Monday, May 23, 2011

Kevin Leitch's take on a cure for autism

I see that Kevin Leitch of the Left Brain/Right brain blog has given his take on the question of whether or not autism should be cured.

I am glad that Kevin Leitch respects my desire, as a person on the autism spectrum, for a cure if one were available. However, he states that this would be a principle of neurodiversity. Again, he seems rather confused about neurodiversity whose proponents engage in scorn, derision and ridicule of any person on the autism spectrum who wishes a cure for themselves.

This is also someone who has stated that he will only seek a cure for his daughter if she asks him to. His daughter, if I am not mistaken, is nearly completely nonverbal so one wonders how much sense that makes. This is a further problem in his argument in that not everyone can choose whether or not to accept or reject a cure, as a very significant number of persons with autism are nonverbal and can't communicate their desire for or against a cure.

Furthermore, autism is a disorder of childhood whose onset is usually apparent before the age of 36 months (I realize this does not include Asperger's and some other ASD's who manifest themselves later in life). Children younger than 18 don't have the right of consent. Their parents have to make medical decisions for them and as Harold Doherty pointed out to Kev, this compounds the problem further.

The most salient question in this debate, at least in my opinion, is are those who oppose a cure for autism willing to foot the bill for the vast majority of autistics who can't work and are receiving disability or other forms of taxpayer funded assistance. And for the treatments and the methods which Kevin Leitch refers to as helping autistics be the best they can be. At least some autistics who oppose curation live on the dole and receive other services at taxpayer expense. Amanda Baggs (whose diagnosis of autism is questionable) is one of the more well known examples of this. Economist Michael Ganz has shown in various studies that autism is expensive, very expensive. Who pays this expense, oftentimes the taxpayers. Neurodiversity has used hardball tactics to dispute such notions, such as Ari Ne'eman's ad hominem attacks on Mr. Ganz, accusing him of eugenics and baby killing in what is supposed to be a professional government meeting. Joseph of the natural variation blog first gave a 30% employment figure for persons with autism which he could give no actual reference source for and used this to claim this would not be a problem in the future and at some point, we could expect nearly full employment of autistics. Later, he went even further to state that based on the adult prevalence study in the UK with only 19 people that this was merely an urban legend that autistics had a higher rate of unemployment than nonautistics and they were employed and made a living in the same manner as nonautistics.

Others have claimed that successful persons with autism such as Bill Gates and Steven Speilberg and their status as billionaires partially cancelled this out, making the net effect of autism's cost to society at least partially moot.

Kev's good buddy Matt Carey (AKA "Sullivan") has been a very vocal proponent of special education and the IDEA law. I wonder If Mr. Carey shares Kev's view about a cure being a bad thing and unnecessary. If so, how does he reconcile this with the fact that the IDEA has cost taxpayers tens of billions of dollars, has jammed the courts,and taken away money for other services financed by local property taxes such as police and fire protection which affect everyone regardless of whether or not they are autistic? Does Carey want to pay for all of these things out of his own pocket in lieu of a cure? So, assuming a cure were available, what right does any autistic person or there caregiver have to refuse a cure? Unless of course they are willing to pay the hundreds of thousands, if not millions of dollars the autistic person will cost society over their lifetime out of their own pocket. I do not believe that an autistic person or their caregiver can have it both ways. That they can refuse a cure or something that will help them function better and continue to be a burden to taxpayers.

I agree with Kev that a cure will be found at some point of time, though most likely not in my lifetime at age 55. It will not be easy though given that Ari Ne'eman can be appointed to various government positions, and rogue scientists such as Laurent Mottron and Isabelle Souleries and Morton Gernsbacher can continue to receive funding from public and private sector sources in spite of working against curing autism. Of course I remember the old Arab proverb, the dogs may bark but the caravan moves on.

28 comments:

Socrates said...

TL;DR, but keep in mind he's an obese Brummie living in Oxfordshire working for a plastics factory and you're Californian, Jewish and have a rich family. You still, even with autism, win the race.

Oh, the largely eccentrics to the point of involuntary detention, of the Autistic Rights Movement UK (all 7 of them) are lining up to pop Ari Ne'eman's cherry on the 4th of June when he will be speaking at their annual conference in the back room of the Dog & Duck public house in Walthamstow High Street.

Gonna be quite the ho-down. Do you reckon they'll hire prozzies?

Kev said...

Well Socrates, you're right I live in Oxfordshire. As for the rest...erm..?

Socrates said...

Sorry, mis-read my informants email - he's an oboe player with a Brazilian living in Oxfordshire walking for pleasure and fun. (LSD being what it is, errors of transcription are likely to occur)

The Fauxtist said...

Kev didn't even give you the courtesy to address your blog post Jonathan. I'm sure his cognitive dissonance over the obvious issues you raise is something he hasn't worked out quite yet.

Kev said...

You're right, I haven't. Thats why I didn't answer. But thanks for pointing out the obvious [eyeroll].

The Fauxtist said...

"You're right, I haven't."

I didn't think he had thought about his position in much detail.

Perhaps he should think harder on the whole "I'd cure my daughter if she asked for it, but she can't ask for it because she can't talk" thing out before posting?

I mean, that's some monumental stupidity to take such a stand when your daughter can't even talk. He put her in a figurative box there didn't he.

Like I've written, these guys are so full of grief over their children that they meander into areas and thoughts they clearly haven't given enough time to think through.

Kev said...

Mr F - do you really know so little about autism that you don't know that autistic people experience delays in communication, not speech. I'll leave you to work out the rest by yourself.

The Fauxtist said...

"do you really know so little about autism that you don't know that autistic people experience delays in communication, not speech."

She's at least 12 to 13 years old.

The nasty residue of Amanda Baggs on a mind is a terrible thing to witness.

Kev said...

Mr F - clearly you can't add up. Thats OK, nobody should judge you for it. And even if you were right, what exactly does her age have to do with anything? People don't stop developing at age 12 or 13. Do you have any kids?

I'd ask you what Amanda has got to do with anything but really, I don't care :)

Socrates said...

My guess is that autistics continue to develop right up until middle-aged senescence - 45ish.

SM69 said...

Kev- The point of the post was how can you claim that you would not consider a cure for your autistic child unless she asked for it; something we all know requires understanding, judgement and communication, an unlikely combination in autism?

What autism are you advocating for? Are you even able to advocate for your own child with such statement? How do you know what she really would like and could aspire to? She has not told you she wants to be cured, so you use this argument to justify your views, but surely she has not told you this either: daddy I don’t want to be cured, I am fine as I am, has she?

You seem to want to tell the blogosphere that you know what autism is and needs, yet, you seem unable to appreciate simple basic knowledge. Speech is part communication skills, and can indeed be totally delayed in autism, as any other communication skills. And the impairments are a lot broader than the triad itself still, as we all painfully know.

The reference to Amanda Bagg was made because you promote her myth, a fake myth of someone appearing as profoundly autistic and in many ways dysfunctional, yet able to be highly intelligent and somewhat effective in her non-verbal communication. But this is not what autism is about, this is only her delusional personality built. You follow this, because it gives you excuses, excuses for failing to be more proactively supportive of your child’s need, excuses for who she is and for who you are with your own mental issues. Excuses for all this time spent on the blogosphere away from reality.

40% of the kids I see are totally non-verbal, they don’t have functional speech and it would take full 1;1 support to teach them to communicate with pictures or an IT support, their difficulty is way beyond communication per se. You have systematically denied that reality.

There are many other issues of health and development that many ASD people share and this reality too is a challenge to your simple conception of autism.

As for your comment on Mr F. I mean, I really thought you were smarter than than this, if there is a value to spending time blogging, surely it should be to at least know who is who, not really difficult.

The Fauxtist said...

"really, I don't care :)"

I think that's the problem pointed out in Jonathan's blog, essentially. You really don't care.

"If my daughter tells me she wants to be cured"...Well, your daughter can't.

Indifference.

Kev said...

Mr F,
lol...is that your shorthand for 'oops I got it wrong;? ;)

Lorene,

When I worry about what someone investigated by the newspapers for ripping off autistic people and their families thinks I'll get back to you. In the meantime, you carry on with your usual shortsighted approach :)

Are you still with Richard Lathe by the way? Just interested, given his unusual legal history.

Socrates said...

Kev,

Are you still cheerleading for AB?

The Fauxtist said...

"is that your shorthand for 'oops I got it wrong;?"

Some of us gather additional evidence and thoughtfully challenge our own assumptions. Some of us stick to dogma at the detriment of our children.

SM69 said...

Kev

Getting personal as your main argument again? Yes, that was all too expected.

And it was also expected that you would criticise the work I do in response, after all, any opportunity you get, you take it, no matter what the actual topic is.

You have always opposed people dedicated to helping children with autism to communicate better, to get the right input in school, to become healthier and to access more effectively their community. Just because it challenges your concept of autism- We see it as a treatable condition that requires the maximal input at every level, including health via a biomedical approach. This contrasts with what you opnely claim, though you also have quietly used this approach with your daughter with some success as I read on AoA. Does it change anything that you continually misrepresent what can be done for autism? Only missed opportunities for some who might be influenced, but I don’t think there are many on your blog that have chosen to sit and contemplate their LFA child struggles in delight and wander. No, these parents are looking for answers and some are available.

As for the cost, I am a parent too, and I too deplore indeed that this is not covered by the state. But thankfully families under a 48K income in UK that is including myself, have this input totally covered by supporting charities.

Autism actually benefits from being challenged with an alternative informed voice, and not to solely rely on what the government can provide, because without this challenge we are in for a deep, long period of trouble and pain. The news abounds with reports of neglect, accident and trauma arising as a consequence of conservative non-action.

What has a former relationship anything to do with this all? Ridiculous and pathetic, perhaps you should have been working for a disgusting tabloid, you seem to have just the right stature for this.

Anonymous said...

If a cure for Autism were found then not only would the LFA be cured of a rather distressing condition but billions of dollars would be saved anaually. Billions are poured into treatment and special edcation for Autism and imagine what could be done with that money. Perhaps hunger could be eradicated in India or Africa. Wait, isn't Ari Ne'eman attending the rather expensive Yale Law? Didn't Alex Plank attend the near Ivy League Georgetown? Doesn't Katie Miller have a (quite useless) MFA from the ultra expensive MICA? How much does an MFA from MICA cost? Over $150,000 would be my guess; same for Yale Law. Maybe instead of attending such prestigious and expensive schools they could've attended cheaper schools and donated the money to people that actually need it, like LFA autistics.

Kev said...

Socrates - who or what is 'AB'?

Mr F - still would've been quicker to simply say 'whoops I was wrong' ;)

Lorene - nothing personal. You are simply part an investigation into what was called The Great Autism Rip-Off.

Thats what you do and why your opinion on autism is about as useful as a chocolate teapot.

As for your ex. That is totally telling on your own personal capabilities. You exposed kids to him, knowing what he is. Did you inform the rest of your co-authors about his conviction?

Get down off your high horse Lorene - you're a scumbag.

SM69 said...
This comment has been removed by the author.
SM69 said...

Certainly I would agree that the financial situation of the family largely influences how well the ASD person progresses. In fact I would rank this as Nb 2 in terms of importance, with the other factors being, from the most important to the least:

1- The type of parent the ASD person has- how determined they are to look for all possible answers, from education to health, constantly assessing what their child needs and making sure this is being provided. Thinking outside the box and looking at real answers rather than quick fix.
2- Financial situation of the family, whether this is in terms of support to access services or in real financial means does not make a difference.
3- The actual child’s disability, keeping in mind that individuals are unique and can at times, face real health, mental and developmental challenges that impose limits, within today’s knowledge to how well the person can improve.

SM69 said...

Kev- The investigation you refer too is what a scumbag is about- none of what is written reflects to what we do- just lies. If you are not smart enough to see though this, not my issue-

You raising it is what being personal is, because the current post does not relate to Biomed. Get over it and get over your failure to help autism.

As for my ex- there too, you are plainly wrong in the way your interpret the facts, how should you know anyhow? And yes everyone is aware of the issue, perhaps you cannot accept the paper, full stop- again, get over it.

jonathan said...

you're a scumbag.

Kev (and everyone else)-I am keeping this comment for the time being, but in the future, let's try to keep this discussion at least somewhat in the realm of civility without name calling regardless of whatever one thinks of Lorene Amet or anyone else whose views or personality we don't care for.

Anonymous said...

FYI: I'm actually working on actually going over to Tibet or India or Ethiopia to help people while you are all over here "doing nothing." Instead of wasting money on a college degree I'm using my money to help people who live in the slums. Yeah, I'm actually doing that: for real. I've e-mailed people in Tibet and Nepal about VOLUNTEER positions and am paying for my own way while teaching/volunteering. FYI...

Anonymous said...

I apologize for my anger: but stuff like this makes me angry, especially when rich Americans say stuff to me like "People in Ethiopia are starving" and yet they have a $75,000+ college degree. I do not have cable, I do not have the internet, I do not have a car, I cook, clean, have very few possessions, live in a small house with two other people, buy everything used and so on and so forth...

So, I don't really want to hear it...

I get an SSI check and food stamps, which is like WAY less then 1% of what they actually make in a year. And, truth be told, if I didn't get SSI and food stamps I couldn't eat since the cost of living is so high here. Hence why I am taking my savings and moving to help people that actually need it.

Socrates said...

Kev,

Cheerleading for the same AB who's widely regarded by those with at least an ounce of scepticism, as having perpetuating a monumental and grievously offensive... umm... fraud.

And, at some risk of tarnishing your lily-white image, have you ever knowingly/accidentally made a false statement during the course of your professional activities?

Kev said...

Ahhh - AB = Amanda Baggs?

Amanda's quite capable of fighting her own battles. She doesn't need me to do it for her.

And of course I've accidentally made false statements. Who hasn't?

Lorene - you are someone who preys on autistic children and their families for financial gain.

As for my ex- there too, you are plainly wrong in the way your interpret the facts, how should you know anyhow? And yes everyone is aware of the issue, perhaps you cannot accept the paper, full stop- again, get over it.

Wow, a mishmash of English but there you go. Are you saying that everyone who co-authored that paper was aware of Richard Lathe's conviction? Or was it just you? I'm genuinely interested?

Sm69 said...

Kev Leitch- other than denying today's autism reality you do nothing to the cause.

As for what we do, you could not possibly care to actually know- biomed challenges your limited rosy view of ASD, so you cannot see beyond this. Get down your high horse, you cannot even follow the thread here, who is AB? Just after referring to Amanda Baggs I mean, what do you actually understand???

jonathan said...

The arguments in this thread are getting out of hand. It is time to close the comments for this thread.