Thursday, December 16, 2010

Kevin Leitch and Simon Baron-Cohen endorse neurodiversity: BFD!

In the better late than never and the old news is good news department. I see that neurodiversity blogger, Kevin Leitch has given Simon Baron-Cohen's recent endorsement of ND a shout out. Most familiar with the issues of ND already know that Simon Baron-Cohen, though acknowledging some forms of autism can be problematic, has neurodiverse leanings. Kevin Leitch has also stated that those of us who write anti-neurodiversity posts on blogs are misrepresenting what it means, but neglects to go into any specifics. My gut reaction on reading this is Big Fucking Deal! But I suppose I should elaborate more than just my gut and try to use my brain (such as it is particularly from the point of view of my numerous detractors). We should also elaborate on how much credibility an endorsement from either of these parties has.

Kevin Leitch, is a web designer, who designed and owned the autism hub, a collection of pro neurodiversity blogs whose original motto was, "We don't need no stinkin' cure". Being opposed to a cure for autism was basically the gist of this collection of blogs in the beginning. Leitch himself elaborated on this in an interview a few years back on episode 43 of autismpodcast.blogspot.com for those who are interested, they can find it on the web and listen to what Mr. Leitch had to say. He is also the father of a daughter with autism who at least at the time of the interview was virtually nonverbal. Leitch went on to say that not needing a cure was different than not wanting a cure and that if his daughter indicated that she desired a cure and there was one he would give it to her. It does not take rocket science to ponder how much common sense Mr. Leitch has, considering he would expect a nonverbal child to state that she desires a cure. Just as Laurent Mottron and Michelle Dawson have accepted a nearly half million dollar grant from autism speaks. SBC has accepted donations from the now defunct cure autism now and his one time postdoctoral fellow, Matthew Belmonte operated in part on a grant provided by CAN. Also, Mr. Leitch has an assistant blogger on his blog, some character that goes by the moniker, "Sullivan". Sullivan has written on the blog how Ari Ne'eman has never said that autism was not a disability. Gadfly has debunked that notion in the past and Mr. Sullivan made rather pathetic attempts at damage control, going on to say that neurodiversity has always acknowledged that autism is a disability.

Leitch's shoutout of Baron-Cohen's recent blurb is particularly ironic in this regard as Baron-Cohen has written an essay questioning whether or not certain forms of autism should be regarded as disabilities. Cohen goes on to compare autism with left-handedness, trivializing this condition. A left-handed person is not impaired in their abilities to accomplish things and get things done. Cohen also compares the inability of spouses to get along and neighbors inability to get along with the social impairments of autism. Of course, bad marriages can be ended and people can move their residences, but someone can't remove their autism so the analogy fails. Baron-Cohen shows his lack of understanding of genetic principles by suggesting that though autistics don't often have children, autism has still remained in the populace so must have some sort of genetic advantage. Of course the most likely reason for this is De Novo mutations rather than evolutionary advantage.

The article goes on with analogies such as autistics might be considered disabled because they spend more time with math than with people and analogies are given that Michael Jordan is fine motor impaired because he does not do needle work and other absurd analogies. It does not touch upon the problems that those with high functioning autism have in finding social relationships, impaired ability to acquire skills and behaviors that make them employable, etc.

Without going into the rest of the rather pedantically written essay, which the interested reader can go to the link and read themselves, I will sum it up to say, that if Baron-Cohen had autism at a severity level of mine, he would not have been able attend graduate school, to become a professor, write and publish his books, marry and have his three children. If such were the case I think it likely he would consider high functioning autism a disability. I believe I would be considered high functioning by most standards.

We also must look at the august list of persons who SBC acknowledges in having contributed to the essay. We can certainly judge SBC by the company he keeps or has kept in the past. Liane Wiley and David Andrews especially are conducive to a rolling of the intraocular muscles. One individual has suggested that autism is something to be celebrated. The other is one of the most cruel and vicious hatemongers in the ND movement. Who engages in a diatribe of profanity with anyone who dares disagree with him. Has a bigoted, condescending and ableist attitude towards your humble blogger, whom he has mocked for being too impaired to have the same academic performance that he himself had. He also has never been in a special education school in his life by his own admission and added the comment that because I was in special ed, that made him glad that he was never in it. In regards to David Andrews, Clay Adams, Phil Gluyas, Kim Wombles and Dave Seidel and probably other individuals in the ND movement who have spent time mocking me and ridiculing me, one of Baron-Cohen's statements regarding ND is particularly ironic:

Stigmatizing anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.

So, yeah, Kev, if you happen to read this, your credibility is zero and I say big fucking deal to your endorsement and Baron-Cohen's endorsement of neurodiversity. I can only hope that if a cure is found in your and your daughter's lifetime you won't listen to Alex Plank's dictum that most autistics don't want to be cured and then come to that conclusion when you ask your daughter if she wants a cure and she does not answer you.

35 comments:

SM69 said...

“Leitch's shoutout of Baron-Cohen's recent blurb is particularly ironic in this regard as Baron-Cohen has written an essay questioning whether or not certain forms of autism should be regarded as disabilities. “

Yes this is because SBC has been essentially working with HFA, though as it as become timely more favourable for him, he has begin to recognise that there are other issues at play in autism and is now interested in gut health problem…

http://www.autismresearchcentre.com/research/project.asp?id=30


As for Kev Leitch, he seemed from what I have read in one excellent post from Jake Crosby, that he has endorsed quietly the treatment approach…and that he has also questioned some triggers with regard to his own daughter’s autism

“Our daughter [X] was diagnosed with low functioning autism at age three. We blamed the DTP vaccine which she had a bad reaction to. She would have very long lasting meltdowns, she would smear faeces, she would exhibit self injurious behaviour, she did not talk at all, she avoided eye contact and her only activity was that involving toys that spun. She walked on her tip toes and the doctor said she had a low IQ (below 70). We were told by mainstream medicine that she was 'unreachable'.”

But then, his story quickly changes, “Today [X] is six and after following biomedical interventions (and some other things) [X] will talk - on Christmas morning this year I went to wake her up and she said 'good morning' to me. She no longer smears feces and is 99% toilet trained, she can write notes to people and knows all the letters of the alphabet and can count up to 40 unprompted. She can use a computer mouse unaided and has numerous favourite websites. The self injurious behaviour is vastly lessened, as are the meltdowns. Her eye contact is now perfect and overall her sensory issues seem 99% under control. She can drink out of a normal cup and use a knife, fork and spoon to eat whilst sitting at the table. In so many ways, this is a different child”.

http://www.ageofautism.com/2010/11/best-of-aofa-jake-crosby-on-kev-leitchs-jab-in-the-dark.html?cid=6a00d8357f3f2969e20147e016ce3d970b

SM69 said...

As for Kev Leitch, he seemed from what I have read in one excellent post from Jake Crosby, that he has endorsed quietly the treatment approach…and that he has also questioned some triggers with regard to his own daughter’s autism

“Our daughter [X] was diagnosed with low functioning autism at age three. We blamed the DTP vaccine which she had a bad reaction to. She would have very long lasting meltdowns, she would smear faeces, she would exhibit self injurious behaviour, she did not talk at all, she avoided eye contact and her only activity was that involving toys that spun. She walked on her tip toes and the doctor said she had a low IQ (below 70). We were told by mainstream medicine that she was 'unreachable'.”

But then, his story quickly changes, “Today [X] is six and after following biomedical interventions (and some other things) [X] will talk - on Christmas morning this year I went to wake her up and she said 'good morning' to me. She no longer smears feces and is 99% toilet trained, she can write notes to people and knows all the letters of the alphabet and can count up to 40 unprompted. She can use a computer mouse unaided and has numerous favourite websites. The self injurious behaviour is vastly lessened, as are the meltdowns. Her eye contact is now perfect and overall her sensory issues seem 99% under control. She can drink out of a normal cup and use a knife, fork and spoon to eat whilst sitting at the table. In so many ways, this is a different child”.

http://www.ageofautism.com/2010/11/best-of-aofa-jake-crosby-on-kev-leitchs-jab-in-the-dark.html?cid=6a00d8357f3f2969e20147e016ce3d970b

Kev said...

"...considering he would expect a nonverbal child to state that she desires a cure."

I'm surprised at you Jonathon. Surely you know as much as most that there is more than one way to communicate. My autistic daughter is, at age 10, not the same child as she was at age 5. Not having children yourself I can excuse you a lack of knowledge about how kids develop and change as they get older but I can't excuse you a lack of knowledge regarding how autistic people (and others) communicate. My daughter still doesn't talk much but she is easily able to communicate her wishes regarding her self. This has been made clear to me numerous times.

Foresam said...

Kevin Leitch, the man who called his own daughter a monkey.

jonathan said...

Again, Kev, you are not being specific about how your daughter communicates, just as you were not specific in your post how I and others misrepresent neurodiversity. Also, the autism podcast interview was a few years ago, what was your daughter's ability to communicate her desires to you then?

If your daughter's communication skills via typing or however she communicates without speaking are good enough to tell you what a bunch of crap ND is and how much she wants a cure, then I am glad and hope a cure for her will be available to her sometime in her lifetime.

Kev said...

She's a ten year old child Jonathan. She's more interested in what's on Youtube or the TV. She certainly doesn't care about a bunch of grown ups ranting on the internet.

Foresam said...

I think what Kev means is that when he taunts her with a banana for a reward, he can provoke her to communicate that she wants the banana.

Foresam said...

This sounds like an omission by Kevin that he is ranting on the internet rather than discussing things intelligently. Of course, since it's not possible for Kev to do the latter, that's all we can expect out of him, or any neurodiverse nitwit.

Kent A. said...

" My daughter still doesn't talk much but she is easily able to communicate her wishes regarding her self."

Unfortunately, our children won't live forever in the bubble that we create for them. Just because we understand them, doesn't mean that the rest of the world will or even be patient enough to take the time to learn.

Kev is still avoiding the reality of his daughter I'm afraid, why else would he spend so much time arguing with the vaccination folks? Its a way to escape his grief which he would do best to acknowledge, not to the world but to himself. That will be the first road to preparing for the future. Unless he has the time and energy to run his blog, skip the hard issues that have no clear cut answers and provide as much of his time and energy to his daughter as he does to his blogging, I'm not sure he'll ever fully be able to move forward and prepare for the future. His daughter's future is not dependent on his internet rants and attacks on others. I realized this about myself 2 years ago and how it was interfering with my ability to be a good local advocate to change and help my own son. Getting into arguments over the internet was just another way to deal with my grief and avoid thinking about the future as a father of a child with autistic disorder. I thought I was doing something worthwhile which I'm sure he thinks he's doing now.

However, he'll get to the eventual stage of taking real action at some point. He's just not ready at the moment.

Kent A. said...

Kev, I'm also going to say that I think you are probably heavily medicating your child based on pictures I've seen of her, you and her mother. This child appears to me to not match the body morph of her parents and in autism, you often find this from a poor diet and heavy medication which has the side effect of weight gain.

Being active in the local autism community here has taught me the tell tale signs of medication and how that looks in autistic children. There are certain meds that are routinely prescribed for autistic people, especially the LFA that have the unfortunate side effect of weight gain. If the child does not match the body morph of the parents, its typically for two reasons. Diet and or medication.

One of the reasons I was booted from the Autism Hub (technically resign but booted was really the case at the time) was that I complained about the number of parents on that site drugging their children and the hypocrisy of claiming to be ND.

So..... Kev may feel guilty about this side effect if this is the case. That is the only thing that would make sense to me as to why he defends mainstream medicine so much in the absence of tackling the real things that affect his daughters life through his blog. Again, it could be projection like it was before with the biomed he did/does with her.

His daughter has only one Daddy. Unfortunately, he spends all his time on attacking other parents rather than trying to fix his local services or expand the opportunities for his child and convincing himself that the bubble he has created for her is something that will naturally survive him. As they say, it takes one to know one and I was one but I came to my senses once the developmental path was so far outside my own that it smacked me in the face. Also, being involved in my AS support group was a life changer and perspective changer because I could see that most people with AS don't live like I do. They live in a world of hurt suffering from unemployment, homelessness, drug addiction and dysfunction. If folks with AS have that much trouble as I could see, I asked myself what in the hell will happen to my AD child? Puts new perspective on things.

At least I hope Kev realizes now that Baggs was and is a complete and utter fraud and that her history was entirely a figment of her schizophrenia. At least if he realizes that now, he has taken a small step in the right direction.

Its really like being drunk. You need to hit rock bottom, deal with the breakdown that is coming and then you'll be free, free to start again and turn your life around and face the future.

Kent A. said...

Part 3
His daughter has only one Daddy. Unfortunately, he spends all his time on attacking other parents rather than trying to fix his local services or expand the opportunities for his child and convincing himself that the bubble he has created for her is something that will naturally survive him. As they say, it takes one to know one and I was one but I came to my senses once the developmental path was so far outside my own that it smacked me in the face. Also, being involved in my AS support group was a life changer and perspective changer because I could see that most people with AS don't live like I do. They live in a world of hurt suffering from unemployment, homelessness, drug addiction and dysfunction. If folks with AS have that much trouble as I could see, I asked myself what in the hell will happen to my AD child? Puts new perspective on things.

At least I hope Kev realizes now that Baggs was and is a complete and utter fraud and that her history was entirely a figment of her schizophrenia. At least if he realizes that now, he has taken a small step in the right direction.

Its really like being drunk. You need to hit rock bottom, deal with the breakdown that is coming and then you'll be free, free to start again and turn your life around and face the future.

JediKnight2 said...

Kent,

I appreciate your understanding about what you've seen from your first-hand experience of those with an ASD.

I was wondering if you've ever had first-hand experience with those who have an expressive and/or receptive language disorder as part of his/her ASD (those who are high functioning in particular)? I could sure use your advice for someone in my situation.

Foresam said...

Kent, Well said!

Kev said...

Wow Kent, 3 comments and not one thing right. No change there then ;)

Anonymous said...

I couldn't have said it better Kent. You are 100% correct. All these ND freak parents do is sit on the computer and rant. It's a great way to avoid giving their kids the proper intervention they need from their own parents. Kristina Chew is also famous for this. Two peas in a pod!

-S

Anonymous said...

Kent A. said...

[...]future is not dependent on his internet rants and attacks on others. I realized this about myself 2 years ago and how it was interfering with my ability to be a good local advocate to change and help[...]

-- heard that

I think that realization may be why so many of the regulars in real autism advocacy have appeared to have grown so quiet lately.

Instead of continually falling pray to their constant sapping of energy and focus,

A lot of us are starting to really realize it for just what it is, and moving on

-- We're busy working to affect real change in the real world, for real people

-- the only place where it really matters

-- leaving ND to be almost little more than one hand clapping in the echo-chamber that is 'these here interwebs'

Foresam said...

The only way we're going to affect real change is by winning the presidency. So, vote for me and we'll lock up these neuroinsane propaganda wizards.

Kent A. said...

Jonathan, you should do a post with just this video with the following caption:

Kevin Leitch says you don't need no stinkin' cure and this video will be all that is in your post:

http://www.youtube.com/watch?v=YE8HjxOC0G0&feature=feedu

Anonymous said...

Videos of of this person have been shown all over the Internet and this has not really made a difference to how LFA is being perceived by Kev of the ND. I am not under the impression that it has helped the family either, others than from emotional support with prayers.

When people don't want to see, they will keep ignoring the problems and not face the reality and Kev etc are unfortunately not the only ones to be criticized for this.

There are yet many more people who suffer, many more families who need help. Equally there are many papers showing a range of TREATABLE issues in autism, why not present and advocate for these as well?

SM69 said...

I was under the impression that Kev Leitch was aware of what LFA autism is and was aware that interventions were needed as this was his very own experience.

I really feel for Jamey and his family but his presentation remains atypical and we can guaranty that if science and medicine had taken the care and attention this family deserve, autism would not be his primary diagnosis. This young adult is very ill, and there is a high change that he does not metabolize or absorb his food correctly given his underweight presentation in addition to what seems to provoke pain and epilepsy. This family has been let down at every levels, but the worse in my mind is at the medical level.

People presenting with epilepsy are at high risk of cardiac arrest during a fit. There are real dangers in addition to the great distress associated with their complex presentation.

Who could advocate for people like Jamey and his family? I doubt people with no understanding of science and medicine could really, as they cannot see what they cannot conceive. Would support with for example, 3 people 24hr a day 7 days 7 be what is needed?

Money is what is needed- Money to buy in the care the parents feel is best, the equipment Jamey could benefit from to communicate, touch screen, various buttons that convey a message, money to pay good doctors to go to the root of the problems and propose some treatment, money to rally families like their together and set up a research fund, whilst Jamey’s case is unique in its severity, SIB is common in autism. It needs thinking and actions.

Kent A. said...

I think its sad when someone posts under different id's just to compel communication with someone else they know doesn't want to communicate with them.

The amount of ignorance about autism, even from those that sell their "expertise" continues to astound me. Just a few days ago someone left me a comment on one of my Youtube videos. The person asked me if my son was autistic because he was smiling in a picture from when he was 3 months old because she was told that autistic babies don't smile.

SM69 said...

Expert in autism?

Anyone calling himself or herself an expert in autism is by definition NOT an expert.

Autism is essentially not understood as far as aetiologies go, managements options yes, but that is all. The best attitude to have is to be OPEN, stop seeing this condition in traditional means and from single perspectives (e.g. behavioural issues require behavioural approach or medication to be dealt with, a very classic perspective); think outside the box and use common sense (i.e. what we see should not be interpreted through layers of dogma).

Anonymous said...

I am wondering if people like Kevin Leitch and Kristina Chew, mentioned in these comments, don't themselves have some sort of mental/developmental disability along with OCD. Their writing appears to be exactly the same almost on a daily basis. It's apparent that they feel the need to convince the world somehow that they are brilliant and know it all (BTW, no one knows it all when it comes to autsim) and they just can't seem to stop. I think these parents have real issues. I also read a couple of blog posts of Dr. Chew's and not to be snarky but she posted a picture of herself on one post and there appears to be something physically wrong with her, like a touch of MR. I can't help but think how sad and strange their lives truly are.

Kent A. said...

Another ND parent who apparently ain't so ND is Ken Riebel, author of AutismNewsBeat. In this interview with the AAP, he talks about doing ABA with his kid for 4 years. 4 years!

If you don't believe in no stinkin cure, what the hell are you doing if you are doing ABA with your kid for 4 years?

http://www.aap.org/immunization/multimedia/soundadvice/kreibel_transcript.pdf

Anonymous said...

The ND are nothing but a bunch of hypocrites. Trust me, if ABA, specialized diets, biomed interventions or anything of the sort worked for their kids they'd be singing a different tune! They are simply bitter because they tried and failed and have failed their kids because they have given up. I feel sorry for the kids of these ND parents. They have to be the worst parents ever.

SM69 said...

Anon,

This is a fair point, which is probably true for some.
I came across yet another type of ND that also presents as being opposed to intervention, for the very reason that nothing has worked for her severely autistic son. This person reacted in a different way, but it is illustrative of yet another type of denial. The denial is about not recognizing that autism is a wide spectrum and that those with superficially milder traits do not have a disability. I think it is important to flag this type too; here is what this person had to say to explain the rise in autism, this is illustrative:

“The difference is we call everything autism today.
I don't have friends: Autistic

I am a sore loser: Autistic

I gag on cooked spinach: Autistic
SO SICK OF THIS!!!”


“There is too much emphasis put upon children today to be "well rounded" and popular. Potty training must be achieved by 24 months and if you don't throw the ball back during play dates or throw a tantrum after watching mom try on her second set of new outfits at Nordstrom you somehow are needing to be evaluated for X,Y,Z"

SM69 said...

We must also add another category of personalities within the ND group- those with HFA/ AS- not necessarily parents. They think they represent autism, they think autism is who they are. The LOVE to carry their diagnosis, they are proud of it and of being special. If any intervention or ideas can be interpreted as an attempt to correct/ improve / treat autism, these attempts are seen as a desire to kill their very own identity, a proof that we are intolerant. Additionally, their condition limits the breath of their judgment and their analysis. It inclines an obsessive and systematic range of actions that will only dwell on the very limited conclusions they have reached, invariably.

Those advocating for interventions, do not have issues with these higher functioning people who have chosen to stay as they are. These are not the people we want to change. What we are advocating for is choice, freedom of expression, individual empowerment, independence, and happiness, balance, for your children and for anyone.

Anyone who responds to an intervention, what ever that intervention is, diet, biomed, ABA, VB, RDI etc. etc., will not be changed into another person, instead, this person will become a lot more grounded within him or herself, a lot more able to function at his/her fullest potentials. In this respect, what has been returned is the person’s potentials to function. For example, by preventing the person to fall into destructive meltdowns at the slightest triggers, avoiding becoming confused into a sensory or socially overwhelming environment etc., improving coordination and motor function, improving communication. These are what CAN be done, and there is nothing but love and respect for a person that stimulate these progress to be made. To sit on our ass and be just happy, or just non-committal and non-influential regarding someone who has unmet needs, is ignorance and is what neglect is about.

SM69 said...

Anyone who responds to an intervention, what ever that intervention is, diet, biomed, ABA, VB, RDI etc. etc., will not be changed into another person, instead, this person will become a lot more grounded within him or herself, a lot more able to function at his/her fullest potentials. In this respect, what has been returned is the person’s potentials to function. For example, by preventing the person to fall into destructive meltdowns at the slightest triggers, avoiding becoming confused into a sensory or socially overwhelming environment etc., improving coordination and motor function, improving communication. These are what CAN be done, and there is nothing but love and respect for a person that stimulate these progress to be made. To sit on our ass and be just happy, or just non-committal and non-influential regarding someone who has unmet needs, is ignorance and is what neglect is about.

Anonymous said...

The ND parents seem to love the attention their severly autistic children bring to THEMSELVES and use them like some prized show dogs. Anyone who would say they would never change their autistic child is a mentally deranged parent. Their kids will all end up in horrible residential placements at some point and maybe then these parents will understand how incompetent they have been all these years.

Kent A. said...

Jonathan,

I just want to say farewell. I won't be commenting any longer on your blog or others. I've enjoyed reading your blog over the years. Though I started out against what you believe, I've come to have a more nuanced view of you and of autism in general. I'd like to thank you for helping me to see some things in ways I hadn't thought of before such as your views of special education which I've come to the realization that you are spot on with that.

I hope the new year brings good things for you and that you find what you are looking for in your life. Farewell and take care.

jonathan said...

Thanks for the kind words, Kent, happy new year

Anonymous said...

Although I believe that vaccines and other environmental issues are the cause of the increase in autism, I believe in exceptions to that theory. In the cases of Kev and Chew I believe the autism in their children is 100% genetic because their parents are such complete oddballs.

SM69 said...

To have autism “genes” in the family does not rule out an environmental component. Kev expressed it well, his daughter regressed after vaccination, of course he does not promote this information any more, none the less, this was his observation.

The point is that his daughter and Christina’s Chew’s son are a lot more affected than they themselves are. They have a job, they have married, have had kids, can speak and they can function independently, they can blog. I might not agree with what is being said, but a difference of opinion, even if someone is clearly biased, dishonest, obsessive, present with limited range of interest, insulting, aggressive etc. is a pain, but that’s all, that’s not the end of the world.

I am more amazed that some people would read Kev’s blog and somehow judge autism and science from what is being said there. I don’t know how many do this, likely the blog counts do not reflect true readership and certainly the number of commenter is very limited. None the less, some people clearly use their argument to view autism, and that is more of a concern than a few people presenting as “oddballs” as you put it.

There is a great repression of the truth in autism, a great level of dishonesty, even those on the spectrum, supposedly very honest aren’t. An old Spanish say “there is a wooden knife in the carver’s knife house”, meaning people are not who they present as, personally I am sick with this pretending. I cannot see how people can live balanced knowing about this great travesty. Denial I suppose. Why isn't more obvious to those around? That's how some go through life faking.

I am building a YT channel with unrepressed views from people and families with autism. We should be a lot more humble and listen to these varied voices, even if they challenge our perception of autism, even if they are minorities. This is where autism is written, in people's lives and histories, not in books.

Anonymous said...

I truly believe reality will hit home to the ND parents when their children are no longer children, there is no school to send them to and they are completely unmanagable because of the denial their parents have lived in for years. Many, if not all, of the ND parents are clearly on the spectrum themselves and have absolutely no judgement it seems. I have no doubt their kids will be in some sort of hospital/residential setting in their 20's and beyond. Hopefully their states will fund it or these parents will also be bankrupt.

Anonymous said...

http://www.telegram.com/article/20101216/COLUMN01/12160854

One can only hope this isn't the end result of years of denial for some parents.