Saturday, November 13, 2010

Irrational Neurodiversity Ideology Harms Children with Autism Disorders

The American Medical Association has a commentary titled  Can Parents of a Child with Autism Refuse Treatment for Him?  by Dr. Margaret Moon on its Virtual Mentor AMA Journal of Ethics site,  in which Dr. Moon discusses a clinical case where parents of a 6 year old boy was being treated for an earache confirmed to the attending physician that the behavior he displayed during the visit reflect his autism diagnosis two years earlier.  The doctor advised the parents of an opportunity for treatment  for the autism disorder but the parents refused. because his son's condition was an example of neurodiversity and was not pathologic.  Dr. Moon discusses the ethical implications of the parents refusal to provide available treatment for their son's autism disorder including the question whether  child protection agencies should be contacted by a doctor confronted with such a situation:

"When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed.

She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care.

Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention.

Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency?

Parents and doctors will have to wrestle with the ethical implications of a parent refusing treatment for a child's autism disorder. Personally I don't really see an issue.  A parent has no more right to refuse  available treatment for their child's autism disorder then they would to refuse treatment for their child's broken foot. To suggest otherwise is simply to express the belief that mental health disorders are not as important as physical health issues. That is in itself a form of discrimination against those with mental health disorders.

The parents in that clinical case commentary are responsible for what happens to their child and  they must  wear the blame for their refusal of available autism treatment for their child, treatment that could help their child live a better, fuller life. The parents refused treatment even though it was available and assistance was offered by the doctor.

Blame also rests squarely on the shoulders of those who have promoted the Neurodiversity ideology from Jim Sinclair to Ari Ne'eman and  the large media institutions like the CBC, CNN, and New York Magazine for promoting the Neurodiversity ideology which harms children with autism.  As applied to autism Neurodiversity is fundamentally irrational at its core.

Neurodiversity is irrational in that it accepts that a person can receive a medical diagnosis  called autism, embrace the  diagostic  label  "autism",  identify with "autism", and in the same breath    reject autism  as being a medical condition. Neurodiversity is pushed by some very high functioning people who have been diagnosed with  mental disorders listed in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. ND ideologues embrace the label of "autism" and yet reject the idea that autism is ... a medical disorder ... a mental  disorder. 

When my son Conor was first diagnosed I read some of the ND literature, particularly commentary by Jim Sinclair.   I was unsure whether to seek treatment for my son Conor or not.  I attended a parents support group meeting where the topic was raised and I expressed my reluctance to seek treatment for my son Conor. I was fortunate because at that meeting was a registered nurse with a child with an autism disorder named Dawn Bowie.  Dawn looked me square in the eye, pointed a finger at me and said "you listen mister, you get treatment for your son, if you can, as much as you can".

I am a lawyer, a big guy who has seen a few things and I am not afraid of confrontation.   Few people in my life have talked to me as Dawn Bowie did at that meeting about getting treatment for my son.   She got my attention and I listened. Conor is much better off because Dawn had the guts to tell me, very emphatically, to snap out of it and do what had to be done to help him, to get treatment.
  
The parents in the clinical case commented on by Dr. Moon did not apparently have a Dawn Bowie to read them the riot act.  Many will also be exposed to Neurodiversity ideology, not just through internet bloggers  but also through major media institutions that add a false air of legitimacy to this harmful ideology  pushed  by frequent big media interviews with very high functioning autistic persons who do not want to be cured.

Even the administration of US President Barack Obama has legitimized this harmful ideology by  promoting  a very high functioning young man with Aspergers named Ari Ne'eman to sit on influential health and autism committees. Mr. Ne'eman has told the world that "WE", meaning all children and adults with autism do not want to be cured.  He promotes the idea that autism and Aspergers are social conditions not medical conditions.

Neurodiversity harms children with autism by promoting the view that autism should not be treated and influencing the decisions of parents such as those in the case commentary to refuse available autism treatment for their son. It is sad to think of the development opportunity lost by the boy with autism in the case study commentary by Dr. Moon. It is time for organizations from the CBC, CNN, New York Magazine to the Obama administration to stop romanticizing autism and to stop promoting the anti-cure nonsense of the harmful and irrational Neurodiversity ideology. 

Autism disorders are exactly that medical disorders, mental disorders.  If treatment is is available parents of autistic children should seek effective, evidence based treatment from credible service providers for their children.  If it is not readily available they should consider doing what was done in many states and provinces, including New Brunswick, they should advocate and fight for government sponsored autism treatment for their children.

Do not subscribe to the Neurodiversity ideology.  Your child with an autism disorder will pay the price if you do.

23 comments:

Carl said...

i am going to say i agree with reservations on your position.

i support the use of a therapy based program to help autistic children improve.

my concern comes with psycotropic drugs. things like ritalin etc that i feel are over prescribed for diseases that are at best not clearly understood.

my concern with this stance in relation to autism is the present "research" that is finding similarities between autism and schizophrenia and the possibilities of someone deciding that medicine for schizophrenics should be used to treat autism.

so while when it comes to therapy based treatment i agree whole heartedly but when it comes to drug therapies i do believe that parents are right to question whether it is the best possible treatment for their child or not.

Minority said...

Harold, seriously, what is to prevent the government and pharma from deciding that various drug cocktails are the right treatment and using your reasoning to force them on children?

I agree that the ND dogma can do major harm.

But the desire of the pharmaceutical companies to pursue profits on the "treatment" of children with autism and ADHD and other such conditions is obvious and scary.

Plus, very similar reasoning can be used to force vaccines on children "for their own good".

I'm for persuasion, not force.

Autism Reality NB said...

Thank you Carl.

I understand your concern about psychotropic drugs. Our son has received no medication for treatment of his autistic disorder. I stand to be corrected but I do not think that any medications are evaluated as being evidence based effective treatments for autism. As you move away from the gold standard of evidence based effectiveness then there are certainly other possible decisions to make concerning whether to have your child receive treatment.

I appreciate your comment and I am glad you offered those distinctions.

Autism Reality NB said...

Minority your point is similar to Carl's and I agree that pharmaceuticals should not be forced on children ... unless someday there is clear and strong evidence that such pharma products are effective and safe.
You make a good point and I appreciate your comment.

I do not believe any pharmaceuticals currently meet the evidence based standard for effectiveness or safety. As I mentioned to Carl our son has received no pharmaceutical treatment for his autism disorder.

Stranded said...

Yeah forced treatment is kind of a slippery slope -

For eg. there are many mandatory things out there in the world that I do not agree with which governments will pass as necessary (such as Quebec banning headscarves for female Taekwondo competitors - they call it traditional headgear- whatever).

Anyway - its such a tricky issue this refusal of treatment...right?

On the one hand I really agree with you about parents seeking help for their kid's autism - but being careful about what they choose - how will we decide what is ethical and right or wrong or stupid?

Dolphin therapy, shaman priests, exorcism, HBOT, ABA, RDI, ....

What to do? :D

Anonymous said...

The most important statement is at the end..."evidence based treatment" - let's be careful here - medicine is in its infancy. Handing over anyone, any child, unquestioningly into the hands of the big drug companies (they DO CONTROL MEDICINE, YOU KNOW, must be done with care. Let's always consider all options when utilizing care options. And let's consider that this is a "disease" diagnosed by observation and not by any "objective" testing.Sometimes parents are the best advocates and sometimes not. the same can be said of some medical practioners...sadly so.

Anonymous said...

After having tried everything for my son, I can safely say there is NO "gold standard effective treatment" of any kind for autism. The dr. should butt out unless there is actually something out there that can help the kid (which, as of now, there isn't).

AutisticWisdom said...

Harold, while I agree with your comment in general about treatment being required, in this particular case it would be a tricky decision for a judge to decide.

Many children, even with ABA therapy, will need lifetime support. If the parents in question are going to take care of him for life, would putting him with a foster family willing to engage in treatment be what's best? ABA could recover him but it may not, and then the individual is a ward of the state for life? Could the parents have provided a better life, beyond the treatment? This is a tough one. But I agree in principle with you... to me, doing nothing for a kid with autism is like doing nothing for a kid with autism is unethical and deplorable.

J.Benson said...

I have never understood ND. It seems to me to be indulgent. Anyone dealing with the severe effects of Autism would in all sanity agree that it is a disorder, and we can philosophize all day on why God does it. When I see children for whom Autism is a painful, sad condition, I can't imagine anyone would dismiss this as "diversity". Normally, I support and enjoy diversity, but, if someone told me my son could be pain free, to hell with autism. It's outta here.

Claire said...

How naive of any parent to claim that they will take care of their child for the rest of their lives. How long do they know they will live, exactly? What if they become physically or mentally incapacitated, bankrupt, divorced (we're at 80%)? What if their child's autism has serious behavioural issues like self-abuse or violence? It is the responsibility of every parent to get their disabled child to function at as high a level as possible for that child, for that child's own benefit. For those who have the wherewithal, it is also important to fight for appropriate "housing" or supports to care for the child outside the home.

outoutout said...

With all due respect, I think it would be prudent to point out what the word "neurodiversity" actually means.

Let's go to the Wikipedia definition:
http://en.wikipedia.org/wiki/Neurodiversity

The core belief of the Neurodiversity movement is that all human beings have variations in brain wiring, and differences are just that - differences - not disorders. I understand many do not subscribe to that philosophy.

But let's be clear: Neurodiversity does NOT equal a belief in avoiding treatment for genuinely disabling aspects of autism. That is NOT part of neurodiversity and not what most of us would advocate. Obviously I can't speak for Jim Sinclair or Ari Ne'eman personally, but I'd be very surprised if they have ever advocated a complete "free-range" approach for children. I'm the parent of 2 autistic children and we take them to therapy on an ongoing basis. I'm under no delusions that they will ever be cured - nor would I want that - but I believe that with help, they can be functional and contributing members of society. And I should know, I'm an autistic person myself.

As for the case you've referenced, there is too little information to conclude anything one way or the other. What treatment, exactly, did the doctor suggest? How severe was the child's autism in the first place?

Susan said...

For the most part, I agree with what you are saying here. Unfortunately, my son has received far too much treatment that was definitely not best for him. It's very discouraging when I find myself educating the "experts" on the symptoms and treatment options available for autism. For instance, 10 years ago when our son was first diagnosed with PDD-NOS, we asked our local school district about accessing ABA therapy as we'd heard that was the gold standard. None of the professionals involved with our son had even heard of it. The speech therapist, who claimed an expertise in autism with over 5 years experience, was totally ignorant and thought it sounded like something a "witch doctor" would do.

Now, of course, my son is almost 14 and, while professionals are much more educated now, there seems to be an extreme reluctance to take on an older child.

I would fight tooth and nail against allowing social services to force autism treatment. I've seen too much to ever trust the "experts" again.

Autism Reality NB said...

outoutout

Your opinion about what neurodiversity "actually" means is not clear at all. Your reference to wikipedia avoids the entries that confirm what I have described in my comment about ND:

"Proponents of neurodiversity are striving to re-conceptualize autism and related conditions in society.

Main goals of the movement include:

acknowledging that neurodiverse people do not need a cure changing the language from the current “condition, disease, disorder, or illness”-based nomenclature broadening the understanding of healthy or independent living; acknowledging new types of autonomy giving neurodiverse individuals more control over their treatment, including the type, timing, and whether there should be treatment at all[12]

Autistic supporters of neurodiversity want their way of life to be considered as a respectable, autonomous, and equal way of living. Since autism is inseparable from daily perceptions and decisions, some believe it ought not be separated from the person and treated as a curable disease.

Rather, autism should be recognized as a different but equal way of understanding and approaching the world.

Autism Reality NB said...

Susan I don't know how the doctor with over 5 years expertise in autism was unaware of ABA 10 years ago.

10 years ago parents in New Brunswick, including me, were advocating for ABA intervention.

In making our arguments for government funded ABA we used credible authorities that had already reviewed hundreds of studies providing evidence of ABA effectiveness including the US Surgeon General's office and the MADSEC (Maine) Autism Task Force Report.

Claire said...

Output...I am genuinely curious about this statement: "I'm under no delusions that they will ever be cured - nor would I want that - but I believe that with help, they can be functional and contributing members of society."

Could you answer me this? My friend's "child", now 18 and the size of a man, wears diapers, only crawls, is tactile defensive, requires 24 hour supervision, must be put under anesthesia to have his mouth cleaned a couple of times a year, is generally non-responsive to people around him. Would you want a "cure" for austism if your child was like that? Proponents of neurodiversity do not acknowledge this "sort" of autism. Their anti-cure agenda, therefore, harms children like the one described above.

K said...

ABA is not a gold standard of autism treatment. Never was. There is no gold standard of autism treatment Harold. No matter what any political appointee in the US says. ABA failed your son based on its outcome reporting 47% indistinguishable. It failed my much less severely autistic son as well. If it can't make my son indistinguishable, I doubt those that become indistinguishable ever had autism to begin with. If it should work, it most certainly would have worked on my son who has mild/moderate autism. I'm $200,000 poorer as a result.

farmwifetwo said...

Q is Harold.. Do you want to raise your child or do you want the "state" to?? The "state" in NB says "residences bad, group homes good", "integration good, self contained classrooms bad". So, if the "state" determines "treatment" should it not also determine appropriate housing, appropriate medication, appropriate clothing, appropriate EDUCATION would you put your son back into an integrated classroom???

And the list goes on.

I personally do not understand why parents don't do their best. And "evidenced based" IMO is a joke... and more and more people are questioning it all the time and going back to "teaching children" and treating children as children and their families with respect. This is a good thing. Autistic children are not robots, they do not fit a "once therapy fits all" system of learning. They are individuals with individual needs, strengths and weaknesses and deserve to be treated as individuals.

But, for now only 25% of the population, for whatever reason, advocates. Just ask you Dr, FSW or teacher. I feel sorry for the children, but as a parent that lobbies, fights and shoves to get every therapy, every piece of equipment, appropriate education... as long as I they aren't put ahead of me without doing the work... it's their child, their choice, and I hope they can live with themselves.

Anonymous said...

It is very difficult for me to understand that why some people do not take advantage of available treatments. I am a mother of an autistic child and pay everything I have to get him therapy and the right school. He got much better, and I am aiming for him to be self sufficient. I ask God to give me more time to live so I can see him being independent.He was never on any medication, which was surprising for many doctors, and I did have issues with them when I refused those Psychotropic drugs. They push it on these kids like candy. I was threatened that they will take my child away from me, I was reported to child protective services, and even to the attorney general because I refused those drugs. I came out as a winner always,showing them all the therapies he is getting and all the advances he had made. When intervention is not invasive, I think it is safe to try, and give it a chance. If you do not allow your child to try and advance with available resources I believe that you are depriving them to reach their full potential.

Susan said...

"Susan I don't know how the doctor with over 5 years expertise in autism was unaware of ABA 10 years ago. "

Suffice it to say that we were living in a rural area of Saskatchewan, which still doesn't have a very good autism treatment program available. Had I lived in Alberta at the time, the story might have been very different. Things are very different now but I have lost count of the number of times we have been told by professionals that they can help our son. Very rarely have we been happy with their help. And we've definitely found that bad help is worse than no help at all.

We have another son diagnosed with possible aspergers last year and the services provided to help him are exponentially greater than what was offered our oldest. We haven't given up on our oldest, and we don't buy the neurodiversity argument, but I would never agree that forcing parents to seek a particular treatment option is a good idea. Autism is not a death sentence and you can do great harm by forcing bad help on someone.

johnabraham said...

thanks for posting this useful information with us

Kev said...

Harold after reading this piece and the many misrepresentations it contains I emailed Dr Moon to discuss it with her. She said:

"I usually assume such stories are composites created to present a particular ethics questions"

In other words, none of this ever happened Harold.

Autism Reality NB said...

Kev the article, and the information contained in it, are posted online on the American Medical Association web site VirtualMentor.

Given that source I will accept it as factually correct unless I see a retraction or correction on that site.

Autism Mom Rising said...

My observations lead to believe that it is some high functioning individuals with Aspergers and no children that believe in the no treatments philosophy. Every Neurodiversity parent of an Autistic child believes in treating the disabling aspects of their child's condition (speech, OT, ABA, meds if needed). They are concerned about a message being sent to their kids that they are broken and that is what they fight. It is a philosopy of "you are great how you are but of course you will get what you need".
They are also very scientifically conservative people and don't things like the DAN protocol have been studied enough.

A breakdown in communication happens because we don't ask each other to define the terms. I have gotten in the habit of asking people, "define neurodiverstiy" and have found that the definitions of how to treat Autism vary widely among people.
Take the word acceptance for example. Some people mean accepance as an embrace of neurodiveristy ideology. I use that word but am not Neurodiversity. All I mean by it is that I accept my son's condition, because it is, and don't want to look at him anymore and see tragedy (even though there are certainly tragic aspects to it) because then I can't focus.

Then there is the word "respect". Some neurodiverstiy folks will talk about respecting autistics. Then I ask them to define - because if they mean respect as in proper accomodations, not duct taping kids to chairs and locking them in closets at school, etc, etc,..I'm all for it.....but, if they feel like their own civil rights are being violated because someone else takes their kid to a DAN doc that is just absurd.

So, it always helps when people define the terms.