Monday, July 23, 2012

You Listen Mister: Best Autism Advice This Autism Parent Ever Received

Following is a re-posting of an earlier comment: Irrational Neurodiversity Ideology Harms Children with Autism Disorders. As the title indicates it is my personal opinion, not as a lawyer, which I am, not as a medical professional which I am not. It is my view as an autism parent, of an ideology that I feel is harmful to many children with autism disorders, particularly those most severely affected by their autism. For these children solid research and medical opinion has told us for several decades now that early Applied Behavior Analysis is an effective treatment for autistic children. Yet there is an ideology promoted in the mainstream media, and even by US government appointments to the IACC, which reflect the misconception that anti-cure high functioning autistic persons can speak on behalf of severely autistic children, other people's children. In the most extreme cases the Neurodiversity ideologues even discourage parents of newly diagnosed autistic children from seeking early ABA intervention for their children. When parents exposed to this irrational ideology turn away from early intervention they may be harming their autistic children.

I was fortunate, and my son Conor was fortunate, that not too long after his autism diagnosis I attended an autism parent meeting where I met a registered nurse named Dawn Bowie. Dawn's autistic son was a couple of years older than Conor. When I began expressing some of my doubts about early intervention, doubts inspired by reading Neurodiversity literature, Dawn Bowie responded as perhaps only a nurse can do. She looked me right in the eye and in a very firm tone said "You listen mister you get treatment for your son, if you can, as much as you can".

There weren't many autism treatment resources available in Fredericton 14 years ago when my son was diagnosed at the age of two. But I sought out the treatment that Dawn recommended and I became an advocate for autism services in New Brunswick along with Dawn Bowie and many other autism parents. As the parent of a now 16 year old son I don't know if he could have attended school all these years, or if he would still be living with us, if he had not received the ABA he has received and if we had not learned how to manage his behavior through our own efforts to apply ABA principles at home. 

Early effective ABA intervention for your autistic child. It's the best advice I received for my autistic son. Absolutely check with your child's treating professionals but I suspect you will receive the same advice ... get as much early ABA treatment for your autistic child as you can. It was the best autism advice this father of a severely autistic son ever received. 

My previous commentary on the irrationality of, and harm caused by, Neurodiversity follows. It includes references to an American Medical Association commentay in which Dr. Magaret Moon questions the ethics of parents refusing available effective ABA treatment for their autistic children, parents who have imbibed the anti-cure rhetoric.  My comment also includes an earlier reference to Dawn's advice ... the best autism advice I ever received. 

 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.


Þorgerður said...

I too was affected by that ideology it was the first thing I stumbled upon when searching the internet in the beginning when my son was first diagnosed but thankfully I met sensible people who helped me put things into perspective.

Anonymous said...

Thank you for those kind words. After 16years I still give the exact same advice. By nature I am a realist, and as a nurse it is enhanced. Neurodiversity stuff is pure BS..and parents needs to know to cut through that stuff and get ABA treatment which is where the real learning begins.

Dawn Bowie

Unknown said...

Thank you for being there at a critically important time Dawn. And thanks for having the guts to speak up so .... forcefully. I appreciate it to this day and .... I still chuckle when I think about it.

HL Doherty said...

Þorgerður thank you for sharing your experience and perspective.

Just Me said...

My son Jim is about to turn 15 and is the on spectrum. He is between severe and moderate. Dawn's advise is right on. Years ago, when I was in the armed forces I would talk to other parents whose children were newly diagnosed. I always said Find your inner witch (B - is implied) and set her free. She is your best friend, she will fight for your child better than anyone, with tireless energy and spirit.

Anonymous said...

I still struggle with this topic, for a range of reasons.

We used ABA with my son from very early on, and it had a clear and positive impact on his functioning and life. But there were certain aspects of the therapy that I felt uncomfortable with, in particular, some efforts to change his obviously different behaviours. I ended up holding to the belief that trying to change some of those behaviours was going against his identity and "natural difference" (which was a view supported by what I read in ND dialogues).

I now reject not working harder on changing one of those behaviours because it's become very entrenched and that much harder to change, and they're making his life and his younger brother's life harder and more unpleasant than it needs to be. My younger son has picked up and is exhibiting some of the behaviours too (he's not autistic, they're solely picked up from his brother) so now we're trying to get the behaviours under control for both of them. But I do wonder whether we would have ever been successful with the change we sought, and I still question whether wanting to change it now is in his best interests (thus the fact that I still struggle with this topic). I'm still getting my head around all this.

I've been intending to write about the regrets I have, in my blog for a while now, and I do plan to within the next few days, but I'd been holding back partially because I know the post is likely to attract some condemnation from certain quarters. So I must say that though I don't agree with everything you say and believe Harold, I do admire your courage and honesty, and I respect how hard you've worked with your son.

Anonymous said...

(There's a typo in my comment above which makes it harder to understand what I was saying. Just to clarify, I meant to say "I now REGRET not working harder" not "I now reject not working harder".)