to change them for considerably less than the world. But we cannot say that out loud, nor even admit it to ourselves, and the guilt goes deeper and deeper.

So parents accept the children as best they can, try to change what they can, and live with what cannot be changed. But that is the parents. Others are under no obligation to accept our children, and very often they simply don't. In a sense, the modern world mocks us at every turn. How often have you seen a business, a restaurant, or a hotel with a sign out front gladly proclaiming that they welcome absolutely everybody? It sounds great, but the families of the autistic know it to be a lie, because we know from experience we are not welcome there. And we can't even blame them for it. Other people want to go out and have a nice, quiet dinner, a nice quiet sleep at their hotel, a nice quiet vacation at their resort. Businesses do not want customers who are disruptive, or who may cause damage to their property. And it goes deeper. Even finding a home can be difficult. If you are in an apartment building, townhouse or duplex, you had better have some very good sound proofing. Otherwise, if your child is anything like mine, there will be complaints about the noise, and you may find yourself forced to look for a new home.

As a side note, a while ago my wife and I discussed the idea of opening a different kind of B&B or hostel of some sort: we would cater to the autistic. We wouldn't offer them anything special- just a place to spend some time, and they wouldn't have to worry about getting thrown out. My wife mentioned this on an autism support board, and the response was remarkable. Many shared stories of the stress of trying to travel, worrying that their child may have a melt down and have them kicked out, or wondering where they'll go next year after they have been banned for life from this place.

So yes, we are loud and disruptive. We are not comfortable. We are not what you want us to be. The autistic have been drugged, beaten, conditioned to be anything but themselves, and most nice, caring people, would prefer that they stayed out of sight and did not interrupt and on the whole not bother them with their issues. That includes the ones who wear puzzle ribbons and share memes for autism awareness day/month. They may be rudimentarily aware of autism, but they do not accept it. Perhaps it is inherently unacceptable, but the efforts to deny autism and 'cure' it have lead to one abomination after another.

What is autism awareness day to me? It is a mockery, a twist of a cruel knife, a dose of salt in an ever open wound. Rather than an autism awareness day, I would with all my heart have an autism unawareness day, a day where it is not always foremost on my my mind, where I do not have to think of it. But such a day is not forthcoming any time soon, I think, or hope. If it were to come, it would come in the form of an autism acceptance, where others can accept the autistic as they are, and not desire to change them, or torture them into being more like everyone else, and can accept the occasional discomfort of living with other humans who don't always behave as you wish. If you cannot find it in yourself to accept them, I cannot blame you. Were our positions reversed, I would probably be as you are, and consign my awareness of autism to one single day of the year, and not bother with for the remaining 364. But recognize this: awareness goes only so far. In fact, it goes almost nowhere. If we are to go forward, then awareness must lead to acceptance of the aspects of the condition that cannot be changed. If the day begins and ends with 'awareness' and does not endeavour to come to something greater, then this day truly is a sham and a mockery, and to hell with it.

As it is, if you wanted to some awareness of autism, here it is. What you do with it is your own affair. Understand that autism is not a choice. But being an idiot, however, is. If you want to help, start by choosing not to be an idiot.