What autism is not

25 Sep

As I mentioned in my last post, I am currently reading Steven Pinker‘s latest, The Stuff of Thought, an interesting (so far) exploration of the role language plays in human nature. In preparing to make an argument at one point, he starts off by saying the following:

To truly understand what something is you must understand what it is not. (His emphasis.)

This, of course, got me thinking about what autism is not. (It seems I can’t read a book, or what a movie or TV show without finding some sort of connection to my thoughts about autism!) Here’s a quick list, I”m sure I’ll come up with more:

What autism is not:

  • Devastation
  • Train Wreck
  • End of the world
  • Caused by mercury poisoning
  • Purely environmental
  • Purely genetic
  • Caused by MMR (or any vaccine)
  • A curse
  • Punishment from God (whichever one may be yours)
  • A disease that can be cured
  • Easy to live with
  • Easy to explain to friends and family
  • Easy to explain to siblings of autistic child
  • Easy to explain to the autistic child
  • A reason to kill your child

I know there are more, many more, but this is what comes to mind tonight as I head off to bed. What do you think autism is not? (And please, if you disagree with one I’ve put here let me know.)

23 Responses to “What autism is not”

  1. Tired and want to go to bed September 25, 2007 at 05:46 #

    autism is not

    …a reason to experiment on your child.

    …a reason to reject all authority

    …a reason to blanketly accept some alternative authority

  2. 666sigma September 25, 2007 at 12:05 #

    That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

  3. notmercury September 25, 2007 at 15:13 #

    666stigma: “That’s a pretty good list except you have no proof (one way or the other) regarding vaccines.”

    What sort of proof do you require?

  4. jon Mitchell September 25, 2007 at 15:30 #

    as an autistic person i must disagree that autism is not a curse or a devestation. It has made my life difficult. Are you autistic, brett? If not, how can you know it is not a curse or a devestation

  5. Steve D September 25, 2007 at 16:12 #

    Jon –
    I don’t want to put words into Brett’s mouth, but I think he is saying that autism itself is not experienced in a profoundly negative way (ie. ‘curse’, ‘devasatation’) by all autistic people, and that the media’s careless overuse of these terms leads many people to only focus on its most negative aspects. This is counterproductive to a healthy view of autism by society.

    Notice that Brett’s list also states that
    Autism is not … ‘Easy to live with’. This is an acknowledgment, in my view, of the difficulties an autistic individual experiences as a result of their differences.

  6. Uncle dave September 25, 2007 at 16:27 #

    Whoa! Good point Jon.
    I guess like everything else, it was written from a parental or loved one perspective rather than as a personal perspective on being the one with Autism.

    Why isn’t there more perspective broadcast from the person with autism’s perspective?
    There are lots of very high functioning (forgive me) individuals with autism out there that can more than adequately represent thier perspective as Jon has.
    Clinical and diagnostic discussions are one thing , but I have only seen one nationally televised journalistic piece on autism from the afflicted persons perspective. TV piece was about a white female who looked to be about early 20’s appeared to be living on her own (probably assisted care of some sort), who communicated through text on the computer (could type like there is no tomorrow). Obvioulsy very high functioning, but once again, affected in a manner that greatly influenced her ability to communicate in a typical auditory and expressive manner. She discussed her perspective on communications, stimulas and how she viewed other people and world around her.
    Very interesting…

  7. bullet September 25, 2007 at 16:55 #

    Autism is not:

    An excuse to pathologise every single little difference whilst at the same time denying help when people really need it.
    The entire basis of a person.
    Something that is wholly negative.
    Something that is wholly positive.
    Something that ensures everybody on the spectrum will behave in the same way, or that the way they behave is governed by their perceived functioning levels in various areas.

  8. np September 25, 2007 at 17:18 #

    Most physicians will give you their OPINION and pose it as science.

  9. Joseph September 25, 2007 at 17:50 #

    That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

    Would a phone survey that found autism to be more common among unvaccinated children than vaccinated ones be good enough? How about one that found unvaccinated girls to have a rate of autism 15 times higher than that found in prior phone surveys?

  10. Brett September 25, 2007 at 23:45 #

    Jon,

    You make some valid points, and no, I am not autistic but a parent of an autistic son. Uncle dave is correct that this was written primarily from a parent’s perspective.

    I would be interested to hear from you, and other autistics, what you think autism is not.

  11. jon Mitchell September 25, 2007 at 23:56 #

    okay i will oblige:

    Autism is not a different way of being or alternative life-style, a different culture, autism is not something to take joy in and be celebrated. It is not something that society can magically accommodate and just make it “all right”.

  12. Kev September 26, 2007 at 07:06 #

    Autism is not ‘just’ one thing or another. I think Jon is right and I think Brett’s list is right too.

    Uncle dave – if you head to The Autism Hub you will find several blogs that are run by autistic people.

  13. tracy September 26, 2007 at 15:38 #

    please help i have 3 year old autistic son and all this confuses me on how to help him

  14. Joseph September 26, 2007 at 15:54 #

    Autism is not something that, if it were possible to take it away, would make everything “all right”. Hi Jon 🙂

    tracy: You’ll get a lot of advise from a lot of people, some valid, some that can only be described as total claptrap. From my research, the most important advise I can give you is to never, ever, under any circumstances, place your child in an institution or a group home. This in itself won’t guarantee a good outcome, but it will at least make a good or fair outcome possible if not likely.

  15. bullet September 26, 2007 at 17:07 #

    Hello Tracey :). My son is four, so pretty close to your son. If you like I could say some of the things that we’ve been doing to help him. Would that be alright?

  16. Ettina September 27, 2007 at 17:28 #

    *Life* isn’t ‘all right’. (But what life is not is a whole other matter.)

    > The entire basis of a person.

    I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
    In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
    Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.

  17. Ettina September 27, 2007 at 17:30 #

    My biggest advice for Tracey is – listen to your child. Even if he can’t talk, his behavior tells you things. Advice from others is only helpful inasmuch as it helps you better understand your child.

  18. bullet September 27, 2007 at 18:28 #

    I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
    “In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
    Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.”

    I agree

  19. katia September 27, 2007 at 23:32 #

    WHAT RIGHT DOES JENNY MCCARTHY HAVE TO GO AROUND AND SAY SHE HAS CURED HER SONS AUTISM
    SHES SAYS IT HAS TO DO WITH DIET AND VACCINATIONS SHE’S NO DOCTOR …….

  20. 666sigma September 28, 2007 at 09:41 #

    Joseph,

    The GR study had obvious bias, but to draw your conclusion, you have to mix apples with oranges. Within their study, it showed autism was higher among the vaccinated.

    It would be interesting to see a real study comparing the rates of autism (and other LD’s) among the vaccinated and the unvaccinated. GR study is flawed, but probably no more so than most of the so called “scientific” studies.

    The CDC will avoid doing a study like this at all costs so I won’t be holding my breath waiting for one.

  21. Kev September 28, 2007 at 10:51 #

    _”Within their study, it showed autism was higher among the vaccinated.”_

    What study was this?

  22. Kev September 28, 2007 at 11:01 #

    Oh wait Siggy – did you mean the GR phone poll? You – the self professed statistician – consider that a study do you?

    The one that showed amongst older kids (as GR specified)

    Ages 11-17, all kids:
    Aspergers (unvaccinated): 1%
    Aspergers (full vaccinated): 2%

    Thats a difference of 1%.

    PDD-NOS (unvaccinated): 1%
    PDD-NOS (full vaccinated): 1%

    autism (unvaccinated): 2%
    autism (full vaccinated): 2%

    ASD (unvaccinated): 3%
    ASD (full vaccinated): 3%

    Could you maybe lend your statistical expertise to explaining the statistical difference between 1% and 1%? Many thanks genius.

  23. Joseph September 28, 2007 at 12:20 #

    Within their study, it showed autism was higher among the vaccinated.

    Sigma, you obviously are unfamiliar with the results of the GR survey.

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