So what is ‘cure’?

11 Jan

All I can offer is my own opinion, so thats what follows. Unlike some bloggers I’m not interested in a lawyerly fillibuster designed to ‘win you round’, just in presenting my own opinion.

Cure is by its very definition a total removal of something that ails somebody. Anything else is therapy. So now we need to ask if theres anything about autism that makes someone medically ill to the point of non or poor functionality. Of course there is. People who struggle to communicate such as my own child are ill in two ways. One is the fact that societies failure to accomodate more than one type of communication means that society ‘makes’ my child ill. Two is the fact that autism has affected xyr ability to communicate in an NT world and that to ignore the fact that xe exists in an NT world is futile and that therefore ‘therapy’ is required to address this.

Does this mean that speech and language therapy is a cure? No. I don’t think its possible to make that claim. SaLT doesn’t address autism, it addresses communication.

There is, despite what some will tell you, no cure for autism. No pill to take, no drug to inject, no strategy to follow that will remove autism. There are a variety of differing therapies, some of which are valid and some of which are not which will help an autistic person function in an NT world.

However, what we must never forget is that it is not only up to the autistic person to try and learn to adjust to the NT world, it is also up to the NT world to try and accomodate *all* types of divergence including autism (and schizophrenia, bipolar. quadroplegia etc). This will have an enriching effect on society which largely fears difference.

So we come to the question: would I (hypothetically) cure my autistic child? No. Its not my choice, its xyr’s. Would I would like to do is raise xyr to the point where that choice is able to be seriously considered by xyr alone. Is that likely. No its not. My child has severe learning difficulties. So what do I do? What is the correct strategy? The correct strategy is to live in the reality we have. There _is_ no cure. I give xyr every chance by ensuring the education and therapy xe recieves works as well as it can. And I have seen for myself in my step child just how affective such a strategy can be. Better to live in the real world than exist in a false world of quacky cure.

Update: Read Casdok’s post on the subject. Excellent. As is Clay’s post also.

30 Responses to “So what is ‘cure’?”

  1. Rachel Nixon January 11, 2010 at 09:52 #

    Very well put- you might be interested in a post I wrote recently on getting our ASD children ‘accepted’ and visible in a NT world http://strange-beau.blogspot.com/2009/12/christmas-carols.html

    Best wishes
    Rachel

  2. Casdok January 11, 2010 at 12:15 #

    My Thoughts Exactly!

  3. Irene Burton January 11, 2010 at 14:10 #

    Spot on! With you all the way, well said.

  4. farmwifetwo January 11, 2010 at 14:29 #

    The ND hypocrite card is played once more.

    If you truly believed there wasn’t a “cure” you would not be doing any “therapy”. You would not be hoping, and trying for a better outcome for your child. You would simply accept what is, leave them alone and let them evolve. Instead, you do therapy… therapy which BTW leads to “cure” if your autism is mild enough to allow for the growth to full independance, ie. my eldest.

    Brains are not rigid, they are elastic. By doing therapy you change the very thing that makes them autistic. You allow for growth, allow for socialization, allow for learning, thereby making them less “autistic” every time you work to better you child’s future.

    Claiming that a cure can only be a pill or a brain transplant is a lie at best. Everyone is different, but we all live in society. Society has rules, in an attempt to protect everyone. People of all dx’s need to learn to function within those rules or there is anarchy.

    May your “cure” help your child…. I’ll keep “curing” mine as well.

  5. Jaspersmammy January 11, 2010 at 14:31 #

    wow, great minds think alike! i have just emailed the NAS helpline re just that! i want to let my daughter be, shes happy that way, being allowed to be her true self. services are trying to get her to be an NT, its stressful and the fallout is mis-dignosed as mental health illness. this is causing unnecessary distress, because services think they will ‘cure’ her, instead of listening to her.

  6. Stephanie Lynn Keil January 11, 2010 at 15:25 #

    I only want people with disabilites to be able to function well and live the life they want. For some the barriers are social and for others they are medical. The ones that are severely disabled are impaired by the medical symptoms of their disorder and they all need to be high-functioning. But I suppose this is not a “cure” but appropriate treatment and therapy.

    The problems is that it is currently not possible to do this, which is why we need as much research as possible in the area of the severely disabled.

  7. Kev January 11, 2010 at 15:41 #

    Stephanie, I would say the barriers for _all_ are a mixture of both. I’m not sure how they can be truly seperated. If someone has communicational difficulties who decides (and how) which are medical and which are societal?

  8. Suzanne January 11, 2010 at 16:29 #

    I have 2 sons with genetic syndromes and developmental delays. Their genetic makeup comes with some medical complications, but fixing a heart defect didn’t cure Downs, it made it possible for him to continue his slow and steady progress. My Autistic son does not exhibit any need for medical treatment at this point, but his PTEN mutation does mean we need to watch for tumors. Is this why he doesn’t speak? Would that matter in the course of treatment (SaLT, AAC)? His receptive language gains have been phenomenal lately. We are excited about this development, but don’t view it as a step toward cure, rather making it easier to live with his autism.

  9. Socrates January 11, 2010 at 18:24 #

    “Cure is by its very definition a total removal of something that ails somebody.

    “Cure” for the Anti-Cure brigade is a total removal of that somebody.

    With this kind of Cure comes the baggage of valuing one human being more highly than another, through their innate or acquired abilities and characteristics.

    The Ancient Greeks were very hot on this idea. Ancient Greece was a bad place to be ugly.

  10. NightStorm January 11, 2010 at 21:45 #

    So we come to the question: would I (hypothetically) cure my autistic child? No. Its not my choice, its xyr’s.

    BINGO that is my crux. It’s not parent/educator/doctor’s choice but the choice of the autist!

  11. Leila January 11, 2010 at 22:29 #

    Cure is not a choice. Not at this day and age, when cure isn’t possible. Kind of a moot point. If there was a cure, I’d certainly pursue it for my son because it would make his life easier. That is not to say I don’t accept him just the way he is and that I won’t fight for more acceptance and tolerance out there.

    There are a few false dichotomies in autism discussions, and this one about “if you want a cure you don’t accept your autistic child as a human being” is one of them. The same goes for “if you don’t want a cure it means you’re not going to help your child with therapies”. So I’ll stay on the fence on this one.

  12. daedalus2u January 12, 2010 at 02:08 #

    To me, talk of “cure” in the context of autism always reminds me of curebies; which I define as a parent who wants their autistic child to disappear and a neurotypically developed child to appear in their place, a Stepford child. The perfect child that they feel autism has stolen from them.

    The mind set that I attribute to curebies is that of the old woman in the story by the brothers Grimm of the fisherman and his wife.

    http://fairytales4u.com/story/fisherma.htm

    They want a magical transformation, and will then find themselves never satisfied with what they have. It is always about what they want their child to be, not what the child wants to be.

    To me, a cure of that type is completely impossible, it can’t happen. There are aspects of autistic neuroanatomy that are immutable and while some change is possible, the extinguishing of all ASD behaviors and substitution of NT behaviors is not possible and never will be possible short of a brain transplant.

    Even then, the essence of the rejection of ASDs by NTs is ultimately about NTs rejecting individuals that are not like them, not about the particular and idiosyncratic behaviors of ASDs. Most NTs always have a “pecking order”, and someone is always at the bottom of it. The person at the bottom is always the one who is different. Some NTs are able to not play this NT game, but parents who are curbies are unable to not play it. That is the essence of what makes them curebies. Those who “hate” autism, actually “hate” a part of every person with autism.

    Just like the character in the story, the curebie parents won’t be satisfied with their child living a happy peaceful life, they will want their child to do more, and more, and more. This is the despiration that motivates them to try all kinds of crazy untested experimental quack treatments; chelation, Lupron, HBO2, anti-vax.

    I appreciate that not all NTs think this way, but when people talk of “cure”, that is what some Autists think is being talked about. I think what ASDs want is to be comfortable doing what ever they want to do without being bullied, shunned or maltreated, and to be nurtured and encouraged to grow and develop their potential in the ways they want to develop. To have the opportunity to learn, love, work and play to the best of their ability, the same as any other human being. Progress can be made on that, even without treatments or a “cure”.

  13. Billy January 12, 2010 at 04:07 #

    ““Cure” for the Anti-Cure brigade is a total removal of that somebody.”
    Socrates, stop misrepresenting. You know that’s not true.

    daedalus, being not mentally impaired doesn’t have to do with being a “stepford” child. Why is it so much to ask, to ask to not be mentally impaired?

    “It is always about what they want their child to be, not what the child wants to be.” Nobody has to guess what their child wants. The child naturally would want what the parent and any other person wants, which includes abilities, especially basic ones. It doesn’t have to be wondered about to any greater extent than one would have to wonder if a child would grow up to want to eat sufficiently, have a decent place to live, and other items.

    “Most NTs always have a “pecking order”” The pecking order within NTs and ASDs is between those with and without ability.

    “Those who “hate” autism, actually “hate” a part of every person with autism.” They hate the impairments, and impairments are not part of a person.

    This isn’t about difference, but about mental disability.

  14. daedalus2u January 12, 2010 at 05:01 #

    No Billy, the NT pecking order isn’t determined by ability, it is determined by who can bully. The inability to communicate with the majority community on the terms of the majority community results in second class or worse status. For example, deaf people can lead rich and fulfilling lives without being able to hear. They can’t lead rich and fulfilling lives if they are marginalized and treated like shit. The same is true of any group. Being marginalized and treated like shit by the majority is a disability that no minority can overcome. It can only be overcome when the majority stops marginalizing and treating them like shit.

    Having more ability is no justification or license to marginalize someone with less ability and treat them like shit. Doesn’t matter what that ability or disability is. Usually the top bullies bully and marginalize one group and by doing so enlist their aid in a worse marginalization of another group by both of them. This is how racial politics works in the US. Rich conservatives enlist the aid of poor white conservatives to marginalize poor blacks. The poor white conservatives go along with being exploited by saying “at least I am not black”.

  15. Billy January 12, 2010 at 05:54 #

    daedalus, yes it is. It is undeniable. “The inability to communicate with the majority community on the terms of the majority community results in second class or worse status” There is no “terms of the majority community”. There are only the communications designed by humans, which are based on language, some of which need to be translated between each other. Some have and some lack the ability to communicate. The deaf aren’t language impaired. Language capability isn’t a luxury.

    “Being marginalized and treated like shit by the majority is a disability” No, that is not consistent with the definition of disability. Being marginalized is being marginalized. Being marginalized doesn’t decrease someone’s capabilities. You haven’t refuted anything I said. These things you say of mistreatment are besides the point.

    “Having more ability is no justification or license to marginalize someone with less ability and treat them like shit” I think acting like those with lots of ability are the only ones who deserve it, regardless of what they do with it, while justifying the depriving of ability in those without it through sappy rhetoric and through implying they don’t really want ability, qualifies as doing that. Identity politics has no place in this issue.

    “Rich conservatives enlist the aid of poor white conservatives to marginalize poor blacks. The poor white conservatives go along with being exploited by saying “at least I am not black”.” Well, I wish you would further consider your own point, and acknowledge all of the real disparities within society for what they are.

  16. Clay January 12, 2010 at 08:58 #

    Billy said:
    “Why is it so much to ask, to ask to not be mentally impaired?”

    Because for you, Billy, that ship has already sailed. Your fate was sealed the day you were born, and you’ve convinced us that you were surely short-changed in abilities and mentally impaired to the max. Just the fact that you can think and say, “while justifying the depriving of ability in those without it” proves that you have no concept of what “ability” really means, nor how one attains it.

    If you don’t believe me, then just go on down to the ability store, and load up. You can even use my card. I hear they’re having a sale at Sears.

  17. Kev January 12, 2010 at 09:34 #

    Leila,

    I agree that ‘if you want a cure you don’t accept your autistic child as a human being’ is a false dichotomy but what I think some say is that ‘if you want a cure you don’t accept your autistic child as autistic’ and sadly this often isn’t. I’ve known parents who are sunk deep into the well of quacky medicine, so desperate to normalise their child and so terrified of autism that I don’t know how else to see it. I don’t see how any parent can operate well until that acceptance of their child as an autistic person comes about.

  18. Kev January 12, 2010 at 09:55 #

    If you truly believed there wasn’t a “cure” you would not be doing any “therapy”. You would not be hoping, and trying for a better outcome for your child. You would simply accept what is, leave them alone and let them evolve. Instead, you do therapy… therapy which BTW leads to “cure” if your autism is mild enough to allow for the growth to full independance, ie. my eldest.

    FW2 you have a truly weird take on how other people operate. The fact is there is no cure for autism. If you believe there is you’d better go to the papers as you’d make headlines all over the world.

    And of course I hope for an excellent outcome for my child – what sort of parent doesn’t? Not that I expect any sort of answer from you. You are becoming a very tiresome hit and run commenter.

  19. Billy January 12, 2010 at 10:38 #

    Clay, I don’t think such fate should be sealed by birth and by accident of circumstances out of one’s control. I want things to be changed.

  20. Clay January 12, 2010 at 10:47 #

    People in Hell want ice water. Nobody can give you or deprive you of any abilities, or relieve you of your massive mental impairment. You’re just f*cked, get over it.

    * This applies to no one except Billy the Lurker.

  21. Billy January 12, 2010 at 12:45 #

    Get over it? No way. Never. You make no sense.

  22. Monica January 12, 2010 at 14:15 #

    Thank you Kev!
    I get so sick of hearing that I don’t care about my kids. I’m not trying to cure them so that means I’m doing absolutely nothing for them.

    It IS up to my kids if they would want a cure. But I think a lot of that depends on how autism is portrayed in the home. If it is considered a “dirty” word…then the child thinks he/she should feel shame about having autism/being autistic. Chances are good that those kids would want a cure, because they think they are unloveable.

    My oldest son knows he has autism (he’s almost seven now). I’ve never tried to “hide” it from him. He knows that it makes some things more challenging, but it also has given him some terrific qualities that he might not otherwise have. Which is part of why he is such a wonderful little guy.

  23. lilandtedsmum January 12, 2010 at 14:49 #

    FW2 Your eldest may be independent but are they completely free of any autistic traits whatsoever? Of course not. Face it, your child will always be autistic and there is nothing wrong with that. Unless of course you have discovered that miracle cure, you have been searching for so tirelessly???

    The thing is that autism shapes a large part of who my daughter is. How she reacts to her environment, how she communicates, how she forms relationships etc. I have to ask myself, if I “cured” Lily of her autism, who would I be left with??

    I seek to develop my daughter through proven therapies in order to make her life in a NT world easier but also because she genuinely enjoys being stimulated in this way but I certainly do not seek to change who or what she is and autism is a large part of that.

    Clay – you rock!!!

  24. Leila January 12, 2010 at 16:02 #

    Kev, I think the main problem is that those parents BELIEVE in the quack treatments. I know a few biomed parents who are great advocates for their kids (in terms of acceptance) and speak of their children’s differences with great love, humor, and not despair. Their children are approaching their teens being non-verbal or minimally verbal and yet they do not give up on the DAN treatments. If they realized how ineffective, if not harmful, those treatments are, and how wrong the vaccine causation theory is, then they’d be able to move on to full acceptance. But because they believe in the vaccine causation, they think that if they don’t follow the DAN protocol, they’re being neglectful to their children’s overall health (not only autism symptoms). Once you fall into the biomed “web”, it’s very hard to get out of their way of reasoning. It makes parents very “hypocondriac”, with a constant need to adjust their children’s supplements and diets as if this way they could take some control over the child’s autism.

  25. Clay January 12, 2010 at 18:58 #

    @lilandtedsmom – Thanks. I really appreciated a comment you made on another thread here the other day.

  26. Robert Rampson January 13, 2010 at 10:58 #

    It’s so right to debate ‘cure’ All the above is a thought-provoking thread. My 13-year old autistic grandson will never be ‘cured’ and actually he is such a fascinating, frustrating, brilliant person that ‘cure’ is a totally inappropriate word.

    What was ‘cured’ was his agonisingly painful gut pains and diorrhea – through a radical adjustment of his diet and some non-chemical supplements. This allowed his language and other skills to develop a bit since he was no longer in agony. But he’ll always be autistic. What worries me is what happens when he becomes an adult. Will he be safe in the big wide world?

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