28-year-old woman’s death under investigation
November 26, 2008 by Kristina Chew, PhD
Filed under Health
I have been thinking more than ever about where Charlie will live as an adult since hearing about the services offered in different states at last Friday’s IACC meeting. The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
Tara O’Leary had severe developmental disabilities and was a client in a community care residence in Hunterdon County in central New Jersey. Her death is being investigated by both the state Department of Human Services and the Hunterdon County Prosecutor’s Office. According to yesterday’s FOX News, O’Leary had brain deformities, scoliosis, and other severe medical conditions. The residence where O’Leary and two other women lived was funded by the New Jersey’s Department of Human Services’ Division of Developmental Disabilities. On September 11, O’Leary was removed from the home: According to her cousin, Eileen Devlin, medical records said that O’Leary (who was 4′10″) weighed 95 pounds at a doctor’s visit in September 2007. In August 2008, an aunt, Patricia O’Leary, saw her niece, who was “gaunt, with unwashed hair and shoes on the wrong feet.” O’Leary had not had a guardian since the death of her father in 2005 and her aunt asked to be her legal guardian.
Once she was taken from the home, Tara O’Leary lived in an institution for a little over a week before she was taken to Hunterdon Medical Center suffering from dehydration, malnutrition and bedsores and septic shock, Devlin said. She weighed just 48 pounds at check-in.
Devlin said that with a feeding tube, her cousin’s weight rose to more than 70 pounds by November, but her overall medical condition did not improve. She died Nov. 10, days after she, Patricia O’Leary and another cousin became her legal guardians and decided to take her off life support.
The other two women who lived with O’Leary in the house—one of whom had also lost a dangerous amount of weight—have been removed and are now healthy. The woman’s case manager has been suspended.
O’Leary relatives noted that, after the death of her father, they were only able to visit her occasionally and were “never allowed to see her in the home where she was living _ or even to know exactly where it was”—a potential violation of state policy.
As noted in yesterday’s MyCentralJersey.com, the prosecutor’s office is also looking into “the circumstances surrounding the quality of care and death of a disabled adult.” Jennifer Velez, commissioner of the Department of Human Services, made this statement:
“This death is unacceptable on many levels, and we’re doing all we can to scrutinize every aspect and prevent tragedies such as this from occurring again.”
A roundabout sort of statement—so some “aspects” relating to the Tara O’Leary’s care were not being “scrutinized”—-that seems, more than sadly, too evident.
Many parents contemplate what will happen to their autistic children once we die or are too aged to care for them.
It is one important reason why many parents, particularly of the more severely disabled autistic children, do not subscribe to the Joy of Autism ideology.
Here in New Brunswick Canada we have been exporting some autistic adults to the United States, some are living on general hospital wards, some in residential care facilities that, in one recent case, closed with 24 hours notice.
We have made great progress in provision of evidence based early intervention and accommodation of autistic learning in our schools here. But our adult care facilites for autistic adults are abysmal.
We are currently advocating for a new, decent residential care and treatment system for autistic adults. It may be our biggest advocacy challenge.
This sad story, not a unique one, (there was a similar case from Long Island a couple of years ago) adds motivational fuel to all those advocating for a decent life for moderately and severely autistic adults who can not provide for themselves.
You know Kristina I have ever wondered at your monogram, is it simply a monogram or the square and compasses?
Hey Harold are they still pulling teeth in Canada?
Treatment, is that the right word or not? One treats sewage does one not? But one is also trett when one is good. However the connotation of the word is still a medical one, byroads into trick or treat notwithstanding.
One can treat with autism perhaps, but do the Canadians keep there treaties with the autochthons any more than the other Ameryckans do? (Welsh innit)
I do not think treatment is the right word at all for what bespeaks of the need for justice, equality, education, and citizenship.
That is why you are not an advocate despite of how you see yourself but merely one who seeks to contain what you see as contagion.
What is your evidence base? what is evidence, self evident and whatever? Not what you think and certainly not what you see. There are some points where I agree with your erstwhile adversary.
Paracletes and Diaboli eh …… the Devil is in the details
What is decent in your lexicon, please tell me.
Thus speaks the voice of “neurodiversity”,and “autism pride”.I have spent the whole day hand flapping,head banging,etc. .I am not able to currently put two words together verbally,but I am still able to write something more coherent than that mess above my post.Could anybody make sense of that ?
Like Amanda Baggs,one wonders if “laurentis-rex” has autism,or something else entirely.Harold,I can understand why you moderate comments on your blog,but there is something to be said for Kristina’s approach of letting the whole world see these people for what they are.
My mother was away today,and she happened to walk in on me,when I was doing what I mention here,and of course,she got quite upset.She claimed it was because she was “tired of it all”,and threatened to have the cops come over, and take me to the APD psych lockup.
As an autistic adult,I am under constant pressure from both family and health professionals,to agree to go into one of these “community care residences”.It is cases like this one,that are one of the main reasons why I would refuse to do it. Better to give up everything I own,and live on the street.
Advocates of “autism pride” are unwilling to address the needs and issues that lower functioning autistics,and those with complicated medical histories,in addition to autism face every day.They have an unrealistic view of autism,and view all autism through the prism of Asperger’s. They cannot understand how any autistic would not be able to function as well as they can.It all goes back to the innate lack of empathy that “aspies”,in general,have.
These are the people that dominate the discussion about autism.Those of us with moderate to low functioning autism have no real voice,other than this blog,and Harold’s blog,and nowhere to turn for help,advice,and advocacy. Perhaps we ought to put our heads together and change this.
Yes,there is Autism Speaks,but they are geared towards early intervention,and diagnosis of young children.Everybody else is ignored.
Do you mean the A crossed with the V?
Last week I was actually at 2 meetings about autism and services and supports (with, yes, less use of the “treatment” word), and concerns about older children and adults were the main topic.
My family is in Hunterdon County. My sister lives at home, is in her 40s and works in that area through CEA. My son Nick was born at the Medical Center where this girl died, and my Dad died there a few years ago. My Uncle is a Police Officer in one of those townships there. My only option is to have Nick take care of Matt at some point.
I have even contemplated adopting an older teen so that I would find someone to care for Matt. We dont have the room for it though. Maybe someday that will be explored further.
I know that after my Dad died it was mentioned to put my sister in one of these residences. Since I am not on speaking terms and my Brothers number no longer works I am in the dark, and my brother is listed as my beneficiary. Maybe I should place a notice in Hunterdon County Democrat to find him.
Regarding the story – it is very sad, was the place/home shut down?
Roger
Thank your for your comments. In addition to not representing the views of persons with Autism I do not believe that “Laurentius-Rex”, Michelle Dawson. Amanda Baggs etc represent the views of all persons with Aspergers.
Our provincial autism society was fortunate to have the involvement, as a director, of a gentleman with Aspergers for several years. He was very supportive of and involved with our efforts to help autistic persons in NB. He subsequently testified before the Canadian Senate on autism issues. He is a very positive individual who never displayed the animosity shown in LR’s diatribe. His name is Jason Oldford and he is highly respected by parents of autistic children here in NB.
On my blog site is a self posted article by another person from NB with Aspergers, Bruno Hache. Bruno tells his own story in that article and he is also on Facebook. He is another person with Aspergers who wants to actually work with and help autistic children as he himself was helped and describes.
Knowing people like Jason and Bruno first hand I am under no illusion that people like Laurentius with his hate issues is representative of or speaks for other persons with Aspergers let alone those like my son who suffer from the deficits of Autistic Disorder.
I commend you for speaking out and wish you “the very best” as we say here in the Maritime provinces of Canada.
I agree with Mr Doherty that the only place for autistics in Canada is to agree with and obey autism advocates. Those of us who fail to agree and obey are ostracized, are considered reprehensible, are certain to be misrepresented (as Mr Doherty so beautifully demonstrates in his public writing), and are likely to be defamed.
In Mr Doherty’s world, autistics have only one role: to be subservient to the needs and goals of autism advocacy parents and other autism advocates.
In Mr Doherty’s world, we must ignore all those other parents (that would include my own parents, and numerous others) who believe that autistics deserve better. We must also ignore the hard work of groups like People First, which consist of developmentally disabled persons, and which have been successful in opposing the wishes of some parents of developmentally disabled individuals.
I did my best to embrace and promote autism advocacy, for a decade or so. Unfortunately, autism advocacy put me in danger, and destroyed my career.
So while I had been enormously popular with autism advocates (because I was properly obedient and subservient, and a fine example of how scary and appalling ABA-deprived autistics turn out) I did not end up having a lot of choice.
Indeed, in order to try to improve my very bad situation, I once made the error of asking Mr Doherty, a lawyer, for assistance in his capacity as autism society leader. He refused. This helped me learn about leading autism advocates and how they respond to autistics in difficulty.
Mr Oldford, who has numerous university degrees, has supported the exclusion of autistics from the most important autism conference ever held in Canada. The parents of autistic children who, according to Mr Doherty, highly respect Mr Oldford took the position that Mr Oldford should be excluded from this conference. And apparently Mr Oldford agreed–not only for himself but on behalf of all autistics in Canada.
Mr Oldford has supported the use of aversive procedures, and he has supported the writing off of most autistics in Canada (those of us who haven’t received ABA-based interventions starting early in life). Mr Doherty clearly regards this as “positive” but others may differ.
Many autistics worked together to get autistics invited to testify in the Canadian senate, after we were deliberately excluded (autism advocacy parents were welcome) in autism-related hearings from 2003 until 2005. Mr Oldford was not among us. He did profit from our hard work, when he and other autism advocacy autistics were invited to testify in 2006.
My diagnosis isn’t Asperger’s, and I have not claimed to represent the views of anyone else, unless other people have expressed their wish that I represent them. However, Mr Doherty is clearly claiming to know and represent all parents of autistic children in New Brunswick (and perhaps elsewhere), as well as the best interests of all autistic children.
Harold you may indeed be the very devil to some (the word derives from “adversary”) but I do not hate you any more than I hate Michelle, I just differ from both your opinions, and the fact that I do differ and criticise Michelle should indicate to you that I agree that there is not a monolithic or monoglot “autism” to be represented under a “one party” dictatorship.
As for Roger, it’s straw man time again, isn’t it? You were not with me, when I needed maximum assistance a fortnight ago after being burned out of my home, when I was quite unable to speak at all.
How many times do I have to say to people who accuse me of only representing or pretending to represent a particular picture of high funtioning autism do I have to say, that the “aspergian supremacists” are my enemies too. I seem to have a lot of enemies, or adversaries, but then that is what you get for speaking up for truth and justice, and that truth and justice is what I want to see, not just for autistics either.
Take that bloody beam out of your eye Roger, you’ll see better without it.
How many times too do I have to say that this blog world is only a side show on the real activism, which you will not ever see.
What I represent is what I represent, at least I do not misrepresent like Harold Doherty.
My views are not those as misrepresented, once again, by Michelle Dawson.
Ms Dawson did contact me while I was president of the Autism Society New Brunswick. She asked if I would provide her a copy of a legal opinion that I was not authorized to, and therefore did not, release to her.
What is interesting is that Ms Dawson did not ask any questions about the conditions of autistic persons in New Brunswick, a province in which she does not reside, during our two conversations. She made no mention whatsoever of autistic persons in our province. She sought only a document for use in her continued effort to ensure that autistic children, including those in New Brunswick, do not receive ABA intervention. She asked no questions and made no comments to indicate that she truly cared about any autistic persons in our province.
What is also interesting given her past claims that “autistics” are excluded from Autism Societies in Canada is that she did not ask whether that was the case with the Autism Society New Brunswick. Jason Oldford, who Ms Dawson maligns with her nonsensical, angry rhetoric, is a gentleman with Aspergers. He was a member of our Board of Directors, an intelligent, well organized gentleman whose knowledge and organizational abilities were of great value to the ASNB.
Ms Dawson attacks anyone who disagrees with her opinions whether they be parents, professionals, researchers, journalists or persons with Aspergers who do not follow her script. Her “autism advocacy” consists of attacking parents seeking ABA intervention for our children, not for her, but for our children. She has maligned many fine people just as she has with Jason Oldford in her commentary here.
My advocacy has been on behalf of my son first and foremost. But I have been involved with other parents in obtaining the delivery of effective evidence based interventions for preschool autistic children, and for autistic children in our schools in NB.
I have helped reverse a decision to terminate a pediatric tertiary care program at the Stan Cassidy Rehabilitation Center in Fredericton. This program works with autistic children with complex and often dangerous self injurious behaviors. I have provided pro bono, “free”, legal services to youths with Aspergers in trouble with the justice system, and I am currently working to help develop a decent residential care system for autistic youths and adults.That is the autism advocacy that Ms Dawson hates with such passion.
As only one of the many people working to actually help autistic children and adults that Ms Dawson has so vehemently attacked I wear her hostility as a badge of honor.
@Bonnie Sayers,
The residence where the woman and the two other women lived has been closed. One of Charlie’s former instructors went to work at a large day center in Hunterdon county—-she was getting a degree in social work. I wonder why no guardian was appointed after O’Leary’s father’s death?
I was directed to Mr Doherty by Autism Society Canada, who told me that Mr Doherty was President of New Brunswick’s autism society. At the time, I had no way of finding out one way or another.
The legal document I was asking for, which was written by a member (judge) of the Canadian Human Rights Tribunal, was not in any way private, and was available in at least two ways. But I had no access to the internet (or to any computer) at the time, so I did not find this out until much later.
The document was available online (through Peter Zwack’s website) and it was available through the court challenges program which funded it.
And I was seeking help because of the Tribunal case, which involves the most basic human rights of autistics.
Mr Doherty apparently opposes any effort by autistics to try to have the basic human rights that he takes for granted, and without which he could not proceed safely in society, much less have a good outcome.
I did not know at the time that Mr Doherty promotes the same view as acted on by my employer in the Tribunal case, which is that autistics are just naturally violent and dangerous to others.
There’s no evidence (Mr Doherty provides none) that I “attack” anyone or am “hostile,” though I agree that Mr Doherty sees anyone who is not subserviently in accord with his views as appalling and reprehensible.
I write about the public statements and actions of others, when these statements and actions impinge on the lives of autistics. I provide sources and references, so that any information I can provide can be verified. I have been extensively defamed by autism advocates, and even in this case, I have responded politely and minimally. This is all publicly documented.
Mr Doherty repeatedly spreads false information about what I’ve written and done, and assigns to me actions and mental states that he has invented.
It’s interesting that he considers any effort to have autistics regarded as human beings with human rights, and as worthy of recognized standards of science and ethics, is an “attack” on ABA-based autism interventions.
My positions re ABA-based autism interventions have been publicly available, starting many years ago. My position in the Auton case, which Mr Doherty totally misrepresents (he hasn’t read it, or he has, and is just being dishonest), has been publicly available since 2004.
Mr Doherty does not want me to take Mr Oldford’s statements and actions seriously, as I have done. But in my view, failing to take Mr Oldford’s actions and statements seriously, as I would the statements and actions of any person seeking to influence the future of all autistics in Canada, would be to show him great disrespect. Instead, I respect Mr Oldford by looking at his actions and statements, and their consequences for autistics, and taking them seriously.
Mr Oldford’s public statements are available online (some of them in internet archives), and the rest of the information I provided can easily be verified through publicly-available information. Also, my writing about Autism Society Canada’s actions is publicly available, and there are numerous witnesses to autistics being excluded from ASC as well as the conference and hearings I refer to.
I recall trying to read what Ms.Dawson wrote on her website about her dealings with Autism Society Canada.I just went back to look at it,and it’s just as indecipherable as I recalled.I still don’t know exactly what her complaint is.I assume it has something to do with the ASC not having autistics on their board that are anti-cure,and pro neurodiversity.
My basic argument,is that this belief system is flawed to begin with,as it seems to base itself on a model of autism,that excludes the moderate to low functioning,and those who have coexisting medical problems.Most people who go around advocating neurodiversity,will never acknowledge that there is great suffering on the part of those at the lower end of the spectrum,or that these people are seriously disabled.
I see little,if anything,on Ms.Dawson’s website about advocating services for lower functioning autistics.
I may be mistaken,but the impression I get from reading Ms.Dawson’s writings,and others like her,is that it is innately wrong to do anything to help autistic children function better in the world at large.It is not ABA,as such,she objects to,but the very idea of any therapy at all.Is this correct ?
Like a lot of people,I was not aware aware of Lovass’ work on homosexuality in the 70s,and it does cast a shadow on his other work.But would she agree to another system of therapy,one that was designed with input from autistics ?Or does any therapy “rob the child of his innate autistic nature,which we should be celebrating”?
Why is it we don’t hear about neurodiversity from people with childhood onset bipolar,which my sister has,schizophrenia or fragile x ?
A lot of parents see autism in the context of their own child.They do not see it in the context of a bigger picture.I don’t think cochlear implants on deaf babies is wrong either.The benefits far outweigh any loss of inclusion in deaf culture.
I do think she has a point,in questioning the “epidemic” numbers groups like AS,and ASC are always touting.Others,including pro-cure people have said the same thing.I do think there is some inflating or fudging of the numbers to raise both money,and the levels of fear.But it is also possible there is some over-diagnosis going on here, especially at the lower end of the spectrum.Some of which may be due to over-zealous parents pushing for a diagnosis of Asperger’s in kids that a generation ago,would have been diagnosed as ADHD,or leaning disabled.some of this may be due to pressure on doctors to make this diagnosis,for whatever reason.Are children who lose their diagnosis no longer counted ?
When I was a kid,I could not have been diagnosed as autistic.In order to be autistic,a child had to be completely nonverbal.If a child was verbal,and showed all the other signs of classic autism,which I did,they were labeled with a patchwork of childhood schizophrenia,ADHD, and learning disabled.It was largely my immune disease,and the fact that I experienced bona fide autistic regression,after each of my frequent, acute infections,that made me seek a diagnosis of autism.I was diagnosed with autism,not Asperger’s.
I have only learned of People First in the past few days,but from what I can see looking around the web,they seem to work with mainstream groups,like ARC,and AS.I hope to get involved with them.
As far as real activism is concerned,I am more than willing to get involved,if you can tell me who I might get involved with.It has to be a group.I am neither well enough,or “high functioning” enough to do anything on my own.
I have read Ms Dawson’s rehash of her previous unfounded, and offensive, allegations about my views and the efforts of Mr Oldford. I stand by my comments.
In response to Roger’s comment, this is my position (I’ve repeated it many, many times):
1. Autistics are human beings with human rights.
2. Autistics derserve to benefit from and be protected by recognized standards of science and ethics.
3. Services for autistics, whatever those services may be, should be asked for accurately, ethically and respectfully.
That’s all. I could add that autistics should receive the assistance, accommodation, acceptance and respect we need in order to succeed in society as autistic people. But that’s really included in the three points above. And autism advcocates strongly oppose all of this and claim it is very bad for autistics.
For example, in the Auton trial decision, supported by all autism advocates, it was held to be wrong to provide support (assistance, accommodation, etc.) to autistics. This was said to be just like providing support to people with AIDS when a treatment that promises to cure half of them is available.
So it’s autism advocates who take the position that it’s wrong to help autistics.
In my view, all children and pretty much all adults need a lot of assistance and services. There is nowhere in my writing where I state that any people at all (autistic or otherwise) should not receive assistance, education, etc. At the Supreme Court of Canada, in contrast with all the autism advocates on both sides, I argued that it was in violation of autistics’ human rights to deny us any assistance, accommodation, etc., that we may require.
My criticism of ASC was that they excluded autistics (in various ways), and that they widely dissminated false information about autism. In many ways, ASC continues to do both. I don’t see how this helps autistics.
Neurodiversity is part of the general idea that disabled people should have human rights. I consider People First groups, and the Canadian Down Syndrome Society, to be excellent examples of what neurodiversity means. Autism advocates oppose this too, and claim that human rights are bad for autistic people.
In response to Mr Doherty, everything I’ve written above can be verified.
This is not the case with what Mr Doherty has written about me, about others, and about numerous autism-related issues.
Mr Doherty appears to find accurate reporting about the statements and actions of autism advocates (himself included) to be “offensive.” But this is at the same level of intellectual honesty as his calling accurate reporting from primary sources an “anti-ABA diatribe” and other similar outbursts.
“Why is it we don’t hear about neurodiversity from people with childhood onset bipolar,which my sister has,schizophrenia or fragile x ?”
I don’t know. There are suprisingly few about (mostly because the larger ones have had a decade or so headstart to influence the social and political changes that they have) but they’re not that hard to find.
Are you sure you’re using the right search terms? Neurodiversity (the term) is relatively new, so some organisations might not use it, but the idea has been gaining a foothold for some time now. At least in the UK, we have several NSF’s and other white papers based around the idea.
I guess what really rubs me the wrong way is all of this fake superiority you see at places like Aspies For Freedom,autistics.org,and to a lesser extent Wrong Planet.I don’t get it,and if I were a “neurotypical” reading that stuff I would find it offensive.Not to mention the fact they encourage activity like self-diagnosis.
There are a number of other blogs that promote this garbage.Like it or not,the internet is the first place people go nowadays to learn about anything.Including activist movements,how to join them,and where they stand.
If groups like AS,and ACS don’t serve your purpose,then start your own organization.Just make sure you are inclusive,and don’t focus on children,or don’t spend too much time focusing on a militant anti-cure stance.You also might consider that those with moderate to low functioning autism might WANT to work towards a cure.
Curing autism,or any other disorder does NOT equal to eugenics or extermination.No matter what the occasional nutjob here and there says. There are many people that will think if you are anti cure,you are anti treatment.An impression I have gotten from reading a lot of other people’s web sites and blogs.
Part of the trouble is,the developmentally disabled are not organized enough into a large (inter)national body,or movement.The People First movement seems to be a step in the right direction,but you have to really do some digging to learn about them.I had to use Google to find the one in my state.They are quite small,and never promote themselves.I don’t know,if this is the case elsewhere.
“1. Autistics are human beings with human rights.
2. Autistics derserve to benefit from and be protected by recognized standards of science and ethics.
3. Services for autistics, whatever those services may be, should be asked for accurately, ethically and respectfully.”
Exactly. And – from both personal experience (as an autistic adult) and practice (as an educational psychologist) – I am aware that those values are not held up in the way practitioners in various systems do their jobs. And this seems to be a universal trend.
“My criticism of ASC was that they excluded autistics (in various ways), and that they widely dissminated false information about autism. In many ways, ASC continues to do both. I don’t see how this helps autistics.”
Again, we see an abandonment of the values listed above. Even the Finnish Empowerment Project (which I was actively involved in) allowed greater participation in the decision-making process than the ASC’s ‘inclusion’ sham, and the Finnish haven’t quite got to where the UK, the US and Canada … indeed to where the rest of the western world is on respecting human rights.
Says a lot about ASC, when a country whose system is set up to model the very system that contributed to the fall of the Soviet Union is more progressive than they are!
Roger you make a great mistake and misjudgement if you associate my support for the concept of neurodiversity with forums like wrong planet and AFF, neither of which I post on, and some of whose wrong headed superiority myths I have spoken out against in public.
I understand where it comes from as a reaction to the negativity that we have all had to endure at some time, but my concepct of neurodiversity is inclusive and not dependent on any notional level of funtion or dependencey.
As for not hearing the concept amongst schizophrenics for instance, well there is the psychiatric survivors movement, which includes people who wish to revise the negativity of conventional pschiatric speak too, people diagnosed with Sz who wish to publicly identify in there own terms as “voice hearers” and there are cross iterations between neurodiverse movements, psychiatric survivors and the disability movement as a whole.
Autism Canada is a somewhat insupportable organisation in there exclusion of autistics from meaningful dialogue, If the worlds first autism society, founded by parents can include me on it’s board as a fully funtional member and not just a token or pet, then any autism society can include us in meaningful ways, and yeah not just us so called high funtioners, but autistic users of there services at every level of the organisation.
Thing is I do not think Michelle has helped too much in fostering that attitude, because she has been too oppositional and does not have a middle ground for dialogue with the enemy.
Although I can be rather liberal with designating who the enemy is, at least I am prepared to parley with them.
The John Bests, and the Harold Doherty’s of this world all have stuck minds. One should ignore them and go to the people one can still influence outside of the punch and judy show, that the autism hub sometimes presents.
Mr Andrews
The Autism Society Canada does not exclude autistics. That claim is false.
Ms Dawson
Your argument at the Supreme Court of Canada, where you appeared as an intervenor, was summarized by the SCC was an argument “against ABA therapy”:
“Indeed one of the interveners in this
appeal, herself an autistic person, argues against the therapy.”
You argued against a therapy which was described by the SCC “at the time of trial”:
“by the time of the trial the evidence was
sufficient to convince the trial judge that it was “medically necessary” (para. 102).
At the time of trial in 2000, ABA/IBI funding for autistic children was only beginning to be recognized as desirable and was far from universal. Alberta established funding for it in 1999, as did Ontario. Prince Edward Island was
providing up to 20 hours of ABA/IBI per week at the time of trial, and Newfoundland and Manitoba had instituted pilot projects in 1999. 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).”
You have also appeared before the Canadian Senate and in numerous media interviews both as “an autistic person” and now as a researcher to argue against ABA for autistic children.
You have consistently argued against the provision of the most evidence supported effective intervention for autistic children OTHER PEOPLE’s children.
That is your autism advocacy advocacy record.
Autism Society Canada (along with NAAR and the CIHR, and Health Canada) excluded autistics from the major autism conference ever held in Canada. Only when their funding was called into question (ASC was violating the terms of their funding) did ASC include one hand-picked autistic on their large board of directors. Autistics had no say in this.
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.
1. Alleged Misrepresentation of Michelle Dawson’s SCC position:
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
In response to Mr Doherty, I take a position (as I did in Auton and in the Senate) against autistics being dehumanized and written off.
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.
While it has not changed my position on autism,as something that should or should not be “cured”,this discussion thread has done a great deal to open my eyes,and understand where neurodiversity is coming from.I still do not agree with a lot of what I read,but at least I understand it now.Blogs like Abnormaldiversity have been especially helpful in this.
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.
——————————————————
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.
I am unable to fully discern the meaning of:
“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?
Asked for by anyone who is attempting to change public policy, the law, standards of science and ethics, etc., in a way that affects autistics as a group.
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.
I’ve spent the last couple of days thinking about what happened to Ms. O’Leary and is this really that exceptional for those with developmental disability–given that I have read about many cases of those with developmental disabilities suffering abuse or neglect? The conundrum is what needs to be changed in a system dependent on $$, and oversight being in reality what it says it is on paper (I looked at what Hunterdon country DD says that its case work provides).
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.
One of the article cited in the original post also noted another terrible case, involving the starvation of 4 adopted children by the couple who adopted them. There was a lot (a lot) of criticism raised about the state’s Division of Youth and Family Services (DYFS)—–it took that, and some other really awful cases, to prompt (finally) a thorough review of DYFS. Looks like something similar needs to be in store for the DDD.
Hey Hrothgar, I don’t have an uncomplicated diagnosis, mine is not simple Asperger’s and I have physical impairments too, so what the heck, that is the experience of being human and living beyond ones forties, at least I live, that was not the majority experience of humankind much before the 20th century.
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 reading a great big bunch of commenters misunderstanding each other. Michelle Dawson repeatedly says her problem with the push for ABA is that people view those not given ABA early as a lost cause. It seems to me that hers and Harold’s causes are the same, but they disagree about how to go about doing it. And laurentius rex’s different way of thinking/writing does not make it unintelligible. Especially when one considers that it is spattered with Welsh, which is, well, Not English. IE If we don’t speak it, we can’t rate whether or not it’s intelligible…
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?!?’)