And if some of us stop and realize some of the superiority comments are meant to be ironic or humorous, because yes some autistic people are capable of both… maybe we can be a little less offended? I know I misunderstood one post until I noticed it was tagged ‘humor’…. Which is really terrible of me because I often use the same kind of humor as was used in the post…

and I am a mother with a profoundly nonverbal autistic son. I think money is wasted on finding a cause or cure when we should be putting research into treatment and therapies and family supports, as there will not be one cure for this spectrum disorder. I apologize for the negative terminology, but that is what my son’s diagnosis is, Autism Spectrum Disorder. It is also frustrating when people right off Autism Speaks. It is the largest, best funded Autism organization in the US. When people want to donate money to autism, it usually goes there, unless they do research first. the stores asking you to donate money for the benefit of autism? there. And yes, they are very early intervention focused.

The thing is, we can’t cut down a therapy that actually helps quite a few. Also, not all ‘behavioral’ therapy is ‘ABA’ and not all of what gets called ‘ABA’ today is what it was years ago. Often the term ‘ABA’ is used for the behavioral therapy just to get the insurance to pay for it. My son’s school uses lots of behavioral therapy. It is very very largely based in positive reinforcement. So even when they have to tell the child no, they praise the child for using communication effectively (I observed one child crying because he wanted to play with his toys, instead of do his work – the teacher told him know and complimented him as well. She was very soothing, but firm)

The problem with demeaning low functioning autistics in order to get them support is that it includes a stigma around it. Helping the disabled is not considered a worthwhile career, we view those who work in such a setting as someone who has sacrificed, so we find few in the position that actually want to be there, and therefore the disabled are not treated well. Our local Community Mental Health hires those who have received services or who have relatives who received services first, to increase the chances of quality care.

Also, we cannot count on siblings to take care of our children after we are gone, as they may not want to. So we must band together and push for services for adults, now, so that our children will have services when they are adults.

We need to push away the stigma, while simultaneously enforcing the need for services.

IE: My son is a beautiful, joyful, wonderful child, who has taught me much, but is unable to take care of himself. We need supports.

Looking at him negatively, being disappointed that he does not do x, y or z, only creates more stress for me. It only causes people to pity me. I don’t need their pity. Pity gets me nowhere. Research into what causes autism for some small percentage of autistics doesn’t get him the services he needs. While this research is necessary, as the more people get early intervention the more likely they will be equipped to take care of themselves, the more we are able to explain what the disorder is, the more typical people will understand and perhaps take action, but we also need to fund supports, for both families with children and for adults with autism NOW.

And I know at least one member of the neurodiversity movement that has bipolar disorder and considers themselves a member of the neurodiverse. I am married to a man with adhd and bipolar disorder. My daughter is very bright but ‘emotional impaired.’ She lacks a diagnosis at this point but seems to very likely be affected by anxiety and depression. I want acceptance and supports for them just as I want them for my son. And in many ways, getting acceptance for them is harder. Because they can talk, and people expect that this means they can behave just like everyone else.

And for those unaware of movements with other neurological and mental disorders, one need only to look towards the campaign for the brain… http://www.silverribbon.org/ (I like this one as it is a way to support my whole family with one ribbon, well my whole family except for maybe my youngest, who swings typical….)

And reading about this tragedy, and reading about the 4 children, makes me wonder why our services spend so much time worrying about moderately messy houses… (IE *OH MY GOD, you haven’t mopped in 2 DAYS! HEALTH HAZARD!!!!! well, it has to be every two days in my household… They say it’s not acceptable if It’s been less than a week since I’ve mopped, I even got a negative review the day after I’d vacuumed… – I mean, the services have helped us, but I am sure there are kids in my county that need it more… also with the number of IEPs that one of my workers goes to, I wonder why they seem to be targeting families with kids with special needs… because the special needs make it harder for us to live in what the state calls normal? but then maybe that’s why I never see one of the workers… he’s too busy helping the families that really need it. I mean we’re messy, and with my husband’s bipolar, I can see why we’d be labeled ‘at risk’, but I’m a bit baffled when the CMH workers tell me I’m doing a good job. I wish I could say ‘Good, can you tell the DHS workers that?!?’)

Never mind neurodiversity, we all forget our ancestors who lived in more “interesting” times.

It is very hard for most folk to eschew (no pun intended) there cultural positioning to actually essay an empathy with a world before todays complex nosologies existed, when if one were not “us” one was either mad, simple, a cripple or a foreigner (like from the next village)

I have gifts a plenty but if you understand the
German “gift” you will see some ambiguity there.

We are all multiaxial, multitemporal and increasingly multicultural.

Those who do not see this are ontologically blind, which is why I the latter day one eyed wanderer, who hung nine days on the tree for wisdom survey a different perspective of regione caecorum.

(Yeah Kristina that is wandering off your classical mythology a little into the Germanic and Norse)

You did know, did you not, Roger, that you have a Norse name out of Beowulf

I’m glad that human services in NJ is going to review the situation for the 1200+ clients, and that legislators are interested, but I am sorry that a young woman, dependent on the kindness and conscience of strangers, had to suffer and die under such dreadful circumstances to flag the review.

Accurately: with respect to the existing science (e.g., not by making false or exaggerated claims; not by discarding recognized standards of science).

Ethically: with consideration to the interests of autistics as autistics (e.g., not by writing off and dehumanizing most autistics–claiming we are doomed without a treatment–is both inaccurate and unethical); without making prejudicial and grossly harmful claims, e.g., not by claming that autistics are just naturally violent and dangerous to others, and will destroy ourselves, our families, the economy, etc., unless we have undergone one specific treatment starting early in life.

Respectfully: e.g., without spreading fear, dread and hatred of autistics; withough spreading false information about autistics that is likely to harm autistics (as it would harm anyone else); without denying that most autistics exist (as in the promotion of the false “epidemic”).

Sorry not much time this morning, but that’s the general idea, and as you can see, they all overlap. I’m concerned at the level of public policy, the law, etc., as well as standards of science and ethics, as these affect all autistics.

If autism advocates in Canada had made their public-policy-level and legal demands accurately, ethically, and respectfully, Canada would be a very different place for autistics right now.

“3. Services for autistics, whatever those services may be, should be asked for accurately, ethically and respectfully.”

Asked for from whom? In this concept what do accurately, ethically, and respectfully mean. Some examples and counter-examples would help greatly?

I no longer believe that either the groups like Autism Speaks,or most neurodiversity advocates speak for a large enough per centage of autistics as a whole.Both sides have only part of the picture,and together they do not have it all.

Just once,I would like to see some advocate of neurodiversity admit that people moderate to low functioning autism experience genuine suffering,and hardships,as a direct result of their autism.

I read the piece on Michelle’s blog,about cochlear implants.I may be a little dense,but I fail to see how this directly applies to autism.

ABA may have its faults,but I would think a more pressing need,would be to try to put a stop to the even more dangerous DAN! treatments,where you have a more clear cut example of quack “doctors”,who are profiteering off desperate parents.Treatments that are actually killing children.
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I must admit,that I,too,have been guilty of using my own autism,as a way of measuring other’s.It was somewhat earth shattering,when it finally dawned on me,that not every autistic experienced serious developmental delays,like I did,or had serious non verbal learning disabilities,in all four categories.That,like my immune disease,these are often diagnoses IN ADDITION to autism.

Looking at it that way,I can sort of see why someone with “uncomplicated” Asperger’s might see it as a “gift”.

I have also learned a good bit in the past couple of days,about self-advocacy,and found out that was what I have been doing all along,but only in a very limited number of areas,like trying to get proper diagnoses.But self-advocacy is not easy, if you lack social skills,and cannot talk well.

Discussions like this,where rational people can air their differences,about a deeply personal,hot button issue,like autism,are few and far between.We need a lot more of them,to get to the point,where everybody understands where the other person stands on the issues,and why. Neither side is going to go away,and we all need to learn to get along with each other differences and all.

Autism advocates have dehumanized and written off most autistics in Canada. I don’t know why–autism advocates have always had the option of making their demands for whatever services they want accurately, ethically and respectfully. But autism advocates have never chosen this option, and autistics have to live the consequences, every day. We do not have any choice.

I also argue against poor standards of science and ethics–applied to autistics and anyone else. That is true in cognitive science and neuroscience, as well as in other fields.

I’ve been a much harsher critic of cognitive science and neuroscience in autism than I have of ABA in autism. According to Mr Doherty, I am therefore opposed to cognitive science and neuroscience in autism.

Science is dependent on criticism. Autism advocates like Mr Doherty have made ABA into an ideology, where any scrutiny or criticism is considered reprehensible and is responded to by name-calling, personal attacks, defamation, etc.

Autism advocates, including Mr Doherty, have never provided any factual criticism in response to anything I have written or done.

As the SCC noted, I am opposed to approaches to autism–no matter what they are–that are promoted by dehumanizing and writing off autistics (in Auton, most autistics in Canada), and by rejecting recognized standards of science and ethics.

The Auton parents chose to provide only two studies in support of their demands, in 5,000 pages of evidence. Neither very small study is an RCT. Only one is prospective, but is dependent for its results on aversive procedures (hitting preschool children “hard,” see Leaf & McEachin, 2008).

Why is this considered good enough for autistics? Because autism advocates have successfully imposed on all autistics their position that autistics don’t deserve to benefit from or be protected by recognized standards of science and ethics.

As I’ve written here before, the AAP report Mr Doherty promotes, even in 2007, cannot make the case for ABA-based interventions without resorting to 6 papers (Mr Doherty is promoting these papers) variously dependent on aversive procedures, including strong aversives like electric shock.

Also, the AAP could not find more than one small-N RCT (where the intended comparison between groups was actually carried out) of ABA-based autism interventions, and this study was largely a failure (Smith, Groen & Wynn, 2000, 2001; don’t forget the authors’ erratra). That’s one very small and failed RCT in 47 years of research.

These are the scientific and ethical standards autism advocates have successfully imposed on autistics.

I also suggest contrasting the AAP report re risperidone (which is FDA-approved for some autistics) with a systematic review in which recognized standards of science and ethics were applied (Jesner et al., 2007).

I don’t see how dehumanizing and writing off autistics (e.g., see the Auton and Wynberg trial decisions, fully supported by Mr Doherty and all autism advocates), and depriving autistics of recognized standards of science and ethics, helps autistics, any more than it would help anyone else.

Ms Dawson now alleges that I misrepresented her position in the Auton case:

“My position in Auton is publicly available and has been since 2004. I’m not going to repeat it here. But Mr Doherty is as usual misrepresenting it.”

Ms Dawson is, once again, dead wrong. My statement about her position in Auton was a direct quote from the unanimous decision of the Supreme Court of Canada in Auton, in Paragraph 5, where the Court concluded a summary of criticisms of ABA by stating:

“While increasingly accepted, Applied Behavioural Analysis (“ABA”) or Intensive
Behavioural Intervention (“IBI”) therapy is not uncontroversial. Objections range
from its reliance in its early years on crude and arguably painful stimuli, to its goal
of changing the child’s mind and personality. Indeed one of the interveners in this
appeal, herself an autistic person, argues against the therapy.”

Again that is a direct quote from the decision of Chief Justice McLachlin for a unanimous Supreme Court of Canada. Ms Dawson argued against ABA therapy in a hearing in which the issue was government(British Columbia) refusal to provide coverage for ABA treatment for autistic children.

If Ms Dawson wants to accuse someone of misrepresenting her position in Auton she should direct her accusations to Chief Justice McLachlin.The decision is readily accessible on line at:

http://www.canlii.org/en/ca/scc/doc/2004/2004scc78/2004scc78.pdf

2. Standards of science

The only “standard of science” recognized by Ms Dawson is that of agreement with her opinions. Otherwise she ignores modern evidence based concepts of health care and the opinion of all professionals who endorse ABA. In the Auton decision written in 2004 the SCC recognized the growing professional recognition of the effectiveness of ABA as an autism treatment:

Auton, paragraph 60:

“The government’s failing was to delay putting in place what was emerging in the late-1990s as the most, indeed the only known, effective
therapy for autism, while continuing to fund increasingly discredited treatments.”

The Court had previously noted that several Canadian provinces had by the date of trial begun implementing ABA treatment for autism, and that:

“In the United States “several jurisdictions” included ABA/IBI in educational or Medicaid programs, and the New York State Department Guidelines and the 1999 U.S. Report of the Surgeon General on Mental Health recognized ABA/IBI as the treatment of choice (trial judgment, at para. 82).”

Since the trial date in Auton the MADSEC (Maine) Autism Task Force, the New York Department of Health (2005 revision) and the American Academy of Pediatrics (2007) have all discussed in detail the voluminous evidence in support of ABA as an effective intervention for autism. The AAP stated:

“The effectiveness of ABA-based intervention in
ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive
behavioral intervention programs in university and
community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have
been significantly better than those of children in control groups.31–40″

http://aappolicy.aappublications.org/cgi/reprint/pediatrics;120/5/1162.pdf

These are the standards of science and the health care professionals that Ms Dawson dismisses in favor or … her opinion.

3. False allegations about autistic persons

I am not going to dignify Ms Dawson’s numerous false and offensive statements about my views of autistic persons with detailed replies. I have never said anything remotely resembling her ridiculous allegations. I have a son with autistic disorder who is seriously disabled. I find her comments personally offensive and I know many other parents trying to help their autistic children realize the gains identified by the AAP also find them offensive.

Harold Doherty

My position in Auton is publicly available and has been since 2004. I’m not going to repeat it here. But Mr Doherty is as usual misrepresenting it.

I opposed both sides in Auton. Both sides took or accepted the position, which is also Mr Doherty’s position, that autistics aren’t human beings with human rights, and don’t deserve recognized standards of science and ethics.

Both sides wrote off most autistics in Canada, as sick and doomed less than human drains on society who just naturally belong in institutions. Mr Doherty fully supports this writing off, but I opposed it.

In the Senate (what I’ve testified is easily available), I also took the position that autistic are human beings with human rights, and deserve to benefit from and be protected by recognized standards of science and ethics. Mr Doherty is totally opposed to this, and finds this reprehensible.

I’ve appeared in the media almost entirely for one reason. Some research I’ve been involved in got the interest of the media. I have no idea why. But researchers have an obligation to explain their work to the public. The other reason I’ve appeared in the media is the Tribunal case.

The great mystery is why autism advocates like Mr Doherty can’t or won’t make their demands for services, whatever those services may be, accurately (with respect to the existing science), ethically, and respectfully. Instead, autism advocates have successfully written off most autistics in Canada, and have successfully demanded that we be deprived of even minimal standards of science and ethics. This has an enormous effect on the daily lives of all autistics.