A difference and a disability

2 May

I can’t recall the amount of times over the last 10 years or so that people have accused me, or other writers on this blog of saying that autism is ‘merely’ a difference. Its a lot of times however, and every time they say it, its still wrong. Both in fact and idea. I’ve never said autism is merely a difference or just a difference. I think it is also a disability.

However, even that is not the truth in my opinion. The truth is that autism is a spectrum. I think however, that a lot of people perceive a spectrum as a ‘straight-line’ type idea with a definite start and a definite end. Thats not how I see it. I see it more as something like light refracted through a prism creating a rainbow of colours. With these colours one can make a near infinite range of hues and shades.

And that is also how I see the autistic spectrum. It doesn’t begin with severe autism and end with very high functioning autism or vice versa. It is comprised of individuals that each are their own hue and shade, made up of differing components of the spectrum. Something that doesn’t have a beginning or an end but an ever shifting array of possibilities.

So an autistic person may have very severe autism but not have an intellectual disability. A different autistic person may function very well socially but not very well with eye contact. Yet another individual may have epilepsy and Aspergers. I don’t see how, in such a scenario one can say autism is ‘just’ or ‘merely’ anything. For a lot of autistic people, their autism is a disabling condition and also a difference they may cherish. For others, they may hate the way their autism affects them.

What I advocate for is the preservation of an autistic individuals personal right to be who they are. If they want to advocate for their autism and fellow autistic peers, who are we non-autistics to judge? It doesn’t matter to me if that person is someone who loves or hates their autism. As an autistic individual they have every right to speak for themselves and for others who are like-minded.

My own belief is that with self-confidence and the support of family, friends and professionals, an autistic person can have a world of options open to them. Those options _may_ be limited by the spectrum of difference autism has abled/disabled them with and they may also be limited by the society in which they live but I believe there is always options, always choice and always hope.

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37 Responses to “A difference and a disability”

  1. Barbara May 2, 2011 at 17:45 #

    Great post, Kev!

  2. Rose May 2, 2011 at 18:58 #

    there is always options, always choice and always hope…yes!

  3. sharon May 2, 2011 at 23:40 #

    Yes. This false dichotomy seems symptomatic of a certain intellectual laziness. I can’t fathom how else people allow themselves to see something so complext and broad as Autism in such narrow terms. It turns my stomach when people living with Autism have their stories and perspectives dismissed because it does not fit within a curebie narrative. And conversely confounds me when others argue that any intervention designed to alleviate the difficulties of Autism is not acceptance of the individual.
    There really is a lack of depth to these lines of thinking.

  4. Jorge Campo May 3, 2011 at 11:53 #

    To me “autism” is just a label like ADHD or any other “mental pathology”.

    As a label it does not have any explanatory properties.

  5. passionlessDrone May 4, 2011 at 03:43 #

    Hello friends –

    This is a tricky discussion; generally I wind up pissing someone off, which I am trying to avoid as possible, lately. None the less, I am going to give a shot towards explaining my reasoning.

    I want to cure my son. Recover, put autism into remission, cure, whatever. What does that mean to me, for me?

    For him, in this one particular instance, some of his biggest challenges come from three areas:

    1) An near complete inability to communicate wants/needs/thoughts externally, alongside a very impaired ability to understand communication. For example, I’ve never given my son a throat lozenge for sore throat, or advil for a headache; not because I am anti medicine, but rather, because I’ve never known if he’s had a headache, or sore throat.

    The ability to understand an abstract concept, such as ‘pain’ or ‘show me where it hurts’, or ‘does your head hurt?’, are foreign to him. It requires a level of thought that he, apparently, has yet to master. This is a real hardship on him; the inability to communicate brings him no benefit, the difference is the disability.

    If I work to alleviate this, am I not attempting to overcome one of the core features of autism, impaired communication? I think, Kev, that at times when you have been accused of saying that autism is ‘merely a difference’, it is likely from parents with similar viewpoints as mine, people who find that the difference is the disability itself. Without the disability, there might be no difference, and for a lot of parents, that possibility is a lot less odious than the other choice.

    2) Periodically severe OCD tendencies; for example, the need to touch the tail light of every SUV in a parking lot, or lately, the desire to throw rocks into bodies of water; all excursions outside the home essentially turn into rock collecting experiments.

    The problem here isn’t that my son receives contentment from doing ‘odd’ things, but rather, that left to his own devices, would perform these actions to the exclusion of all other activities. OCD can be quite debilitating, and it provides no benifits; there is no skill to be refined, no lessons to be learned from throwing rocks in a pool for hours and hours on end.

    There is nothing wrong with wanting someone you love not to have OCD, and indeed, wanting it to be cured.

    3) Sensitivities to touch, and sound that again, are periodically very, very problematic. The sound of a dog barking, a baby crying, a touch to the shoulder, or a hand dryer blowing cause my son pain. It is possible this comes alongside other capacities, I really have no idea; but in the everyday, in the real world, it causes him to have very real problems handling stimuli that comprise the modern experience.

    Everyone has a unique viewpoint of the world; everyone relishes and relies on their perception of reality, there is nothing special about having autism in this regard. What is ‘different’ about autism is that in a great many cases, these processes qualitatively impair a persons abilities to effectively navigate our universe. I think that in large part, when people find anger in the notion of ‘a difference and a disability’, it is because they cannot make a distinction between the two when they witness the problems their child faces; the difference is the disability, and being told to accept one, is to be told that the challenges their children face should not be eliminated.

    Those are my thoughts anyway.

    – pD

  6. sharon May 4, 2011 at 04:56 #

    Well put pD, what I hear you say is that you love your son and want to find ways to ease his suffering. I can’t imagine any parent not understanding that.

  7. Anne May 4, 2011 at 08:47 #

    pD,

    I agree with Sharon that you wish the best for your son and your feelings are understandable.

    However, your statement that parents are being “told that the challenges their children face should not be eliminated” is a straw man. Nobody is saying that we should not help reduce the challenges of communication and everyday life, just that trying to “cure autism” is the wrong way to do it.

    It is very possible to help someone overcome the challenges associated with autism without insisting on a cure. For example, if your son could use non-speech communication (PECS, iPad, etc.) this would solve the problem of not being able to communicate needs–but it would not “cure” his autism. Nobody in the neurodiversity movement would say your son shouldn’t have access to communication.

    What we DO say is that parents need to accept that their child needs assistance with communication, overcoming sensory challenges, and training for independence INSTEAD OF being subjected to “cures.” Research money should go to improving this assistance instead of “cures” or causation. If all the money spent on disproving the Wakefield hypothesis had instead gone to finding better ways to communicate in particularly difficult cases, your situation might be much less frustrating.

    I hope this is clearer.

    –Anne

  8. passionlessDrone May 4, 2011 at 16:52 #

    Hi Anne –

    However, your statement that parents are being “told that the challenges their children face should not be eliminated” is a straw man. Nobody is saying that we should not help reduce the challenges of communication and everyday life, just that trying to “cure autism” is the wrong way to do it.

    Why is it the ‘wrong’ way to do it, though?

    If my son were hallucinating, would you have a problem with me trying to keep that from happening in the first place, as opposed to trying to help him adequately navigate through a lifetime of hallucinations? Should it matter to me if he appeared to like hallucinating, or indeed, or other people who also told me they hallucinate that it shouldn’t be ‘cured’?

    It is very possible to help someone overcome the challenges associated with autism without insisting on a cure. For example, if your son could use non-speech communication (PECS, iPad, etc.) this would solve the problem of not being able to communicate needs—but it would not “cure” his autism.

    But you are making big, huge guesses as to my son’s capacities; and in a lot of cases what you describe is not possible. There is a wealth of abstract concepts necessary before something like PECS can be considered; if a child does not have those, PECS cards are little more than laminate squares littering the floor.

    If someone does not understand the concept of ‘yes’ and ‘no’, what good are PECS? If someone does not understand that concepts of ‘hurt’, or ‘pain’ can be meaningfully conveyed what good does a picture of someone with a sore throat do? Doesn’t someone have to understand that a picture can be used to represent how they feel, a level of communicative meaning, before PECS can be utilized? The difference and disability is what keeps him from understanding the utility of something like a PECS system.

    I’m curious, what PECS or Ipad based solution would you recommend for the type of OCD type behaviors my son exhibits? This is a genuine question.

    Nobody in the neurodiversity movement would say your son shouldn’t have access to communication.

    Well and good to say, but if in practice, such access is meaningless, because he cannot understand it’s usefulness as a result of his autism, you might as well say we should all be able to walk on the moon.

    What we DO say is that parents need to accept that their child needs assistance with communication, overcoming sensory challenges, and training for independence INSTEAD OF being subjected to “cures.”

    The world isn’t going to get any less bright, less loud, less crowded, or less dependent on the need to communicate in our children’s lifetimes no matter how much we may wish it; and no matter how wrong it is, funding for a generation of children needing lifetime assistance will not be forthcoming. This doesn’t have anything to do with the relative pittiance spent thus far studying vaccines; talk about strawmen!

    I’ve remembered why I started straying from these conversations.

    Good luck, Anne.

    – pD

    • Sullivan May 4, 2011 at 19:03 #

      I’ve remembered why I started straying from these conversations.

      They are difficult conversations, to say the least. People on all sides end up pissed off. But they are important discussions, I think. If only to redefine what people are talking about.

      Sometimes people say things like “this group or that group is against a cure. That means they don’t believe in any treatments”, which isn’t really true. Or, on the other side, “this group is all about cure and they will do anything to get there”, which isn’t true either.

      Banishing the straw men is a good part of the discussion, in my view.

      I think I’ve said it before, but I’ll repeat myself: I think a lot of “cure” discussion is wasted effort. There is no cure. There is no cure being tested. While the question of whether to cure or not is important, it is largely academic.

      If I can presume to work with this statement, let me make some observations:

      Well and good to say, but if in practice, such access is meaningless, because he cannot understand it’s usefulness as a result of his autism, you might as well say we should all be able to walk on the moon.

      At some point, is this basically saying that there are two basic models for how to approach improving the lives of autistics? Let me call one “top down” and the other “bottom up”.

      Top down: let’s start making the improvements we can for the autistic individual. Let’s help the autistic learn to communicate, learn to care for him/herself, and keep adding to what skills the autistic has.

      Bottom up: let’s attack the root cause of the disability. Let’s find that and treat that. Having done so, improvements in skills should follow.

      First, it this isn’t an either/or proposition.

      Second, autism isn’t in and of itself a root cause, in my view. It is a manifestation of some underlying difference. Consider Fragile-X or Landau-Kleffner syndrome. Both can manifest as autism (or autism-like). LKS is treated by controlling seizures. Fragile-X has treatments in the works. I don’t see a lot of chatter complaining about these efforts.

      If an autistic says, “I’m good with who I am”, we should respect that. I would say further that autism is enough of a disability that we don’t need to go to dehumanizing language (which you haven’t) to portray it in advocacy. Autistics often have multiple disabilities. Describing the real challenges should be enough for effective advocacy. I think you’ve shown that quite effectively above. If the cure rhetoric wasn’t so often mixed with the dehumanizing rhetoric, the discussion would drop about 10 decibels.

      • Sullivan May 4, 2011 at 19:25 #

        “While the question of whether to cure or not is important, it is largely academic.”

        To be clear–it is academic at this time and for the near future.

        Analogies are bad, and here is a bad analogy: it’s like saying “what do we do when Korea unifies?” We should discuss this ahead of time, but (a) Korea isn’t unified and (b) there is no indication that this will happen anytime in the near future.

  9. rose May 4, 2011 at 21:18 #

    I hear you, pD. The closer my son came to self-sufficiency, the farther away from cure I moved. Once I realized he’d be okay, I saw the “beauty” of the ND movement. I used to think Temple Grandin was “pie in the sky”, wishful thinking. Turns out she’s not. At least I hope.

    But when I was there, where I was afraid my son might digress, I was scared sh*tless. I didn’t know, but my family did. Seems they’d seen kids like Ben before. They knew he’d be okay.

    I’ve worked in public schools, and children like your child are very rare. Parents will move to cities/towns where their children can get decent services. The sacrifice is enormous. And always in the back of their minds is the thought that there is something that science doesn’t see, a chemical, a medicine, a diet change…Sullivan is right, there is no cure. It’s because “science” nor society didn’t start looking until it became remunerative.It’s no wonder parents went out looking on their own…nobody else would listen to them. They see their chidren as whole, but needing something, anything that will make their lives easier. Society saw their kids as throw-aways. And now able bodied able minded people are saying “just accept them exactly as they are!!!”

    It’s like a slap in the face.

    Am I close?

  10. sharon May 4, 2011 at 22:59 #

    I really appreciate you taking the time to share your perspective pD. As Sullivan states, these are important conversations, although I can understand it must at times feel frustrating. I just wanted to pick up on the “cure” thread of the discussion.
    If there was a cure I am sure all of us with children not as severely affected as yours would stand aside to allow your son first access to it. But given there is currently no cure, and those chasing the notion of recovery are essentially living a pipe dream, what does that leave us with? From my perspective, a whole lot of (proven) intervention, hope and loads of love. And I think that’s where we all find our common ground. When I read your and Annes comments, I dont see two oppositional narratives. I see essentially the same end game, just framed up differently. Yes a cure for people suffering like your son would be good, but since there isn’t one what do we do to make life for them as fulfilling as possible?

    Also above you state “should it matter to me that he appeared to like hallucinating?” I think the answer to this is yes. It should matter. But we’ll leave that for another day 🙂
    I ask you to keep engaged with these conversations as you bring an important dimension to them. Thankyou.

  11. Anne May 5, 2011 at 03:43 #

    pD,

    I apologize for mixing discussion of your son into an example that should’ve been hypothetical. I am sad to hear that he is that far from communication, and I should not have stuck my neck out when I am not an expert on dealing with children with severe challenges. There are people who know more about it than I do–from a speech therapy POV, not a magical cure POV–and I assumed too much about their capabilities. I apologize for all this.

    Anne

  12. Anne May 5, 2011 at 04:09 #

    As Sullivan mentioned, autism is not a root cause. From what I know of brain development, autism is the result of many separate changes at a cellular and biochemcial level in the brain. The brain is built differently from the ground up–before birth. Neurons grow and either have too many or too few connections compared to non-autistic development. The connections keep developing differently, but since learning is a process of neuron growth, connection, and reconnection, it’s possible to influence new connections, particularly early in childhood. But there are no treatments that would somehow rebuild the brain in a non-autistic structure. That is, there is no “cure.”

    Because this development process happens differently in all autistics, some are affected more than others in different ways. That’s why it’s a spectrum (or maybe a multidimensional color space) and different teaching interventions are more or less effective.

    –Anne

  13. Arthur Golden May 8, 2011 at 20:42 #

    Rose writes 4 days ago:

    “I hear you, pD….I’ve worked in public schools, and children like your child are very rare.”

    In public schools children like pD’s son may be “very rare” but there are many thousands of such children in numerous private special education schools, so such children are not very rare at all!

    I did not notice how old pD’s son is and I will note that at age 7, my son Ben had very little communication skills and still at age 10 his OCD behaviors included running up close to spinning wheels, especially the tires of fast moving cars in the middle of the street. However, with much effort his communication skills did improve over the years although at age 39 he is still completely nonverbal but has adequate self-initiated completely independent Gestures to express all his daily needs. Almost miraculously, his worse OCD behaviors disappeared before any tragedy.

    Arthur Golden

  14. rose May 8, 2011 at 22:23 #

    Arthur:

    I did, in fact, work for 7 months in a residential home for MD and Autistic kids. They were the ones the public schools wouldn’t/couldn’t take and the kids received full time ABA with ‘some’ academics.

    It was at a cost of $80,000 a year, so we are talking INTENSE. They lived at the residence, for the most part, and went home on limited holidays when the residence was closed. All workers were intensively trained for about 2 weeks before they were even allowed to work a day with the kids.

    The “autism” of the web, the “Wrong Planet” types, don’t begin to compare to true autism. They are only shadow syndromes.

    The thing is, brilliance and true autism are hard to distinguish. They have the same developmental trajectory, and a LOT of similarities. Now, I’m not saying my son is smart, school-wise–he was considered LD. BUT…dang if he isn’t a natutal at machines. Kinda like John Elder Robison, but not THAT briliant.

    It pisses me off the fear that was going around back then…”He’s autistic, oh my GOD IN HEAVEN”. Now, with him at age 17 I’m thinking, “How the hell could I have been so fooled.”

    I talk too much.

    I know none of you with kids with real autism love them any less because of it. You do hate to see them suffer with the intensity of emotion that drives them into fits, the behavioral counterpart of a type of epilepsy almost, because it is beyond their control. And you hate to see self-harm. You would be pretty cold not to want to see them suffer.

    Ben used to be a runner when he was 3 YEARS OLD, Arthur. Not at age 10. I would have been worn out for fear of his death. A few of the kids at Pine Grove were runners, too. At least at times.

    • Sullivan May 8, 2011 at 23:41 #

      “The “autism” of the web, the “Wrong Planet” types, don’t begin to compare to true autism. They are only shadow syndromes.”

      I’m not big in saying any segment of the community is “true” autism.

  15. rose May 8, 2011 at 22:25 #

    I mean you’d be pretty cold TO want to see them suffer. I was thinking there was a double negative in there somewhere…

  16. sharon May 9, 2011 at 00:44 #

    @rose, I would be interested to hear a definition that outlines in your view where true autism ends and begins. Given we are talking about a spectrum of disabilities, and abilities, it would seem a very slippery definition to pin down. And inherently problematic.

  17. Anne May 9, 2011 at 01:37 #

    @Sullivan & Sharon,

    I agree with you that drawing lines between parts of the community is a bad idea.

    To use a crude analogy, Type I diabetics and Type II diabetics both have diabetes and have to control their blood sugar. Type I diabetics, who depend on insulin, could argue that Type II diabetics aren’t “truly diabetic” because if they’re lucky, they can control their blood sugar through diet and exercise. But that would ignore all the similarities, such as needing to monitor blood sugar and watch for complications.

    However, autism is more complex. Autistics are different in at least three general domains (communication, sensory, social) and often have other diagnoses such as intellectual disabilities or seizure disorders. We don’t know how to tell which autistic children will overcome their developmental delay in which aspects of autism and who will remain significantly impaired over their lifespan. We do know that even adult autistics who have developed well enough to function reasonably well have documentable residual differences from non-autistics and will still struggle with life to some extent.

    Just as someone with Type II diabetes who controls blood sugar through diet and exercise is still diabetic, someone who has either overcome/outgrown severe problems as a child with autism, or someone whose challenges were less serious, is still autistic.

    What we need is a way to evaluate autism symptoms and provide appropriate interventions, without getting into fights about whose autism is most severe or real or shadow. We don’t need to splinter the community. Parents have an interest in supporting adult autistic causes because their children will be adults someday. Some will develop enough to need minimal supports or just freedom from discrimination, others will need intensive independent living supports and/or 24/7 caregivers. Adult autistics can help parents by providing examples of potential futures for autistic children.

    Parents and adult autistics could both benefit from a large-scale retrospective study of outcomes in autism, examining changes over time throughout the lifespan and what was most beneficial (or adverse).

  18. sharon May 9, 2011 at 05:19 #

    @Anne, yes I agree it’s not helpful to get into fights about “whose autism is most severe or real or shadow’. But as I am currently at the beginning of my sons Autism journey I am perplexed and somewhat offended by the suggestion that as he is verbal and sociable (well kind of) and has no learning disability that we can tell at this stage that somehow this means the challenges he faces are not considerable. Yes he can speak, but he still wouldnt be able to tell me if he felt unwell for example. His learning ability means attending mainstream school when he is old enough, where he will struggle in many ways, especially socially. The risks he faces in terms of bullying, isolation, sensory over load etc are terrifying for me, and no doubt will be difficult for him. He will be acutely aware of his differences. This means his father and I will be working double time to ensure he doesnt internalise messages that suggest his difference means he is less than, or broken in some way. There’s also the terror of sending a child who wanders to an open school environment that doesnt fully comprehend the risks. I could go on and on about the challenges of raising a child who is not severely impacted by Autism, yet still meets the criteria in the DSM, therefore to my mind is truly affected by Autism.
    I really feel for parents with children who are severely affected by an ASD, and am profoundly moved by their stories. But this dismissive narrative of ‘real Autism’ vs some Claytons Autism, which I am assuming some would say my child has, feels particularly invalidating.

  19. Anne May 9, 2011 at 09:52 #

    Sharon,

    I am sorry if my euphemism of “significantly impaired” implied that I don’t think children in the middle of the autism spectrum have any challenges from their communication, social, or sensory issues. I was trying to avoid using derogatory language, such as “low-functioning,” not dismiss legitimate concerns of people with less impairment. I agree with your concerns wholeheartedly and am sorry I led you to think otherwise.

    In fact, the point I apparently failed to make is that *all* autistics will have some issues, and that the type and severity will vary individually. I only explicitly mentioned the opposite endpoints, because I was thinking of an earlier post dismissing those who are not “real autistics” and pointed to the kind of people who post at Wrong Planet. I did not mean to gloss over the difficulties of those in the murky middle of the autistic spectrum. I meant to say that all autistics will have difficulties.

    Here’s another crude analogy: Commuting from Los Angeles to San Francisco by train every day (500 miles) would be amazingly difficult. Commuting from Monterey to San Francisco would be easier (100 miles, thruway bus only), but still very difficult. Commuting from Gilroy to San Francisco is fairly feasible (75 miles, minimal train service, peak hour only), but you might get stuck in SF or San Jose. Just because the commute to SF from Monterey isn’t going to take all day doesn’t mean the Monterey commute is feasible on a daily basis, or that commuting from Gilroy to SF is a piece of cake.

    (By the way, “intellectual disability” is something different than “learning disability.” The first is the current term for what was formerly called mental retardation, and the second is a category that includes dyslexia–and I know some very smart scientists who are dyslexic. I suppose someone could have both, but they’re different–like having a sprained left ankle and broken right ankle.)

    I have no idea what “some Claytons Autism” is, but I want to reassure you we are on the same side and I never meant to offend you by implying your son is not going to have major challenges. Thank you for having reasonable concerns. I hope your school district can implement sensible anti-bullying measures, and your son grows out of wandering.

  20. rose May 9, 2011 at 13:40 #

    Sharon:

    I don’t mean to be disrespectful, and for years I was on your “side”, or…thought exactly the way you think.

    But at age 17 for my sweet Benibar, I now see people I knew in the past, who would today have a label of autism…and it ticks me off. To see how far Ben has come (ALL children develop, whether or not they receive specialized –i.e.– expensive therapies or not) and to think he has had a label of “behavior disordered” or “mentally ill” or “learning impaired” or anything else put a cockleburr in my saddle-blanket!

    Years ago, Thom Hartmann had a theory that some kids were hunters (high strung,sensitive to changes in environent, goal oriented, independent) and some kids were farmers (settled, quiet, followed the crowd). He also talked about a neurological difference that was punished in the past, and even had a name…sinister. Of course, he was talking about left-handedness, a difference that was punished. Kid’s left arms were tied up, so they could learn to write ‘the right way’. We are no different now. We punish kids who learn and act differently than ‘the right way’.

    I believe with all my heart that there is a developmental trajectory that is similar in “true autism” and kids with brilliant minds. Why that is so, I don’t know. That’s for science to figure out, if they can pull their head out of their rationality for a bit. Today, too many brilliant kids think they are defective. It makes me sick. If everybody tells you you are mentally ill, I think you begin to believe it. I think what we are doing to a generation of kids who think outside the lines is very sinister, evil incarnate. I love biblical allegories…think of the money changers at the temple. I am so pissed, I’d like to tip their tables, these “experts” who are pathologizing childhood, while ignoring true disability.

    For your son’s sake, I hope he fits my idea of a shadow syndrome. He has a chance, then, at a very independent life. And personally, you won’t have to wonder how he will be taken care of when you are gone.

    You talked about the “indigo children” once. These parents might not fit the idea of a rationalists ideal…but they saw their children as special, not defective. A child is a child is a child, who needs their parents, or someone’s unconditional love. I have to grant them that. They romanticized their children, but they did not medicalize them. Today, I am more like them than the neurotic neo-psych mom I was, searching for science’s answers.

    As long as Ben is happy, what should I give a FRA. And he is happy. I continue to apologize to him for my ignorance in the past. I didn’t know. But my family did.

    “There’s nothing wrong with Ben.” Man, they ticked me off so much I nearly had a nervous breakdown, because so many “experts” were telling me he was autistic. Turns out, they were right. He marches to the sound of a different drummer, just like I used to do. He’s adopted, which makes it weird. But he’s JUST like this mama here. Goofy, straight up, with a twist.

    I don’t have a lot of friends, either. I’ll be damned if it ain’t hard to find birds like me. But when I do, we have a hell of a good time. They “get” me, and don’t think I’m weird. They think I’m just like them. Human. NOT “the other”.

    I think you’d be surprised to understand that ALL of us are in the DSM, except for an insufferable 4% who also think they come from functional families. What a bunch of assholes.

    Life is messy and ugly at times, hard and exhausting, and many find it impossible to survive. I’m not going to slap a label of mental illness on my son and cripple him like I see so many beautiful minds being crippled by labels if they hold on to them, and not dismiss them. These young people think they are inadequate. It’s so sad.

    I can’t tell my son how sorry I am for what I attempted, unwittingly, to do to him. He is different, yes, but it is a gift, like dyslexia. A different way of seeing the world.
    Things are changing.

    I can’t tell you how many people I’ve met who were considered retarded, or who were considered learning disabled, who even went to special schools…who enjoy success as adults. Is it just a coincidence, are they the lucky ones? Somebody believed in them. Saw themselves in them.

    Kids with true autism, no matter how much therapy they recieve, will never lead independent lifes. Not even for a day.

  21. Kev May 9, 2011 at 19:44 #

    Kids with true autism, no matter how much therapy they recieve, will never lead independent lifes. Not even for a day.

    Maybe, maybe not. But I feel there’s a difference between true independence and true happiness – one is not dependant on the other. My own child sounds a lot like yours and whilst xe may never be 100% independent, I can do my absolute best to ensure I give xyr enough happiness and confidence to be as independent as xe possibly can be.

  22. rose May 10, 2011 at 00:22 #

    I remember, Kev. I remember xyr. I never forget kiddos.

    Sure, it was SCARY when Ben was young. And SO WHAT if he lives with me all his life. That’s gonna be happening to more and more kids in this economy. He sure as hell isn’t going to be sent off to a mental institution. And I do think he could survive on his own, just like I did…maybe not WELL, or as WELL as I might have hoped I would have…but,he’s a hard worker.

    Somehow, I’ve accepted I would have probably had a label. And you know what, if some shrink wouldda been in my face in grade school offering therapy for all my inadequacies, I’da lost my effing mind. I put myself in Ben’s place and I just got pissed, excuse my french! And i see these brilliant kids putting themselves down online and I just could cry…It ain’t right, Kev. It’s no sin to be different, it’s no great honor, either…I just can’t apologize enough to him. He isn’t, and never has been, a label. He just shrugs it off.

  23. rose May 10, 2011 at 00:24 #

    Okay, okay, he is NOT a label.

    He is, however, a smart-ass and a character.

  24. sharon May 10, 2011 at 01:00 #

    @Anne, Claytons was a non alcoholic adult drink that was popular some decades ago. Their slogan was “the drink your having when youre not having a drink’. So the term Claytons is used nowadays to infer that something is not the genuine article. Sorry for any confusion, it’s a common phrase where I am in Australia.

    @rose, I hope I have not given the impression that I would want to change my child in anyway. He is fantastic just the way he is. I absolutely agree it’s no sin to be different. My son will grow up hearing that message loud and clear.

  25. McD May 10, 2011 at 06:44 #

    @ Sharon, I don’t think anyone can draw the boundary for real and Claytons’ autism. My second boy would certainly qualify for Rose’s ‘true’ autism definition, but I recently had another mum comment on how things were so different for him because he ‘looked normal’. Her child has classic autism (non-verbal) AND Down’s syndrome.

    We were discussing pros and cons – no-body expects her kid to behave, whereas I have had the odd lecture from people who think my child is just spectacularly badly behaved. But she has to strap her boy into what is effectively a wheel-chair with arm and leg restraints if she wants to go anywhere with him – he is able-bodied, but too large for her to control now. At home, they basically live in lock-down. I came away feeling grateful that at least my boy was teachable using specialized methods.

    So there is always someone who is living through a worse experience.

    A thing to consider though, is that there is the experience of both parents and child to consider. While the low functioning child may cause the parents all kinds of grief, if they are well cared for, the child may be perfectly happy – as the young autistic/Down’s lad is. You could not find a happier, more cheerful, young lad – even if he is totally feral.

    The so-called high-functioning kids though, while causing less trouble and long-term concern to their parents, may be going through personal agony as they themselves realise their differences and maybe cope with bullying in a social situation they cannot deal with. Their experience of autism, given their greater capacity for understanding, may be worse than that of the more severely affected child – from the individual child’s point of view.

    Frankly, I have been on both sides, and would not attempt to classify either as ‘the one true’ autism.

  26. sharon May 10, 2011 at 09:02 #

    McD, youve made my point beautifully. in that an acute awareness of difference can be a tremendous source of pain. I suspect it is the ‘higher” functioning people living Autism that are more prone to depression and suicide.

  27. rose May 10, 2011 at 15:30 #

    I would be labelled today. So would most of you, if you were growing up. This madness has to stop.

    • Kev May 10, 2011 at 15:35 #

      Why is it madness Rose? I don’t get why its automatically a bad thing to know more about who you are…?

  28. rose May 10, 2011 at 16:06 #

    Because people, especially little people, are not “mental pathologies”. Because everybody is fucked up…it’s just being human. You got a label, I got a label, we all got labels. The only thing we have in common is we got them from a psychiatrist. Lots of other people got lables, but they don’t know it yet because they’ve never been to a pschiatrist.

    Effing A, Kev, psychiatry causes labels!

    I loved a woman of many labels who spent a month in a mental hospital that was about 5 miles away from her house, conveniently for her husband. She told me 1) the labels change and 2) the really crazy people aren’t “in” the institution.

    I thought of another dividing line, between true austism and pseudo autism…A true autistic does not have a choice in accepting their label, they must be led, as it were, to places they do not want to go.

    • Kev May 10, 2011 at 16:40 #

      Uh-huh, I get where you’re coming from but I don;t see that label as _just_ who someone is. Part of them maybe but all? Nope. If I did I’d have a very rigid definition of myself also 😉

  29. rose May 10, 2011 at 16:11 #

    I’m a dumb bitch, but check this out. Numbers don’t lie…http://hardwonwisdom.blogspot.com/2011/05/numbers-never-lie.html

    In America, the Bush administration controlled the numbers by using fear to garner votes. Psychiatry is Republican. I just damn know it!!

  30. rose May 10, 2011 at 16:38 #

    By the way, Kev, I hate the words labels and psychiatrists. Because I can never spell them right. I’ll give you a few bucks and then I gotta go. Thanks for letting me in all those years ago. I’ll always treasure my autism hub shirt. Twas a time…

    I got to go to a land where the word autism doesn’t exist. I think it’s called the ‘real world’. I’m gonna meet my son there. Love you, and good luck!

  31. Anne May 11, 2011 at 07:29 #

    Rose,

    I apologize for being completely mistaken about your point of view. I thought you were one of those parents who makes a big deal about how awful their situation is because their child has “real” autism, not like those poseurs who just like Star Trek too much. 😉

    Now your point is clear about labels and stigma and self-internalizing holding people back. Although it’s a good description of what happens in our society, my conclusion is that we need to fight stigmatization based on labels, instead of rejecting any useful purposes of identifying differences.

    I volunteer for a non-profit engaged in Disability Rights advocacy. We are fighting the stigma and discrimination against people with all types of disabilities, and the physical & social barriers that prevent full participation in everyday life. If someone needs accommodations based on whatever is different about them, pretending that they are just the same as everyone else isn’t helping them.

    If someone can learn job skills but has trouble learning the rules of a workplace without a job coach, how do we justify hiring a job coach for them if we can’t document this?

  32. sharon May 11, 2011 at 10:01 #

    @Anne, since you work as an advocate for people with disabilities I am sure you understand that all people who are in some way disabled, regardless of severity are entitled to support and understanding. That is the point, albeit in an emotional manner, I was trying to make.

    @rose, I think I understand your issues with labels, pathologising language and constructs etc I used to be a social worker and did my training during the glory days of post modernism where we agonised over social constructs and how language shaped meaning. But I have moved away from the more cultural relativistic ideology to a more black and white way of seeing things. Maybe that is due to my own labels . God knows Ive had a few, including Borderline Personality Disorder in my more troubled younger days. I think I get where you are coming from but i think you miss the value in understanding yourself better via proper diagnosis that Kev points out above.
    BTW- I really like your writing style. Have you thought about a book?

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