Monday, March 16, 2009

Autism Murder Charges - Time To Pull Our Heads Out Of The Sand

In recent days and weeks two severely autistic young men have been implicated in homicides. In one case, a young man with autism has been implicated in the death of his mother who publicly professed her deep love for her son and the joy that he brought to her. In each case the legal process will unfold and determinations will probably have to be made about the competency of the young men charged. The evidence and facts will determine each case, not the opinions of internet bloggers and media editorialists.

In a general sense though both cases, regardless of the outcomes of the legal processes, point to the need to discuss autism honestly, to describe realistically the challenges faced by persons with autism disorders and family members and others who care for them. As the father of a boy with Autistic Disorder, assessed with profound developmental delay I have seen our beloved son injure himself with biting, and expose himself to greater risks by putting his hand through glass windows and wandering off onto busy streets oblivious to the dangers of automobile traffic. I have also watched with dismay the persistent attempts by some persons with high functioning autism and Aspergers Disorder, and some misguided parents of autistic children, to whitewash the unpleasant realities faced by some persons with autism disorders, their family members and caregivers.

The end result, whether it be court proceedings, where I have occasionally appeared on behalf of some persons with Aspergers Disorder, or lives spent in institutions, two of which I have visited here in New Brunswick, Canada, is not always pretty. We do no favors, no favors at all, to the autistic persons in our lives, if we ignore the negative realities faced by some with autism challenges because other persons with higher functioning autism or Aspergers will feel offended.

Jim Sinclair, Amanda Baggs, Ari Ne'eman, Michelle Dawson, Jypsy, Estee Klar, Kristina Chew, Dora Raymaker and other Neurodiversity ideologues take offense whenever someone discusses negative autism realities. They sign petitions, launch media petitions and attempt to suppress any negative imagery or description of the more severe autism challenges. Such suppression will only prevent the development of possible cures and treatments, or prevent the application of existing well substantiated interventions like ABA. In fact Neurodiversity ideologues openly oppose existing, effective ABA and the search for future cures and treatments. Searches for causes and cures of autism are opposed relentlessly and those seeking cures for their own autistic children are villified by Neurodiversity ideologues. Even the reference to autism disorders as medical disorders is verboten.

Neurodiversity ideologues are unlikely to change. Their views are entrenched and tied to their own public careers as professional "autistics" or "enlightened" autism parents. The truth is that they discourage society from addressing the harsher realities of autism by effective therapy, treatment or cure. They help keep members of the public from understanding the full nature of autism, particularly as it affects the most severely autistic. Theirs is a movement whose aim is to keep everyone from facing autism reality. Theirs is a movement which wants society to keep our heads in the sand and ignore autism reality.

The murder charges against two young autistic men who may have had little control over their actions, who may have had no intent as the law, and society generally, understands that term should be a call that we all hear - a call to pull our heads out of the sand.





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13 comments:

Lisa Jo Rudy said...

Harold - As always, it seems to me that the issue we're facing is NOT "wrongheaded" neurodiversity versus "clear sighted" realism.

Rather, we're looking at an incredibly (IMHO ridiculously) wide range of people, whose abilities, needs and challenges are vastly different.

I can't believe that any of the people you mentioned would say "heck, yeah, lets just let violently aggressive people walk the streets in the name of neurodiversity."

Personally, I do believe too much money and energy is spent in the quest to develop "typicalness" in people with HFA and Aspergers.

But that doesn't seem to me to have much to do with how to manage or support a murderously violent person with autism.

Lisa Rudy (www.autism.about.com)

farmwifetwo said...

I wrote the same style rant... not about this but about the "head in the sand" thing in a comment over Estee's little rant about the book "I wish my kid had cancer". My first post got posted... the second according to a friend hasn't been. I haven't bothered to look... I had my say and that's good enough for me. I'm not a fan of pissing matches.

The jist was... how does someone with a blank cheque book that lives outside the public system DARE to tell those of us that live in it to "SUCK IT UP". Instead of lobbying for us.... they lobby against us.

I don't pretend to agree with everyone's POV on autism... Ok, I don't agree with a lot of most people's POV on autism :)... But don't tell me to "Suck it up"/"Deal with it" when you've never lived in my world.

We do need a better understanding of the more "autistic" end of the spectrum. The assumption that my youngest has MR is wrong... and he's proving that daily. When your Gr 1 teacher admits to you that she's afraid of your happy, laidback, son b/c of the crap she's read.... there's something wrong with the information that's out there. That's not saying there aren't children with HUGE problems... b/c there are... but to generalize... is dangerous.

To assume they all have MR and leave them locked inside their heads and frightened and overwhelmed... is dangerous - your post proves that. To not teach them to deal with "the world" in general around them is dangerous... To tell the Parent's of the children that are uncontrollable to "suck it up and get over it"... is just downright ignorant and uncalled for.

I have the opposite problem with the eldest... just b/c it seems normal... doesn't mean it is.

S.

Autism Reality NB said...

Lisa

I agree that there is "a wide range of people, whose abilities, needs and challenges are vastly different."

The problem with Neurodiversity and, I have named some of the worst ND ideologues, is that THEY refuse to acknowledge that range.

In the case of some Aspergers/HFA persons they presume to speak on behalf of lower functioning autistic persons with severe challenges such as the two young men who now face homicide charges unless professionals determine them to lack legal competency.

Attempts by parents of more severely affected children to discuss honestly the challenges faced by their children and their families are met with derision and hostility by these "autistics" and some parents like Ms Chew and Ms Klar. It is that suppression of honest discussion which HURTS the severely autistic and leaves them more vulnerable to criminal charges.

Some of these ND ideologues have also actively opposed evidence based intervention for autistic children. Ms Dawson, her friend Jypsy, and to a lesser, more recent, extent Ms Klar have been active opponents of parents and organizations seeking ABA for their autistic children, including their severely autistic children.

I have been involved with autism advocacy in Canada for more than 10 years because I have a severely autistic son. I have seen Michelle Dawson and other HFA/Aspergers people fight against parents trying to help their own children.

I am sick and tired of these prima donnas promoting themselves at the expense of other people's severely autistic children.

I am not advocating any specific outcome for these two young men. I don't have all the facts or evidence and I have no place to play in the determination of the processes they face. What I am saying is that if we are going to help such severely autistic persons in the future, and their families, we have to be honest about their specific challenges. And the professional autistics have to stop misleading society about the realities faced by the less fortunate autistics who do not share their gifts.

And we have to research and find effective treatments and cures for what is for those who are severely autistic, a very debilitating disorder.

Autism Reality NB said...

farmwifetwo

The range of autism challenges, as Lisa Jo Rudy, points out is broad. The solutions, the treatments and the cures will have to be broadened to meet those challenges. That can only be done with honest discussion of autism realities.

Neurodiversity ideology causes great harm to the lives of autistic persons with its Joy of Autism nonsense.

Barry Hudson said...

Hi Harold,

The whole "Joy of Autism" makes me physically ill. If my son had cancer and I refused treatment I would go to prison. The ND ideologues just get more media coverage and I have yet to see one of them ever acknowledge the more severe end of the spectrum. There is a growing body of neurotypical [NT] parents that accept the ND argument and do nothing for their autistic children. I have no comprehension how one self rationalizes this concept as a good thing. In fact, when we took our son for JK registration and held his case conference we were asked specifically if we ascribe to the ND arguments (I think the question was “Do you think therapy is a good idea, do you do it, or is your belief to let natural outcomes decide the abilities of your child?”). I almost had a stroke that such a question was asked, after all – who would ascribe to such lunacy was what I thought (our son was recently diagnosed ASD at that time so I was new to the community and did not know then that any sane person would not do what is scientifically proven to help their child). Some parents are content to “look after” their child and I suppose caring is not bad if you define not helping your child as caring (how I see it). What all the ND ideologues seem to not understand is that after they leave this earth their autistic child will be left to whatever services there are (which is near nothing, at least as I know it in Ontario). Without some basic life skills the quality of life these children will live the rest of their lives as adults will be nowhere near the current reality. The real crime here is that the NT parent’s that accept the ND ideology ensure their autistic children get “punished” as adults for the ND error. As the majority of ASD children have the same life span as NT children the years of punishment will be lengthy. Is it just me or does this seem unreasonable? How could one justify this? As I see it, anyone that ascribes to the ND argument is either lazy, do not understand the concept of REAL sacrifice for your child, or are selfish beyond the capability of understanding true love and responsibility. I have read the blog/web sites of many ND’s and once you cut through the crap the bottom line is they have almost no experience in what they criticize and offer no solutions.

Stephanie Lynn Keil said...

I'm starting to wonder if Neurodiversity is really just a cult.

http://www.iran-interlink.org/files/info/cult%20identity.htm

http://www.rickross.com/

navywifeandmom said...

I have never been able to get my head around neurodiversity myself. Why on earth would you WANT your child to remain disabled if they do not have to be? I don't know a single parent of a blind child who would not get their child a corneal transplant if their child was a candidate for one. Why is treating autism or hoping for a cure any different?

I do not understand this and never will. I don't know a single person in real life with a child with autism who doesn't wish that their child did not have it or raves on and on about what a "gift" it is. Not one.

Autism Reality NB said...

Lisa

With all respect I don't think you are aware of the things these people have said and done. Or you haven't thought about the implications of them.

Michelle Dawson appeared as an intervenor in the Supreme Court of Canada as an "autistic" to argue against government provision of ABA as a health care intervention in British Columbia. She subsequently appear before the Canadian Senate committee examining autism and provision of autism services in Canada to the same end. She has appeared on CBC radio and TV and countless other media in her effort to keep parents from achieving treatment for their own autistic children.

Ari Ne'eman, a young man with Aspergers, diagnosed as an adult, with obvious gifts and a full life, including university education, has told the world that "WE" don't want to be cured.

Who appointed these people to speak on behalf of other people's autistic children?

Lisa, I respect the courtesy you invariably show in your comments. Such courtesy is not always found in internet autism discussions.

But, with all respect, I am beginning to doubt that you yourself look beyond the ND perspective. I am not sure that you understand the challenges facing severely autistic children and adults and the families and caregivers who care for them.

Lisa Jo Rudy said...

Since I don't have a child with severe autism, nor do I work with kids with severe autism, you're quite right that I don't know firsthand what it's like. I only know through what families like yours tell me, what I see in other families - and I do my best to envision how difficult it must be. And having a child with HFA is a completely different experience.

And, being from the US, it's true that I don't follow the Canadian autism politics super-closely. So you're right: I haven't read Michelle Dawson's speeches.

All that said, though, I have a sense that you're conflating "ND thinking" with "anyone who doesn't embrace ABA as the ideal therapy for kids with autism." And obviously those two are not the same thing.

I will admit freely that ABA makes me nervous. I don't feel comfortable with the approach or the goals. Nevertheless, I can see that ABA is a terrific approach for some kids, and clearly it makes a positive difference in many lives.

Does that make me an "ND sympathizer?"

I would agree with you that it's inappropriate for people with HFA and AS to pretend they know what it is to be profoundly autistic. They don't (except as I do, through observation and hearsay).

But I still don't believe that preferring Floortime to ABA means you reject treatment for kids with autism!

Lisa (www.autism.about.com)

Marni Wachs said...

Thumbs up to Barry Hudson's comments.

Autism Reality NB said...

Lisa

Your are right. You do not have my experience with severe autism. I have lived for 13 years with my severely autistic son who I love dearly. But who has hurt himself with biting and on occasion banging his head, putting his hand through windows and wandered in traffic. He has on occasion pulled his mothers hair and pinched my face. He does not try to harm when these things happen. But they happen. For some severely autistic children and their parents it is much much worse.

I am a former president of our provincial autism society and a current director here in Frdericton. I have with other parents fought with some success for changes to help our autistic children. We have preschool and school services now to rival any state in the United States in terms of access by the whole population to these services as opposed to purchase of such services at a specialized facility by a select wealthy few. If you doubt my words on that, as you obviously doubt my own experiences with autism because they differ from yours, you should know that the programs here have been externally reviewed and recommended by Dr. Eric Larssen.

In order to fight to obtain these services we had to overcome the rhetoric of those who read and believed the words of people like Michelle Dawson a person diagnosed with autism as an adult and who shortly after being diagnosed appeared before public tribunals and media to tell the world all about autism and to attack not just ABA but professionals and parents seeking ABA.

We fought for ABA because of the decades of studies supporting its effectiveness and because responsible, credible American agencies like the US Surgeon General (not exactly a radical OR ill informed office), the New York State Department of Health, the MADSEC (Maine) Autism Task Force, the Association for Science in Autism Treatment and most recently the AAP have ALL stated that it is the most EVIDENCE BASED effective intervention for helping autistic children make REAL GAINS.

It is not a case of parents "preferring" ABA over Floortime. Your comment in that regard is dismissive and despite your courteous tone it is disrespectful and ill informed. We fought for ABA because it has been proven to help autistic children. Floortime has no such evidence base to support its effectiveness even if it does make the mother of a high functioning autistic child feel good.

In talking about the establishment of government program, a public program in preschool and schools it is important that evidence based interventions proven to help autistic children and hopefully prevent or reduce the number of cases like the two tragedies that prompted this discussion.

Lisa Jo Rudy said...

Harold - I'm not intending to be dismissive regarding Floortime. I've dug deeply into that particular therapy, and found that there is a great deal to be said for its effectiveness. We personally had excellent experience with it, along with speech, OT, and other therapies.

That doesn't mean I feel everyone should be doing Floortime. And while I understand that you are a tremendously energetic advocate for ABA, I'm not sure why you seem to feel that everyone should be doing ABA.

Because autism IS so broad ranging, IMHO, ABA is NOT for everyone. Should it be available? Of course! Should it be required? I would argue absolutely not!

Lisa

Tara J. Marshall said...

The idea that people who are "high-functioning" do not know about self abuse or injurious impulses is completely false.
There are many of us on the autism spectrum who didn't "quite fit" the full criteria for autism when we were children (we could read, for example, and therefore weren't "retarded enough" to be autistic). We were unable to communicate, bit and hit ourselves and others, but with some growth and development, we ARE able to share OUR experiences.
Now, we can argue forever about whether the experiences of those of us who learn how to communicate eventually are qualititively or quantitatively different from those of a person who never learns how to communicate. I won't deny people the right to continue that pointless argument.
What I can say, from my own personal experience, is that when my limbs are completely numb, the pain from biting my arms until they bleed is better than a complete lack of sensation, and throwing myself into walls served much the same purpose. I can say that pulling my hair out helps me overcome the pain from severe migraine headaches I've had since I was a small child.
I can also say that I've learned to not usually do these things to my body, even though I still have the impulses to do so many times per day. I still bite my hands when I have migraines, and I still bang into walls when completely numb, I still flap and rock... but I only do these things in the privacy of my own room, or occasionally, in public bathrooms.
The people who say that we aren't really autistic are the ones who have their heads in the sand.