How to discuss this most thorny of subjects without either offending someone or getting it wrong? The answers are that you can’t. I’m going to get this wrong for some and offend others.
Recently, Sullivan posted an update from ASF’s Alison Singer who intimated that ASF were on the search for a cure. I want to say that a) I don’t believe Alison Singer was very well quoted and b) Even if she weren’t, it was still a worrying quote for some.
I don’t think Alison, whom I _have_ forgiven (as if she needed it) for her statements regarding Autism Every Day is – like lots of us, including me – very good at saying the exact right thing at the right time. I doubt she has a team of PR spinners ready to oversee every word and I think that maybe those that _are_ in charge of that PR aren’t on the same wavelength as Alsion Singer.
So much for ASF. What about the dreaded ‘c’ word. I’m on record as saying that autistic people don’t need a cure. I still think that. I still believe that autistic people should be afforded every opportunity and every assistance to be who they are regardless of who others think they should be. I know people – those who believe that life is black and white – take issue with that but I think its perfectly valid to respect those who do not want a hypothetical cure to not partake of that hypothetical cure.
But.
There are those autistic people who _do_ want a hypothetical cure. For those, we are duty bound to look for one. Even if we strongly disagree with their reasons, if we claim to respect the right of people to have differeing neurologies, we cannot _ignore_ the ideas produced by those people. We can disagree with them, debate them, whatever. But we cannot and never should ignore their right to have those ideas. To do so stands against everything that neurodiversity stands for in my opinion. Some things are inconvenient truths. This, to me, is one. My own answer to this inconvenient truth is that I don’t like it. I disagree with it. I will still respect the opinions of those who want it. They posses a validation I cannot – they are just as autistic as my own daughter and I cannot and will not force my own ideas on these people.
So, to me, we – those who do not believe in the necssity of a cure – should be reframing the debate. Instead of saying ‘no cure, not now, not ever’ we should (in my opinion) by saying ‘if there ever is a cure, heres how to use it wisely, without pressure or contrivance’.
I think there will be a cure one day. I think its unavoidable. Science is amoral and will search where it will. It has given us electricity and we built the computer and the electric chair. Morality had no say in the discovery of electricity but it shaped the development of the death penalty and how we moraly share information. I think that how we approach the time that this cure is invented/discovered/developed is vital. We can choose to fight against it and lose or we can choose to help shape it to be a morally responsible idea.
Left Brain Right Brain 
@daedalus2u, I agree and recently blogged about that point.
@kassiane, just for the record I don’t want you to shutup. I enjoy your posts.
sharon:
I also enjoy them (and I am glad to see her blog).
Sullivan wrote (re, if a cure existed): “you will be valued and supported no matter what. Here’s a cure. Here are the risks. Here is what we expect to happen. Feel comfortable making the choice, knowing the rest of society will value and support you either way”.
Sullivan, the world needs more people like you.
Other than that, I’m on the same page: until we know what a potential “cure” is, we won’t know if it will “cure” the syndrome (ie timothy) or just a subset of symptoms. The work on MET comes to mind – mutations in the gene are implicated in autism and has a potential mechanism for action in both the brain and the gut. If we could somehow supplement MET protein (probably unlikely, but hypothetically) would this alter brain function AND gut function, or just one? (For example, the treatment may not cross the blood-brain barrier well to impact the brain, or the MET mutation may act in one organ throughout life and the other just during development). The deeper I go into the research, the more I believe autism should almost always be considered on a case-by-case basis.
@ Kassiane,
I also do not want you to shutup. I don’t always agree with you, but I learn a lot from you. Thank you.
Re: comorbidities – I get your point about epilepsy being a discrete symptom, but that doesn’t mean autism and epilepsy don’t have the same underlying cause in many people. I don’t know enough neurophysiology to say one way or the other, but I suspect it may vary person to person. In some instances, curing the epilepsy may mean “curing” the autism, in others, not.
Right now, it’s all just hypothetical, but I assume, if it were possible to cure the epilepsy alone, you would choose to. What if “curing” both autism and epilepsy were the only way to rid you (or someone else) of seizures? Would you consider it? Would you support someone else who does?
@D2u: I have a strong urge to make a button that say’s: “I’m an NT and I try not to suck!”. … though it’s quite possible that that urge belies the statement, as it doesn’t sound much like something anyone with the label “typical” would do.
@ The room at large: How does an adult get tested for being on the spectrum when they know way to much about what the psychiatrists think it means to be on the spectrum to trust that their questionare answers have any validity?
Using the word cure just seems so premature when we don’t understand what autism is and how it develops. I would bet that we will find that this is a wiring issue with a spectrum that has severe autism at one end and as the brain is used in a more balanced way it will look like Aspergers, and then more balanced still will be personality disorders like narcissism and borderline, and more balanced still into the neurotypical range. It wouldn’t surprise me at all if some of the things that work with autistic children help those children wire their brains in a more balanced way but “cures” some of them into something that someone would diagnose as a personality disorder.
@esattezza, Thanks for the advice. I have written myself a little note to carry with me now.
You mentioned testing adults a little later. You are spot on. I know of at least one adult whose actual behavior would meet the DSM-IV checklist criteria for AS, but who adamantly denies any problem whatsoever, and has used his knowledge of the signs and symptoms of autism to effectively ‘fail’ Simon Baron-Cohen’s ASQ. By such a large margin, one would think he were fluffier than an NT female.
Sullivan mentioned adults with ASD who don’t identify as such. There are probably heaps of them. I would never have considered getting help if I had not had my wee autistic boy, and would have just been considered a bit odd or eccentric. But I have been much more comfortable knowing and accepting why I do stuff the way I do since then. It has made a huge difference to my acceptance of myself.
@daedalus2u: I was on a carbonic anhydrase inhibitor for years (YEARS! FOR FREAKING EVER) and then I had a kidney function test come back wonky. Now I’m on Vimpat, which is newer than new with a novel mechanism of action-neuroplasticity stuff & selective sodium channel modulation, and Keppra, which also has a unique MOA.
@esattezza I know epilepsy & autism can have the same underlying cause–that’s how it is for me. But unless you rewrite my cells to rewrite how my brain developed, that underlying cause is going nowhere.
If they could get rid of my epilepsy, but it’d take the autistic wiring with it, I really do not know what I would do. I like who I am, but epilepsy is probably how I am going to go and that sucks. The whole thing came with a lot of other medical issues as well, so it’s a complicated question. I guess it’d be an “I like being me, and things are going pretty well right now, but if my life is under assault from more than one associated condition, it’d be the thing to do.” I really don’t know.
If someone else had the same choice, similar situation, it is their choice and I support what they do for themselves-and if they are similar mindset to me in general, but decide that taking away all instead of nothing is what they need to do, I would go out of my way to support them in the process, because it’d be a sucky situation-that’s a really awful choice to have to make, I think.
@Sullivan Hey, ethics of neurodivergence is kind of my big thing right now.
@everyone who says they don’t want me to shut up Thank you. As an autistic adult I get a *lot* of “shut up” and I appreciate a good dialogue-even a heated one-because I do try to understand other perspectives as well.