It’s April, so…

…according to the somewhat optimistic promise on the button that you may have noticed on the left of my blog, I am now supposedly blogging for autism awareness. 

You may also have noticed that I don’t, so far, appear to have been living up to this promise.  This is not for lack of trying, but, as usual, for lack of spare time – I have spent the month so far trying to work on this post while feeling that blogging for autism awareness is something I might be able to see my way clear to finding a few minutes to do some time around, oh, say, September.  Of 2009.  Possibly.  But there is currently at least some of April left, so here is my first stab at a Blogging For Autism Awareness post.

If someone with a handy crystal ball had told me, a few months back, that I would be Blogging For Autism Awareness This April, I would probably have been fairly surprised.  I do not mean that in the "I never expected to find myself dealing with the world of autism" sense (that, I’d completely expected) – I mean that I would have been surprised at the idea that I’d think blogging for awareness was something to which I could productively contribute.  People already are aware of autism – everybody’s heard of it, haven’t they?  I wouldn’t have had any particular inspiration as to what I should say to increase this awareness.  "Hey, everyone!  Did you know that some people are autistic?" doesn’t really seem like a promising beginning to pad out to blog-post length.

After all, everybody knows the important stuff about autism.  Right?  We’ve all read the newspaper articles and the magazine stories and the heart-wrenching True Life stuff about Our Autism Nightmare or My Child’s Terrible Affliction.  So we all know about autism.  Don’t we?  Helpless, hopeless, a life-destroying disaster that renders a child incapable of enjoying life or doing any of the things normal people do, unaware of what’s going on around him, and, barring miracles, devoid of hope for any sort of future.

In other words, the general public thinks about autism in pretty much the same way as it used to think about physical disability.  A few decades ago, that last sentence would have exactly described the kinds of attitudes a child in a wheelchair would have to face.  People talked about them as though they weren’t there, assumed they were incapable of learning, working, or contributing usefully to society, and wrung their hands over the tragedy of it all.  Disabled people tried to point out that they’d actually vastly prefer it if everybody else shut up with the pity and the stupid assumptions and got on with something useful, like building ramps, but unfortunately nobody really seemed to want to listen.  Which, of course, is still the case to a depressing degree.  But, in general, society’s attitude towards the physically disabled has improved a hell of a lot over the last several decades.  There’s still a long, long way to go.  But if you heard someone today describing children in wheelchairs by gushing about what a tragedy it was, how awful it must be for them to have such hopeless lives, and how awful it must be for their families to have to bear such a burden, then you’d probably recognise that they were being both ignorant and offensive.

When it comes to the autistic, however, we think absolutely nothing of talking that way about them.  It’s standard phraseology for any story about autism.  How often does it ever occur to any of us that we might be just as wrong – and causing just as much offense – as we would be if we talked about other forms of disability in that way?

Over the past few months, I’ve been reading a lot about autism, browsing through weblinks.  At first I was just trying to brush up on my knowledge of diagnosis and current treatment approaches, and the stuff I found when I Googled was pretty standard stuff along those lines – DSM criteria, early signs to look for, applied behavioural analysis therapy, biomeds, yadda yadda yadda.  And then, gradually, I found more and more links to webpages and essays that challenged a lot of the traditional views about autism and its treatment.  Quite a bit of the stuff I was reading was from autistic people themselves – the very people that we’ve always thought to be incapable of communicating.  They’re voicing their opinions, loud and clear, on just what they think of society’s attitudes.  It makes fascinating, thought-provoking, challenging, uncomfortable reading.  Turns out we’ve assumed a whole lot of stuff about autistic people that’s wrong.

We’ve assumed that, because autistic people have a hard time speaking and often can’t learn to speak at all, that this must mean that they can’t communicate.  In fact, lots of them can learn how to communicate fluently in other ways – just as a deaf or paralysed person might find it easier to use communication tools other than speech, so can autistic people.  Many can type far more articulately than they can talk.  Others might benefit from using picture card systems.

We’ve assumed that, because autistic people don’t seem to react to their surroundings, this must mean that they’re not aware of them.  In fact, it seems the lack of reaction is more likely to be due to lack of processing/reacting skills than to lack of awareness – just as a totally paralysed person can hear everything you say despite not being able to respond to it, so too can even a severely autistic person.  (And… you know all those times people talk about what an awful burden it is to have an autistic child or how autism is some kind of terrible living death?  Yup.  If you’re talking that way in front of an autistic person, or writing that stuff in a newspaper that they can read, or putting it on a television programme where they can see it, then that person is probably listening and understanding.  And is probably just as hurt and offended by having their life described in such a way as a non-autistic person would be.)

We’ve assumed that, because a life looks different from ours, it must not be worth living.  We’ve assumed that autism is a terrible affliction and that the only hope for people thus afflicted is for us to come up with A Cure, something that will get rid of that awful autism and let the person be just like everybody else.  In fact, it seems that most autistic people don’t want that at all.  What they want is to have practical help with dealing with the ways their disability impacts on their lives, help that starts from the point of what they actually need rather than from an assumption that the most important thing is for them to look as normal as possible.  To be allowed to be different, as long as those differences do not harm others.  To have their opinions listened to.

As I read more and more on those subjects, I was amazed and excited and saddened.  Amazed by how little I’d really known about autism, after a lifetime of interest in the subject.  Excited by all that I was learning.  And saddened that these issues aren’t far more widely known about.  The growing popularity of computers and the Internet mean that autistic people have more chance than ever before to let people know how they really feel about the way that autism is portrayed in society and about the treatment (in both senses of the word) that autistic people get.  But very few people know that these things are even issues.  In fact, the impression I’ve been getting is that a lot of people aren’t even interested in hearing more when autistic people try to tell them.  People don’t want to listen.  But we need to.  Otherwise, autistics will continue to be short-changed.

So that’s why I’m blogging for autism awareness this April.

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19 Comments

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19 responses to “It’s April, so…

  1. Well put! I have had some similar attitudes expressed about speech and language disorders (which I research). Worse, some of the research into autism seems to be aimed at prenatal diagnosis – so we could “get rid of” the problem once and for all…

  2. Well I for one, am very glad that you are.
    Best wishes

  3. beth

    Elizabeth Moon, mother of a man with autism, wrote a book called _The Speed of Darkness_ with an autistic protagonist. The book is set a bit in the future, so most children with autism are recognized and provided with therapies to help them function as independently as possible. The main character works with other autistic people; their company, a big insurance(?) firm provides extra support aimed directly at them (an exercise room, etc.) Then a “cure” for autism is developed — the meat of the novel is the decision of our hero and his friends as to whether or not to take the cure, whether they will stay themselves across such a drastic change, whether the chance to widen their choices is worth it. People make different choices, and it’s not a simple decision.
    Anyway, it’s a fun read and a nice way to slide in information about autism without lecturing.

  4. Sidheag

    “most autistic people don’t want that [for a cure to be found] at all.” Do you have any basis for that (to rule out, for example, that the ones who do want a cure don’t show up in your web browsing, perhaps because they can’t find a way to communicate)? And if you do, should it stop anyone looking for a cure? I, tentatively, think not.
    I think the comparison with physical disabilities is inept in that regard: few people with physical disabilities, or their parents, would be against finding cures for their conditions. Autism is different in that it affects who someone is much more nearly, so that the person concerned, and those who love them, cannot imagine a cure that wouldn’t involve taking away the person they love. But if that autistic person had been cured the day after they were born, then the cured person would have been equally loved, and might say, equally fervently, that they were glad they’d been cured. (And, let me say it, in for a penny in for a pound, they might be economically and socially more productive members of society, and why shouldn’t we think that a good thing?)
    A better comparison is probably with Deaf people, where there have been some famous cases, or at least discussion of hypothetical cases (I’m not sure which are which) of Deaf people wanting IVF with pre-implantation genetic testing so that they can ensure their child will also be deaf, or declining for their child the offer of a cochlear implant (not out of concern that the technology isn’t good enough yet, but on grounds that would equally apply if it gave perfect hearing).
    I don’t deny that the issues are complex and that what autistic people say about autism is important, nor that it’s vital that autistic people are respected and not equated with their disorder. I just don’t think that’s the same as saying “autistic is just as good, only different, and we should stop looking for a cure”. I don’t think it’s as good, and I wish there were a cure.
    Well, that should spark your next post, maybe 🙂

  5. Liz

    I read this with a great deal of interest – especially as I am currently involved in a discussion elsewhere about “other mothers” – those who have experience of a different kind of mothering, and who find themselves silenced. I am very glad of your voice in these topics, as you are not in the hand-wringing what a tragedy camp. What you say is very refreshing. You see, and focus, on what is “normal” in your son, not what separates him. There is a lot of truth in what you say. I am, as the mother of a brain-damaged daughter who is now an adult, only too aware of the effect of the negative attitudes you delineate. As you say, things have improved for people with physical disabilities. The various myths around autism (and, to some extent, Down’s Syndrome) can be problemmatic – some positive mixed in with the negative. But, though my daughter is physically disabled by cerebral palsy, my main problem is with the category “Learning Disabilities”. I suppose it is an improvement on the old “mental handicap” but it drives me mad that children like your son, my daughter and people with diagnoses that have nothing in common are lumped together in a “one-size fits all” approach. I find it a bit of an outrage that Autism is classed as a “mental illness” ???? This summer, I had to try to find a class for my daughter to attend. It was very depressing that in a city as large and wealthy as London, the provision was appalling. You are young and at the start of this journey of discovery. I think your voice and approach is very welcome.

  6. Liz

    Reading your message again, I am struck by the last line. You say “People don’t listen. We need to.” It is your pronoun that strikes me. I have been very fascinated and encouraged by your positive attitude to disability – as explained in an earlier post about ante-natal testing. Especially given your profession. Clearly, your son’s disabilities, if we are to call them that, are only a very small part of who he is. So you may, indeed, because of that and because of your own personality, be able to count yourself withing the “we” of the population who do not have personal experience of the issues. But I am afraid that as far as “People” are concerned, when you got a diagnosis you also got disqualified from that world, and your “we” is now “those of us who are battling the system, those of us who know how appalling it is, those of us who are not heard because we no longer qualify as “People”. Maybe that disqualification is, after all, optional, and you can refuse it. You are in a position to try, and God knows I hope you succeed. But once you step into the world of action groups and protest, you can find that the only people listening are those in the same boat. Not many amongst those “people” who are not personally involved. wants to know, feeling happier with comfortable assumptions and ignorance.

  7. Wow. I’m going to be totally unimaginative and copy everyone else when I say: well put indeed! I’m only a humble assembly-line 3rd-year medic, but I did my dissertation this year under one of the world’s foremost experts on autism, and I came away very very enlightened indeed. My view of autism and people with it (I don’t even use the word “sufferers” anymore) has been completely changed, and I’m looking forward to doing research on it sometime in my career. Then again, not everyone gets to do an autism-related dissertation, so the rest of the world will just have to read you to get their epiphanies! 🙂
    Keep it up – I’ll be back.

  8. Thanks for the comments, everyone!
    Sidheag – Point taken about the likelihood of sample bias. With regard to the whole issue of cure, I do indeed plan another post on that, although who knows when I’ll get it written (maybe for Blogging For Autism Awareness *next* April?) In the meantime, if you read this, a question to ponder – what would you think about the idea of finding a cure for Down’s syndrome?
    Liz – I count myself among the ‘we’ of the population who make assumptions and who have insufficient knowledge, and I’m trying to make that a thing of the past rather than the present. I’m not under any illusions that I’m going to turn society’s attitudes around singlehandedly, but what I do hope is that I can make other individuals think, just as the people whose writings I’ve read have made me think.
    And, to everyone else – thanks so much for the encouragement and positive comments!

  9. K

    I find it very frustrating reading this. I don’t understand why people with autism do not think they should be cured. It seems very selfish, but then I read that they cannot understand that other people really exist, so perhaps the selfishness is part of the autism. There’s another story in the press today about an autistic boy who attacks people and smears faeces on the walls. What’s so great about that?
    I don’t know anyone with autism. I find this very hard to understand.

  10. K: Thanks for your thoughts. I’m planning a longer post on this issue, so I hope you’ll stick around and read it and let me know what you think. However, to explain briefly here: I don’t think anyone is trying to claim that they shouldn’t have help in managing the parts of their behaviour that are a problem to themselves or others (which often includes others becoming more understanding and not pushing the autistic person so far past their comfort zone that they’re unable to control themselves or refrain from lashing out). The problem is that the idea of being ‘cured’ is based on the assumption that autism can be separated out from the rest of the person and made to go away. Autism is a description of who that person is, and how their mind works.

  11. Oh, forgot to add – I think you’ve been misinformed on one point, or have misunderstood. Autistic people do understand that other people exist. They just find it hard to understand non-autistic people’s thinking processes (just as non-autistic people find it hard to understand autistic people’s thinking processes).

  12. Sidheag

    What would I think about a cure for Down Syndrome? I would be jubilant. We tend to get given a very rosy picture of DS, smiley babies and contented adults and all, and people think of it as a disorder that *only* (or should that be “only”) involves mental retardation and characteristic facial features. Actually, as I’m sure you know, a multitude of serious physical illnesses are strongly associated with it; heart problems, often necessitating heart surgery, maybe repeated, in early childhood; seizures; predisposition to leukemia; increased susceptibility to infection, etc. etc. Around 15% of babies born with DS die in their first year, even now; and those who do live to adulthood have not escaped, since people with DS also often age young, including high rates of Alzheimer’s at relatively young ages. How could one not want a cure? I submit, only by romanticising, from a position of strength, the cuteness of those who have it. Which of us would choose to have DS ourselves? To go even more controversial, I would have aborted if my son had been found to have it, with sorrow but with no hesitation, and I do not think those mothers who would rather put their children through DS than deal with the emotions associated with abortion are heroines.
    Ask me a harder one! There is, lurking, a question that I’d find hard to answer, I’m sure, but this wasn’t it. It would concern where exactly the line is between “this person has a disability or an illness” and “this person is not very much like me”. For example, suppose there were a drug that could be given at birth which, by enhancing certain brain functions, would ensure that the baby’s IQ would be at least 110, and suppose for the sake of argument that there were very good reason to believe that it would have no other effects whatsoever (including, if the baby would have had an IQ of over 110 anyway, it would do absolutely nothing). Should such a drug be licensed? Offered? Pushed? Made compulsory? I feel fairly confident that I think it should be licensed, and fairly confident that I think it shouldn’t be made compulsory, but even at those two ends I’m not absolutely sure what I think, and in between, well, that’s too hard for me, I retreat to “I’m not an ethicist, and this kind of question is why”!
    (I *do* think that some degree of educating children should be compulsory; for example, although I think home education is best for some children, some of what I read on home education mailing lists disturbs me, and my on-line friend who is using creation “science” materials with her home-schooled children disturbs me greatly. So what’s the crucial difference between mandating a basic minimum of education, which I’m saying I’d do, and mandating my hypothetical drug, which I said I wouldn’t do? Umm…)
    What do you think?

  13. K

    Sarah V. – I’ll try to come back for your later articles. It is something I’m interested in, and I find it very hard to understand the argument against curing it. I’ve read posts on this topic at nhsblogdoc, and I don’t think I’m any wiser.
    I read that one autistic person typed out something like “why do people care more about how I say something than what I say?”
    If the process doesn’t matter to her, why should she object to being “cured” so she could talk instead of typing on a machine?

  14. Liz

    And what if there were a pill that made people less judgemental, less inclined to define other people as selfish? Anyone think that might have wide take-up?

  15. K

    Liz – if I were selling that pill, that’s not how I’d advertise it.

  16. Liz

    But what is it that makes you believe that it is avoidance of abortion that makes a mother decide to have a child with Down’s? I think it is a lot more complex than that. Some of us believe that it is a narrow and intolerant definition of “disability” that is the problem. A pre-natal diagnosis of Spina Bifida can, as far as I know, tell you little about the actual quality of life, and some of us feel that disability should not so easily be equated with a death sentence. I haven’t found myself in that position, and have no idea what I would decide – so I don’t presume to know what others should decide either. Many Down’s children come as a surprise to their parents, as there were no obvious risk factors. Should they go through life knowing that people assume “Too stupid/selfish to have an abortion”? I am wearily aware that in today’s everyone for themselves society disability is regarded as an affront and a burden on the “tax payer” by some. Me, I think a society should be judged by how well it takes care of those who need care.

  17. April bloggers bring May offers
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