Monday, May 18, 2009

Autism Blog lbrb: Left Brain, Right Brain Maybe But Not an Ounce of Common Sense

I am not a fan of Kevin Leitch author of Left Brain, Right Brain, father of an autistic child and a devoted follower of Ari Ne'eman and other Neurodiversity ideologues. In a recent post Mr. Leitch posted his answers to what he described as Frequently Asked Questions (FAQ) about Neurodiversity. His answers left me scratching my head and wondering if Mr. Leitch knows what he is talking about or whether there is any consistent meaning or substance to the Neurodiversity ideology.


If there is one constant that has existed in ND ideology it is that expressed so dogmatically by ideologues from Jim Sinclair to Ari Ne'eman: "WE, meaning all persons with any kind of autism disorder, do not want to be cured of our "autism"." Yet Mr Leitch denies that the No Cure position is part of the Neurodiversity ideology although he does so in a disingenuous way that avoids the real issue.



Many parents of autistic children seek to cure their autistic children or to treat their autistic symptoms. In full scale issue avoidance Mr. Leitch claims that ND believers are not opposed to parents treating their own children. They simply oppose parents trying to cure their children's autism disorders. It is OK to treat what Mr. Leitch describes as co-morbid conditions but not their essential autism. Mr. Leitch is being dishonest when he says that ND advocates are not anti-cure. They ARE anti-cure in the context in question. They oppose attempts to cure autism disorders pure and simple. Here is Mr. Leitch's goofy argument in his own words:


"3) Neurodiversity proponents say we should not treat our kids.


False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic." Don’t take my word for it. Go ask the Doctor who diagnosed your child. We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your child’s right to have gastric issues. You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not."


What the highlighted passages make clear is that ND ideologue Kevin Leitch does not oppose your child's right to be cured of a gastric illness but does oppose your child's right, exercised through his or her parents as per the 1959 United Nations Declaration of the Rights of the Child, to be cured of his or her autism disorder. This is exactly what Neurodiversity is accused of when it is said that they are anti-cure. They oppose cures for autism. Mr. Leitch's dissembling denial confirms that very point.


This excerpt also illustrates how little Mr. Leitch actually appears to know about autism disorders. Having a different kind of thought process is not the issue. Having serious cognitive and communication challenges,and serious life adaptive issues, are described as frequently associated with Autistic Disorder as set out in the ICD-10 the European equivalent of the DSM-IV:


"In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation. Most individuals with autism lack spontaneity, initiative, and creativity in the organization of their leisure time and have difficulty applying conceptualizations in decision-making in work (even when the tasks themselves are well within their capacity). The specific manifestation of deficits characteristic of autism change as the children grow older, but the deficits continue into and through adult life with a broadly similar pattern of problems in socialization, communication, and interest patterns. Developmental abnormalities must have been present in the first 3 years for the diagnosis to be made, but the syndrome can be diagnosed in all age groups.



All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.
"



Many parents of severely affected children with Autistic Disorder do not need to read a diagnostic manual to know that autistic disorder can result in serious self injury, threat to a child's life and a life of dependence on the care of others. I have a son who has bitten his hands and wrists many times and I have posted pictures on this blog site of such injuries. I advocated with other parents to keep a tertiary care pediatric team dedicated to autistic children in existence at the Stan Cassidy Rehabilitation Centre here in Fredericton. I know they deal with serious life threatening behaviours in autistic children including head banging, self starvation and other serious threats. I have visited psychiatric facilities in New Brunswick and seen autistic adults living there who were too severely affected by autism to live in community based group homes. Mr. Leitch can cling to his faith in ND and his belief that autism is just a different way of thinking. I have too much common sense and have seen too much to take such a dangerously naive approach to autism disorders.


Mr. Leitch is not done with his non-reality based defense of Neurodiversity. He goes on to trivialize the point made by many parents who, as I do, claim that Neurodiversity is led by persons with Aspergers Disorder or have high functioning autism distinguishable from Aspergers largely by an initial period of limited speech:


4) Neurodiversity proponents who are autistic are different than my child.



"True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof."


Mr. Leitch's argument expressly assumes that all autistic children will eventually progress. His statement that the ND adults are living proof is absolute nonsense. Pure nonsense. Every human being progresses on their own time table to the extent that they make any progress. The problem that Mr. Leitch skips over is that many children with autistic disorder do not progress to attend Simon's Rock College for gifted youths, attend university, have girl friends, boy friends and spouses or grant endless media interviews to the New Yorker, the CBC, Newseek etc. There are many autistic adults living dependent on the care of others in varying degrees of group home and institutional existence. Mr. Leitch simply ignores these autism realities. His argument on this point is too ridiculous to be entertained with a straight face.


7) So why do neurodiversity proponents say they speak for my child?


"The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking for, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?"


Mr. Leitch is free to let people who have never met his child speak on her behalf. I am one parent who would never surrender that right, responsibility or privilege to anyone let alone a stranger whose only connection is a similar diagnosis. The DSM and ICD-10 both recognize a multiplicity of pervasive developmental (autism spectrum) disorders. The differences between Ari Ne'eman's Asperger's Disorder diagnosis and my son's Autistic Disorder diagnosis are very substantial. Aspergers precludes clinically significant cognitive and communication delay which can be present with Autistic Disorder. These are incredibly important aspects of what makes my child tick as Mr. Leitch says. Even within each diagnostic label it is recognized that there significant differences in the extent to which people are affected for example by Autistic Disorder.


In the real world I know as the parent of a 13 year old child with Autistic Disorder and profound developmental delays, who requires 24 hour supervision, who operates at a functional level far below his chronological peers, that my son has little in common with Amanda Baggs who attended Simon Rock college for gifted youths or the media trotting, university student Ari Ne'eman. Nor does he have anything in common with Alex Plank or his now ASD diagnosed girl friend who appears in videos giving public presentations worthy of any good corporate executive.


You may not know what makes your child tick as well as these many strangers do Mr. Leitch but this father who spends each day with my son certainly knows better than they what makes my son tick. It's not even close.




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11 comments:

Anonymous said...

Is Kev trying to soften his message? i can see he is looking for advertising , can we expect supplements and vitamins to be gracing the pages of LB/RB.

Claire said...

I'm sorry, but that last bit about a parent not "understanding" their kid better than someone with a "shared reality" is an especially big load of c**p. My kid has a hard enough time figuring out her own reality, let alone someone else's! Utter garbage. Unbelievable.

Unknown said...

Anon and Claire

I have no idea what could lead a parent to subscribe to the belief that a stranger could understand their child better than they, the people who bring the child into the world, love and care for the child every day of their life.

navywifeandmom said...

"I have no idea what could lead a parent to subscribe to the belief that a stranger could understand their child better than they, the people who bring the child into the world, love and care for the child every day of their life."

I agree. I have said it before and I will say it again - high-functioning autistic adults have no business claiming to speak for my daughter, who cannot speak for herself.

I am happy to report that as of about two weeks ago my daughter, who is six, is completely potty-trained and will take herself to the toilet when she has to go! Still nonverbal, though. I will continue to treat her autism every day the way I have been regardless of what a bunch of adults who do not even know her think about it! And pray for many more successes for her!

Unknown said...

navywifeandmom

Congrats to you and your daughter on a big accomplishment!

Stephanie said...

Once an autistic person learns to use the toliet on her own than she has gained a much greater awareness of herself. I think the reason this is so difficult for many severely autistic people is because of lack of awareness of self. I just wrote an entry about this on my blog! So, hopefully, more sense of self will come!

navywifeandmom said...

Stephanie, thanks for sharing that. Do you mind me asking how old you were when you toilet-trained? You don't have to share if you do not want, but her teacher said the same thing you did - that toilet-training is a BIG jump for a child with autism.

Natalie had the ability to pee on the pot if you took her yourself for about three years but would not self-initiate going, nor would she poop on the pot. The self-initiation just came out of the blue about a month ago and she began doing BOTH poop and pee on the pot without me telling her; she would be flapping her little hands at a picture or eating at the table and all of a sudden she would just get up and head towards the bathroom. Then she relapsed a bit; I ran out of probiotics and she got a yeast infection (she gets these VERY easily; always has) and she started going in her Pull-up or on the floor again. Well, after a week of being back on probiotics (I had to order her some more) she started going again and it has been two weeks with only three accidents (and once it was because the bathroom door was locked; if she cannot physically access a bathroom when she's gotta go she will just revert to dropping her pants and going where she stands). So I think it is safe to say that she is trained. I had to get her used to underwear; she did not want to wear it at first because it feels different, but now she is doing great with it. It is so nice and it must feel tons better for her than wearing an itchy Pull-Up. Now I've got to work on her little sister, who will be three in August.

She still doesn't say a single word consistently but I am hoping that someday she will. I am able to read her gestures, though, and I know her likes and dislikes so we've got our own way of communicating. Her receptive language is very good; it is just her expressive language that is impaired, that and she has no pretend play. The toilet-training thing has been the most exciting thing in this household since sliced bread, that's for sure.

Marius Filip said...

"Having a different kind of thought process is not." - I think this is the biggest lie of Neurodiversity ideology.

Autistic thinking is not "a different kind" of thinking. It is a defective, impaired way of thinking. The impairment may be very big, very small or in between, depending on the severity of the condition.

Difficulty with constructing concepts, difficulty to maneuver abstractions, inability to get non-explicit visual cues or to understand figurative language - among other things which are present even in people with Asperger's - are HINDRANCES, not different pathways of the cognitive processes that are so necessary for us to function.

If autistic thinking is a "different kind of thinking" then myopia or color blindness are a different kind of sight, partial or total deafness is a different kind of hearing and obesity is a different kind of body shape.

Mayfly said...

How many of the ND proponents were low-functioning as children, and at what age? A great many are self-diagnosed. I can diagnose myself with autism. I have some of the traits and I can convince myself that one I have to a high degree.

However, my daughter is truly low functioning, in raising her I have fond out exactly what autism is. She is 12 now. Longitudinal studies show that those who are low functioning make the least amount of progress. My daughter has made appreciable gains in understanding simple commands and questions. It has happened very slowly over the past decade. So yes LBRB is right in saying progress is made. They are wrong in implying that it is the norm for low-functioning children to become functioning adults. Can it happen? Yes. Is it likely to. Sadly, no.

N.B., many children make great leaps in their pre-school years, and can lose the label of low-functioning. This is normal for HFA. However many LFA children actually regress during this time period. My certainly did.

The LFA/HFA ratio has reversed in California. Longitudinal studies as a result will show somewhat brighter futures. These will be trumpeted by the ND types, and the low-functioning will not be mentioned less it spoil the fantasy.

One problem with ND is that it has no stated policies. This even if the great majority are against cures in all cases, if one is for it, the spokesmen claim you cannot say we are anti-cure. If many write that they are tired of hearing all the negative things about autism and do not state them, one or two may be interested in the plight of the heavily afflicted. There is no ND creed, and they hide behind that.

My daughter has also progressed emotionally. We picked her up from camp a couple of weeks ago and when she saw us she smiled and ran five steps toward us!!! These things keep one going. She is a joy. She needs help, a breakthrough, a miracle, or she will not be able to function as an adult. She will need a place where kind people look after her needs and befriend her 24 hours a day. I'd rathe she be cured than institutionalized. Many of the ND types are against facilities which can provide the care my daughter may need besides being against curing her.

farmwifetwo said...

The last one upset me. So, we are exactly the same as other people that have genes similar to ours?? That's what he's saying... that someone with autism is the same as someone else with autism.... well... in our house right down to hair texture, growth rates, to eye colour those 2 children a EXACTLY the OPPOSITE.

We are also a product of our upbringing and our environment... To assume that someone with a dx of any kind, is the same as another person with the same dx, and therefore the one that can talk the most, should speak for the one that cannot speak, is WRONG. VERY WRONG.

I too believe the ones at the severe end of the scale do not progress as well as the one's at the upper... yes, we all mature, we all learn, but only so far as the DISABILITY will allow.

I spent over an hour Sun night adding that post to my journal and sorting out my thoughts on it and writing those thoughts down.... my poor DH got an earful.

NavyMom, congrats on the toiletting. We're 7 and although we "go" we still stain and need to be put on the toilet.

S.

jonathan said...

Hi Harold, I hope you won't mind a shameless plug, but it is on topic. I have written a post on my blog autism's gadfly which you have linked in your blogs that you read so others can find it. It is a post similar to yours, trying to dissect what I feel are the absolutely absurd argument of Kev Leitch. One wonders if he should change the name of his blog from left/brain/right brain to no brain.

Sorry in advance for the shameless plug, but hope i can get readers for my post.