Monday, February 7, 2011

Autism Reality

Reality is the state of things as they actually exist, rather than as they may appear or may be thought to be.  Reality is value-neutral, it does not cast judgment on the rightness or wrongness of something.  So when we talk about "reality", we are talking about what things are rather than what we would want them to be.

I believe that it is very important to deal with the reality of a situation rather than some abstract notion of what could or should be.  It is crucial to fully grasp the idea of what something is before you move onto the why it is like it is or what it should be like.

You may not like what reality is and you are always free to try and change it.  But to do that  you have to understand what exactly it is you are dealing with and what steps are required to change it.  The worst possible thing you can do when trying to change reality is to just pretend it is something other than it is.  When you do that you not only deny reality but also lose your ability to change it.

I like to call pretending that reality is something other than it is denialism.  Denialism is a problem in the autism world.  There are many "autism advocates" who, for whatever reason, seem to feel the need to pretend that autism is something other than it is or pretend that life with autism is something other than it is.

Consider this recent post by a semi-retired neurodiversity blogger.  He is clearly very proud of his son and I don't blame him.  Every parent has the right (and the duty) to take pride in their children's accomplishments.  If that were my child I would be proud too.

But the problem is this gentleman has basically indoctrinated his son with a false reality about autism.  He denies doing so, of course, but no nine year old (with or without autism) has the mental capacity to grasp what exactly autism is or deal with the realities of the difficulties that autism can bring.  Hell, for that matter, most adults don't have the mental capacity to really understand autism either.  My experience has taught me that  is very difficult for anyone to understand the reality of autism unless you live it or it impacts your daily life.  That goes double for the more severe forms of autism (and other major disabilities).

So while this gentleman is quite proud of his son, my older daughters just turned six years old and still don't have the communication skills to express basic concepts.  His "autism" reality is that his nine year old son questions the medical model of autism while mine is that my six year olds can barely express their basic needs.

As an example, just this past week Twin B developed a double ear infection.  Those of you who have had ear infections before know that they can be uncomfortable at best to downright painful at worst.  Yet, because of her autism, Twin B lacks the communication skills to express that her ears hurt.  She suffered in silence, unable to tell us that she was in pain.  The only reason that we knew about the infections is that she happened to have a doctors appointment and they checked her ears.

But, if this blogger is to be believed, the reality of "autism" is that autism is just a difference that needs acceptance.  It is somehow more important to "take down" discrimination and let children like mine know they are loved and accepted for who they are than it is to take down a disorder that causes great hardship for my children.  These words ring hollow in the face of my daughter being in pain and prevented from seeking help for her pain.

And this is just a trivial example.

The reality of autism for my children - and I suspect the majority of children with autism - is that it is not a quest for acceptance.  It is a struggle to acquire enough skills to be able to survive in the world.  Don't get me wrong, I want my children to know they are loved and accepted but I get the distinct impression that they would also love to be able to talk.

This rejection of a fundamental autism reality is the core problem with the neurodiversity movement and why I think of it as a sort of autism apartheid.  This movement effectively segregates the autism world into the very high functioning minority and rest - and then tries to focus the entire conversation on the minority while ignoring the needs of the majority.  Sure, you will hear the occasional lip service to the less fortunate ones but most of the conversation will be needs and wants of the "there's nothing wrong with autism" minority.

The majority of children with autism need real help just as much or more than they need acceptance.  They need the debilitating symptoms of their autism to be eradicated.

Another recent example of denialism comes from this recent exchange of posts between Harold Doherty and Astrid.  Harold is basically saying that the reality of severe autism is that people with severe autism are more vulnerable to abuse.  He is saying this to raise awareness of the problem so that it can be prevented.

To me, these statements are a complete no-brainer.  Autism can and does make people easier targets for abuse, especially if the victims are unable to communicate that the abuse occurred.

Yet Astrid feels the need to defend the virtue of autism and misrepresents Harold's point to mean the disability causes the abuse.  She takes exception with the idea that the disability has anything to do with the abuse.  She calls it "abuse apologism".

I call her response denialism.

I am not suggesting that a disability "causes" or invites abuse.  Abuse of any form for any reason is completely inexcusable and should not be tolerated.  But to deny the reality that severe disabilities, such as some forms of autism, play a role in abuse is absurd and downright dangerous to the disabled.

The reality is that a disability makes a person more vulnerable to abuse.  You either accept that reality and take steps to prevent it or you stick your head in the sand and pretend that the disability has nothing to do with it and thus ignore the danger.

I know that when it comes to my children I would rather face what can be the grim reality of autism and try it change it rather than pretending it is something that it isn't.  My children need more than just acceptance and love - they need someone to take down their autism.  And, as I have talked about before, they certainly need to be protected from a world that they do not understand and from people who will take advantage of them.


  1. I never said that autistics ar enot more vulnerable to abuse than NTs. What I took offense at was not the "reality" part but the "autism" part, which I interpreted to mean the autism somehow is to blame for the abuse. Harold apparently didn't mean that.

    As for that other neurodiversity blogger, well there are different levels of autism. I would not have been able to question the medical model at age nine, but it is possible that this is one of the boy's interests. As for "indoctrinating", of course this father has "indoctrinated" his son, just as you have "indoctrinated" your daughters, insofar as they can understand you, with the idea that autism is utterly bad. That is not intentional, but it is the way parents unconsciously communicate their beliefs to their children. My parents "indoctrinated" me to believe that I wasn't really disabled. This influenced me in a glot of ways, even though I'm learning not to listen to this anymore.

    Lastly, inability to communicate is an autism reality for some, and I never denied that. If other people abuse a non-communicative autistic, that, however, is not an autism reality, but an abuse reality.

  2. Lastly, inability to communicate is an autism reality for some, and I never denied that. If other people abuse a non-communicative autistic, that, however, is not an autism reality, but an abuse reality.

    Since most people with autism have communication challenges, it is indeed an autism reality as well.

    I do not believe Astrid will ever understand without having her own children with severe autism and intellectual disability. Perhaps then, after telling her child they are just different and seeing them almost get run over by a car, or scream for hours on end because they could not communicate an earache - perhaps then, she will understand how vulnerable her child really is. And this vulnerability is a direct result of his or her disability.

    Autism is a disability. That is reality. It means other people can do things you cannot do but ought to be able to do - that is the definition of disability.

  3. AJ.

    Shiny Happy Asperger's Syndrome killed my brother in his 30's and is almost certainly going to kill me through self-neglect or suicide.

    The internet debate around autism has been dominated by super-high functioning autistics that don't seem to have any trouble going to university and getting jobs/book deals and their Neurotypical supporters -- and people like yourselves who seem to think the Autism Hub type bloggers are representative of high functioning autism in the wild.

    They are not.

    Meanwhile people like myself who are seriously and life-threateningly disabled by autism who don't tow the neurodiversity party line are dismissed as mentally ill, personality disordered or trolls by the cadre of Happy Shiny's or just shat on by parents like yourselves.

    I don't think AutismWisdom will ever understand without being blind from birth and a full-time hospital patient, or indeed witnessing the death of a loved one from no-big-deal-high-functioning-autism, or indeed the daily struggle to survive of most people with Asperger's Syndrome.

    I hate you all with an intensity you will never be able to understand as you shit on me to prove just how woeful your lives are.

    Only people like me ans Astrid know the reality of HFA, but our voices are drowned out wankers with PhD's and parents at a life long pity party.

    The ignorance you display is as insulting as Amanda Bagg's pantomime low functioning autistic routine.

  4. Socrates,

    I won't ever understand what your life is like, you are 100% right. But we are agreeing that autism and Asperger's are disabilities and not "differences", and that was the point.

  5. I'm glad we have some common ground.

    But we may be alone. Check out this quote from one of the Trustees of the UK's National Autistic Society -- originally left on Astrid's blog.

    We need to fight the tsunami of stupid.

  6. Hi MJ -

    Right on. We had exactly the same thing; except we didn't goto the doctor until my son's eardrum burst. All we knew was that he was inconsolable one evening (thought it was GI).

    My description in this discussion has been a hierarchy. If you cannot explain to a doctor what hurts, or understand how to read a bus route, that the voice on a phone is actually a person, or that the number eight is greater than the number four, then the cocept of 'greater acceptance' is without utility.

    @Socrates - You can have very real problems and still be a troll.

    - pD

  7. MJ, talk of misrepresentation. I never said that autism is not a disability. I disagree strongly to that line of neurodiversity. I am myself significantly impaired by autism. All I did was make a distinction between the impairment, ie. the inability to communicate, and the resulting discrimination or abuse. By the way, I have almost been run over by cars on many occasions, and have screamed for hours on end, although I never said I was as severely disabled as your daughters. Don't make assumptions about me, please.

  8. Astrid,

    "Harold apparently didn't mean that."

    If you changed your mind about your comments then perhaps you could update your post as say as much? An "oops, my bad" goes a long way.

    "I would not have been able to question the medical model at age nine, but it is possible that this is one of the boy's interests."

    Even if that is the case, I would highly doubt that he would not have the ability to fully comprehend the issues involved. The "special interests" (aka obsessions or restricted interests) of autism don't grant you any special ability to grasp concepts that are at least a decade too old for you. Nor do they grant you the ability to understand the implications of more severe forms of autism.

    "just as you have "indoctrinated" your daughters, insofar as they can understand you, with the idea that autism is utterly bad."

    Sorry, but I have to disagree with you. I can't say for certain, but I would highly doubt that my girls have the mental framework to even understand that they are different from other children. While they seem to be very smart little girls (especially my youngest), none of them have the communication skills or social awareness to understand that abstract of a concept. If they do grasp the concept they have never shown any outward signs of it.

    Besides, I don't bash "autism" or call it "bad" when talking to them.

    "Lastly, inability to communicate is an autism reality for some"

    Problems with functional or social communication is a reality for every person who has autism, by definition. If a person doesn't have any communications issues then they don't have autism.

    "If other people abuse a non-communicative autistic, that, however, is not an autism reality, but an abuse reality. "

    But again, autism is to blame for making them more vulnerable and that vulnerability increases the chance that they will be abused. Hence autism does make it more likely that they will be a victim of abuse. Just like a child having autism makes ordinary things like parking lots and swimming pools more dangerous.

    That doesn't mean that the abuse is in any way, shape, or form excusable. But you either accept the reality of autism and deal with it, or you ignore the increased risk and put your child in harms way.

    "I never said that autism is not a disability"

    I don't think I said that.

  9. Socrates,


    I am not saying that your reality of autism doesn't exist, quite the contrary. My beef is with the ND movement's attempts to whitewash the spectrum and deny it is a disability. Clearly there are "high-functioning" people with autism who don't buy the crap that ND is selling and have their own distinct problems.

    But here is the thing - I am not qualified to speak to these problems. That is up to people like you, Astrid, and others like you to do. All I can do is speak to my own experiences.

    So in a way you are right, neither AutismWisdom nor I can understand what it is like to be blind or loose a sibling to autism or to actually have autism ourselves. But then again, I doubt you can understand what it is like to have children who have disabilities or what it is like to know that if you let down your guard for one minute that their lives could be at stake or to worry who is going to take care of your children once you are no longer able.

    In spite of all of that, I don't think my family's life is "woeful" or a big pity party. Sure, the daily reality of autism can really suck and we do have a lot of issues to deal with. But for the most part our lives are pretty good.

    I attribute a large part of that success to trying to stick to the reality of what autism means for us. We know what we can do and what we can't and we try not to spend time wishing for something that isn't.

    Or in short, we try to acknowledge the reality of our situation.

    Now, if that means you hate me, then so be it.

    P.S. At least Amanda Bagg's pantomime is much funnier than my "poor parent" act.

  10. "Only people like me ans Astrid know the reality of HFA, but our voices are drowned out wankers with PhD's and parents at a life long pity party."

    What was that about a pity party?

  11. Well, if we don't get an invite to your shower, then we'll have our own.

  12. Hmmm...I'm tempted to give you the benefit of the doubt and compliment you on your sense of humor. However, I could be misinterpreting your comment when it is, in fact, a Tu Quoque. Perhaps you should clarify

  13. Umm... Please don't come all Orac on me. You'll start quoting Dawkins next ;(.

    I am saying I am entitled to an invitation to AJ & personalityDISORDERED's bash. And AJ's contention that a lot of ND HFA's are a bunch of tossers and therefore all ND HFA's are tossers deserves a trip to the Dictionary of 6th Form Rhetoric for pseudo intellectual phrases like Straw Man and Erroneous Induction(Inference?/Deduction?). (I knew 20 years ago which, and briefly cared, but not now).

    Generally Sensible People can on occasion say some really stupid things.

    I'm too drunk to continue. I'm drunk because I am very autistic and don't like the idea of neuroleptics to control the otherwise crippling anxiety.

    If you've seen any of my blogging over the last few years you will instantly recognise an extended suicide note telling a tale that inevitably lead to my premature death from Asperger's Syndrome.

    Of course ND could never accept that such a thing could happen 'cause in the words of Larry Arnold "Autism is no more a disability than having no arms or legs" -- therefore I must've killed myself because of mental illness, or more probably the "he's not really autistic" routine that's so often applied to those that don't fit the fantastical ND picture of autism.

  14. "And AJ's contention that a lot of ND HFA's are a bunch of tossers and therefore all ND HFA's are tossers ..."

    I said that? Huh, I didn't know that I did.

    What I though I said was the assertion that autism = just a difference was a distortion of reality, not that every HFA who calls themselves ND is a tosser.

  15. sorry MJ, precision goes out the window as the vodka goes down. No intentional slight on yourself.

  16. Now that I've got to the end of reading all those comments...

    I just wanted to simply say, excellent post. You've done a great job of expressing the way I too often feel when faced with people who have children from the milder end of the spectrum, trying to tell me how I should feel about my son. About the reality I and him have to live everyday, which they clearly don't comprehend (lucky them!). Thank you for saying what needed to be said.

  17. AJ, I get your drift here. I am a mother of a very bright son with PDD, and by bright I mean possibly gifted, (but at age 5 it's too early to tell). I do not in anyway think my son's brillance and his autism are connected. The brillance might have made him more susceptable to the autism. The brillance is his, the medical issues he has to deal with is autism. He regressed into moderate autism but showed signs of quirky intelligence before any regression into autism. Due to diet addressing some of his medical issues, three weeks into his diet became verbal again, got back his motor skills and noticed other children, and all of this showed up in one day. Food allergy testing revealed why we got the response we did. And that's just it, when you find out what is physically wrong and can fix it, for many of these children you get some significant improvement. This should tell us that SOMETHING is physically wrong with these kids and that autism should be rigorously studied as a medical condition that has root medical causes, that may allow some children a chance to no longer be autistic or get dramatically better. This embrace the autism thing and the medical community in general is in no hurry to get these kids the medical help they need. When the big study came out last year (the one headed by Timothy Buie) the big message from the study is that these children have rights to get their medical issues treated just like anybody else. But it seemed to fall on deaf ears. The media announced nation wide that the study said no link between diet and autism. So many times I have had to be on the defense trying to get my childs medical issues taken care of. No one was ever in any hurry to get to the bottom of it, even after the diet response we got. It's almost like saying we need to embrace strep throat and be in no hurry to treat someone disabled from it.