Whose Planet Is It Anyway?

Monday, November 05, 2007

What a Difference a CEO Makes

Yesterday, an Associated Press article suggested, quite sensibly, that today's increased number of autism diagnoses is the result of cultural and diagnostic changes. The article pointed out that many behaviors now described as autistic would not have been categorized as such in the past:

(these) behaviors were just about as common 30 or 40 years ago. The recent explosion of cases appears to be mostly caused by a surge in special education services for autistic children, and by a corresponding shift in what doctors call autism.

Autism has always been diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. For decades, the diagnosis was given only to kids with severe language and social impairments and unusual, repetitious behaviors.

What caught my attention was not just the content of this story—the same observation about autism prevalence has been made many times before. Rather, it was that MSNBC.com was where I first saw the article posted. Yes, I'm talking about the erstwhile lair of Bob Wright, former NBC chief fired in February for blatantly abusing his corporate position to hype Autism Speaks, who never met an autistic person he didn't think should have been eugenically "prevented."

Not only was the story posted on that website, which is a considerable improvement in itself from the sort of autism reporting that appeared there last year, it was Sunday's featured article. Moreover, the page did not display the "silent epidemic" propaganda link that, until recently, infested all autism-related stories on the site.

I'm surmising that the new management at NBC is coming to the belated realization that if there are indeed two million autistic Americans, many of whom did not have any diagnosis as children and grew up to be wage-earning consumers who are integrated into mainstream society, it's not the smartest corporate strategy to offend this significant number of potential viewers (and their families) with bigoted stories characterizing them as a plague and a burden.

That should have been a matter of common sense (and basic human decency) from the beginning, but I'll give NBC my congratulations for finally getting it right.



  • There are no autistic adults who were not recognized as such as children. Any adults who are being diagnosed with autism are simply weirdos or they would have been diagnosed by age 3. Autism can never be missed by anyone.

    The behaviors were not diagnosed 30 or 40 years ago because people with those behaviors did not exist.

    By Blogger John Best, at 3:01 PM  

  • I saw the article yesterday, and did indeed think think that it was nice that someone was "getting it right", but it didn't dawn on me then that it was MSNBC.

    That does make it huge.

    By Blogger Club 166, at 4:51 PM  

  • Yes it is refreshing. Are we beginning to witness "evidence based journalism."

    By Anonymous Anonymous, at 5:19 PM  

  • What a great read. It's a nice change from some of the stuff I've read.

    I recently found your blog and I'm very glad I did.

    By Blogger michele_k, at 1:14 AM  

  • I can think of three adults I know personally, that live quite normal lives, married with children and jobs--that now days would be diagnosed as autistic but 30 years ago they were just "quirky". One of them is quite the ladies man. He does not try to be, the ladies are just attracted to him. LOL.

    By Blogger A Bishops Wife, at 5:53 AM  

  • Good that NBC has come around to reality. Could there be hope that John Best will ever do the same?

    By Blogger Suzanne, at 10:37 AM  

  • There are no autistic adults who were not recognized as such as children.

    Do you like making a fool of yourself, John? I've lost count of how many times I've referred you to Nylander & Gillberg (2001).

    Now, who should we believe? The baseless assertions of John Best, or the results of an actual survey?

    By Anonymous Anonymous, at 5:10 PM  

  • The article sounds promising.
    I would like to clear up what ForeSam said about needing a diagnosis by the age of three. For those who are wondering, this is false. What is needed for a diagnosis of what the DSM IV terms autistic disorder are SIGNS before the age of three. With what the DSM would class as Aspergers and PDD -NOS (atypical autism), whilst there may be signs before the age of three, it may not be definitely apparent until several years later.
    The fact is, is that a diagnosis can only be given if the parents/caregivers consent and agree that there is a reason to seek a diagnosis. Many parents with very young children adopt a "wait and see" policy, I know that before my older son was diagnosed this was the general consensus given to me and indeed I might well have waited if a couple of health visitors hadn't practically insisted I get him referred for assessment. As it turned out, when he was diagnosed at the age of two years nine months we were told it was pretty clear he was on the spectrum, but had I waited another year woudl that have discounted his diagnosis? I don't think so?
    And what of myself? Does the fact that I didn't get my Aspergers diagnosis until the age of 31 mean that I sauntered through my previous years with no-one believing there was owt different about me? I'm afraid not. As a child I was noticed as different by my parents, my teachers, by paediatricians, by other grownups and by children and teenagers my own age. There were calls by at least my dad and a few paediatricians for me to be assessed, but given that this was back in the 1980's I doubt that Aspergers would have been the diagnosis at the time. My mum didn't want a label placed on me, she didn't know why I was diffeent, but she knew that I was and she's admitted that she was adamant she didn't want people to think I was abnormal. This was in Northern England at a time when in our area it was considered highly unusual for even an adult to see a psychiatrist or a therapist, for example. Furthermore, there wasn't the benefit of the internet, with various factors like parenting groups which allow a querying parent to find out what's considered normal and what isn't. (Ok, technically I think it existed, but certaintly not to the extent it does today). So, my parents knew that I rarely initiated talking, that I spoke too fast when I did, that I couldn't make eye contact, that I often daydreamed or failed to respond to people talking to me. They knew that I had strong interests (ok, ok, obsessions :D) that I could not be diverted from. They knew that I was a runner/escapee as a young child and that, combined with my strong tantrums, ensured that my mum at least was known throughout the neighbourhood as poor Mrs X. They knew that I liked to tear up paper and chew it, that I loved to flap my hands, that I seemed to have little awareness a lot of the time of what others were doing around me (I never noticed the fact that people would stare at my handflapping for a start). They knew that I mildly selfinjured, sometimes because I was upset and sometimes because (and I can't understand this myself) I wanted to see the under layer of skin if I scratched the top layer off (insert vomiting smilie). They knew I had poor co-ordination and poor motor planning. There are loads of other things but I've waffled on for long enough. But what they didn't realise was that all these things were connected. My mum has told me that, if I were a child now, she wouldn't hesistate to have me assessed now, but at the time, with so little understanding, she feels in retrospect she did the right thing. But, basically, because they knew but didn't tell me and I knew that I didn't fit in but didn't know why and didn't think to ask why for years, it meant that my diagnosis only came fairly recently. In retrospect I know that I've had depression which, had I been able to go to the doctors about might have ensured an earlier diagnosis (even if it was a wrong one) but since I still struggle to ask for help with things then that ensured I didn't enter into the psychiatrical system.
    Apologies for this novel, I just wanted to explain one set of reasons why someone might not gain an autistic spectrum diagnosis as a child.

    By Anonymous Anonymous, at 5:20 PM  

  • Bullet,
    It seems you got your kid diagnosed because the problems were obvious at a young age. That's the way autism is. It's impossible to miss it. These people who get diagnosed as adults are mostly weirdos looking for an excuse for their weirdness. There are all sorts of gay people deciding to become autistic. As long as they have one mental illness, I guess they figure it's good to acquire another one. It gives them one more place where they can fit in.

    Of course, there are some people who actually do have a problem and should be given the Asperger's diagnosis, then chelated and cured so they can enjoy their lives. But, what you never see is adults who have never talked, never learned to use a toilet, never learned to read or write and smeared feces all over the house thousands of times all of a sudden being diagnosed with autism. Anyone could be diagnosed with Asperger's today with all the idiotic people like Simon Baron Cohen handing out diagnoses and people diagnosing themselves from internet tests. It's ridiculous. Even LSD abusing new age hippies go from being diagnosed with schizophrenia to becoming elves to catching autism. Nonme of that nonsense has anything in common with kids who can't function at all and never could. Autism can never be missed.

    By Blogger John Best, at 10:13 PM  

  • I think that, whatever levels of skills and difficulties a person o nthe spectrum has, if they are then somebody (usually the parents and later the teachers) will notice there is somehing different about them. But there can be a whole host of reasons why even a person who you, Foresam, would diagnose as being severely autistic wouldn't get a diagnosis by the age of three. I know of one woman whose lad is 12 or 13 now. He's practically non verbal, has maybe two sounds to ask for a couple of things. He attends an autism specific school and, until very recently, needed one to one tutoring on his own as the other children would distress him. He used to smear (has stopped now) and when he gets upset he resorts to selfinjury and by kicking and pinching others. In short, Foresam, he is the very model of an autistic child that you portray. Do you know when he received his diagnosis? At the age of four years.
    Speaking personally, your failure to understand that someone can be happy as they are reminds me of my older sister, who perhaps is my polar opposite. She likes clubbing and Djing, I'd rather be sat i na quiet country pub with a pint of Black Sheep Ale. She loves having parties and friends round, I'd rather talk to one or two people (though I did go to a party recently), or sit reading one of my old Victorian books. She loves shopping, the thought of venturing out to compare colours and fabrics fills me with a cold dread. She can say to a waiter if the food isn't good, I jsut sit there choking on it. The fact is, is that if I was to say to her "come and live my life for a month" she'd be climbing the walls in desperation and boredom, because, yes, SHE would be bored. But if she said the same to me I'd end up hating it as well. Does that mean I tell her her life isn't valid and doesn't have meaning, that she'll never know, for example, the joys of finally finishing a history research project? Of course not and neither does she tell me my life doesn't have meaning. We both accept that, though very different, our lives have equal worth. Are there things that impact on me in a negative way? Absolutely, I'd be lying if I said they weren't. But I've got people aound me who understand me, who help me and who understand that, in the same way you wouldn't expect an NT person who was suffering from depression to eradicate every single aspect of their NTishness, the people who understand me try to help with things that do impact negatively, like not being able to throw things a lot of the time, or not being able to ask for things I need a lot of the time, wehilst at the same time understanding that thigns like stimming, or how I live my life aren't a problem.
    And for the record I do think it's helpful to get a formal diagnosis, if only to be sure, but I know that lots of people worry a formal diagnosis would cause difficulties for them in work situations for example.

    By Anonymous Anonymous, at 5:16 AM  

  • Bullet,
    Being a happy Aspie is one thing. Being severely autistic and self injurious is something entirely different. Those people are not happy.

    By Blogger John Best, at 9:15 AM  

  • Ok, if you can accept I am happy then you can accept I don't need a cure.
    Now, you seem to be under the mistaken impression that I am saying that if a person is autistic and has severe difficulties to an extent which mean that even with a loving and understanding environment they would still have difficulties and that these difficulties are causing them distress that I am saying "oh just let them get on with it." The answer to this is absolutely not, I don't want anybody to struggle with things they don't want to struggle with. If I felt that I wouldn't have posted advice on a site where a friend is upset because her daughter has extreme sensitivities to materials and I wouldn't have put up requests on freecycle for people to donate the one type of skirt she'll wear, or looked for material to send for that skirt or spoken supportingly to another mum who's lad has been denied services he desperately needs. I said if I lived nearer I'd come and help her myself and I meant it. And for the record she has never blamed her son or spoken disparingly about it, she just wants him to have help.
    But what I don't want to happen is where someone like your child is castigated for doing things, or acting in a way that does make them happy. Eg, suppose your son loved blowing bubbles and he loved doing it when he was 20, for something that harms no-one and makes him happy, I'd like it if he could blow bubbles without people thinking he should stop, or mocking him for it. I know you've spoken of teaching your son to box and I can understand your wish that your son could self defend himself. But that self defence won't help him get a job at something he would be excellent at because the employer is prejudiced against autistic people. That's why I want people's attitudes to change. To give help where help is truly needed, but to understand that although a person's way of doing things, or perceiving things may seem strange and different to many, that it is not strange to the person doing it. I want there to be a world where, if your son continues to need help, that that help will be given willingly without talk of how much he costs and by people who like him and care for him and don't mock or abuse him.

    By Anonymous Anonymous, at 11:03 AM  

  • Bullet,
    I don't think anyone disagrees with what you say. However, none of that stuff would be needed if we could cure the autism. So, that makes curing it the best option.

    By Blogger John Best, at 11:42 AM  

  • Yes, John, it can be very tempting to think that if only we could do away with certain kinds of human differences, there would be no more prejudice.

    But unfortunately, whenever one kind of prejudice goes away, another kind usually crops up.

    By Blogger abfh, at 9:52 AM  

  • Yes, abfh, I heartily agree...fearing differences has more to do with the fear than the differences.

    By Anonymous Anonymous, at 4:25 PM  

Post a Comment

<< Home