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Via Autistic Hoya: Judge Rotenberg Center Survivor’s Letter

10 Feb

The Judge Rotenberg Center (JRC) is a school for autistic students which incorporates aversives into the program for some of their students. These aversives are electric shocks delivered via remote-control to packs the students wear 24/7.

The JRC has been the focus of a great deal of criticism. To put it mildly. JRC has repeatedly described the shocks in relatively mild terms. Autistic Hoya (whose blog I highly recommend) has an article which includes a letter from a JRC survivor. I do not have permission from the author to copy the letter here, so I will send you to her site. With the warning that this is not an easy letter to read:

Judge Rotenberg Center Survivor’s Letter

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By Matt Carey

The Next Vaccine-Autism Newsmaker…5 years later

6 Feb

Years back, much focus in online autism parent community discussions focused on the Omnibus Autism Proceeding (OAP). This was the large “vaccine court” proceeding to explore if people could be compensated for autism as a vaccine injury. Those hearings were held in 2008, and the decisions went against the families.

A year ago I wrote (The Omnibus Autism Proceeding: effectively over), and while, yes, as an “Omnibus” it is effectively over, there is still activity for those who filed claims and were included in the Omnibus Autism Proceeding. Statistics as of today show there were 5,635 claims included in the Omnibus, and 4,564 have been dismissed. 2 claimants have been compensated, with the caveat given that “**HHS has never concluded in any case that autism was caused by vaccination.” This leaves 1,069 cases still pending. A relatively small fraction of the original Omnibus, but a large number nonetheless.

Another way to look at this is the Omnibus proceedings are over, the docket hasn’t been updated for quite some time but there are still individual cases to be decided. Including one case that was rather prominent in the Omnibus: that of A. Krakow. He was intended to be one of the test cases for the thimerosal but was pulled out to pursue another argument: that metabolic dysfunction is involved. David Kirby referred to him as “The Next Vaccine-Autism Newsmaker”, following the supposed game-changer of Hannah Poling.

That was in 2008. As it’s been nearly 5 years, I checked the status of the case. It turns out the first hearing was held in December (a hearing on fact) and a second hearing is set for expert witnesses to testify in April of this year. One way to explore the arguments the family may be taking is to review the experts that are testifying. For example, the family has chosen Richard Deth as an expert. His work has not focused on mitochondria. On the other hand, Yuval Shafir is also listed as an expert and has listed many articles on mitochondria with his report. Richard Frye’s CV was submitted (he also has some work on mitochondria and autism), but I don’t see that an expert report from him has been submitted.

Other experts date from 2008 (from when he was going to be an Omnibus test case) include: Elizabeth A. Mumper, Robert S. Rust, Richard Deth and Sander Greenland.

(edit to add, I see a report in the docket from Marcel Kinsbourne in 2010).

So, is this going ahead as a “mitochondrial autism” case? The “Next Hannah Poling” as David Kirby claimed in Spectrum Magazine? Well, even Hannah Poling wasn’t the game-changer some people predicted. Probably the most we can say is that is 10 years old, with a docket 16 pages long, will finally be heard.

edit to add: For the curious, here is the docket.
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By Matt Carey

Is Slate misrepresenting the Neurodiversity movement?

22 Jan

In a word, yes. In, Is the Neurodiversity Movement Misrepresenting Autism?, Slate.com author and autism parent Amy Lutz argues that the neurodiversity movement is essentially dividing the autism community between “high-functioning” adults and parents of “low-functioning” children. Shannon Rosa clarifies this point for Ms. Lutz in Why Did Amy S.F. Lutz Attack the Neurodiversity Movement? That is a more full discussion of the article than here, and I encourage readers to read Ms. Rosa’s account.

I’ll consider two segments of Ms. Lutz’ article. First, what is essentially her conclusion:

What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed.

The author doesn’t see neurodiversity as a “real” rights movement because, in her view, neurodiversity implies that “we are all the same, with ‘intact minds’ that just need to be accessed.”

To anyone who has spent any time seriously considering the neurodiversity movement, the above statement is an obvious misconception. A straw-man argument, if you will. Just start with the name: neurodiversity. How one gets from a diversity movement to “we are all the same” is beyond me. Even after reading the article. Yes, I see the argument the author tried to make. I also know that her argument is full of misconceptions and, frankly, attacks.

I am more moved by ideas than movements, so I don’t use the term neurodiversity much. However, I can put my view simply: you and I think differently, but we are equals. You can derive a lot from that, but it’s one way of seeing “neurodiversity”.

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world.

Let’s take this in two pieces. First, her “overwhelming” evidence is basically arguments that some of the more known names of significantly challenged adult autistics are not what they present themselves to be. An easy argument to make if you misrepresent how these adults have represented themselves. Claiming that Amanda Baggs presents herself as typical of autistic development, for example, is plainly false. It is a rehash of old, tired attacks.

Now to the more important part the supposed division “between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world”.

First off, didn’t she say in the quote above that Neurodiversity proponents see people as being “all the same” and that if they were a “real” diversity movement, they would acknowledge that there are differences? But in this quote neurodiversity proponents believe autism is a “different” way of thinking.

Leaving aside the logical inconsistencies of the article, this line is an old false-dichotomy argument. Who says there is a division between disability and difference? A disability is a difference. Another way to say it is that autism is a disability and a difference. It’s redundant in my opinion, but sometimes redundancy is needed. Would I say “not worse”? Yes. Does that mean I deny the disability? That I don’t acknowledge the challenges posed by autism? That I don’t believe life is more difficult for autistics than non-autistics? No, no and no.

As I read it, Ms. Lutz’ comment implicitly states that disability is worse than not being disabled. From one online dictionary, I get this as the number one definition for “worse”: of more inferior quality, value, or condition. I have no reservations saying that my child has huge challenges, many of which will not be overcome even with great effort. Is any part of my child of “inferior quality, value, or condition”? No. I see different, not less. Not inferior. In need of great support, yes. But as an equal, not out of pity and without taking away rights and dignity.

Ms. Lutz finishes her article by positing that neurodiversity propenents act out of some level of ignorance, fed by what she asserts is misinformation about what autism really is. I believe Ms. Lutz has some ignorance to overcome on her own. She closes with a statement about “kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors” and how “any portrayal of autism that glosses over their profound disability closes the door on them all over again.” I would say that first we need to acknowledge that (a) this is not confined to children and (b) autism and dangerous behaviors can come without intellectual disability, and that segment of the population should not be glossed over either. But that aside, consider the basic question of how do we move forward with a very diverse population and see that all are served appropriately? The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population. But the way forward is not to claim some schism between “high-functioning” autistics and parents of those with different challenges. My experience is that once a person sees a strong civil rights aspect to autism–and disability in general–one sees the need to work for all in the population.

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By Matt Carey

Comment on National prevalence rates of bully victimization among students with disabilities in the United States

10 Jan

Bullying is a major issue. This is especially true among the disabled. A recent study focused on bullying within the school aged autistic population, and I discussed that at the Autism Science Foundation blog. Another study has just come out recently in School Psychology Quarterly, National prevalence rates of bully victimization among students with disabilities in the United States. I hope to obtain the full paper and review the methods, but for now here is the abstract:

This study examined the prevalence rates of bully victimization and risk for repeated victimization among students with disabilities using the Special Education Elementary Longitudinal Study and the National Longitudinal Transition Study-2 longitudinal datasets. Results revealed that a prevalence rate ranging from 24.5% in elementary school to 34.1% in middle school. This is one to one and a half times the national average for students without disabilities. The rate of bully victimization was highest for students with emotional disturbance across school levels. Findings from this study also indicated that students with disabilities who were bullied once were at high risk of being bullied repeatedly. Elementary and middle school students with autism and high school students with orthopedic impairments were at the greatest risk of experiencing repeated victimization. Implications of the findings are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)

Students with disabilities are victims of bullying as much as 1.5 times more often than their non-disabled peers. The authors also found Elementary and middle school students with autism and high school students with orthopedic impairments were at the greatest risk of experiencing repeated victimization.

The fact that the disabled are victims of bullying at a high rate is not surprising. The fact that this includes autistics is not surprising. It is valuable, though, to get this documented. It does beg the question of what will happen to change this?

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By Matt Carey

San Diego mother pleads guilty in the drowning murder of her autistic son

29 Dec

Channel 10 news in San Diego reports Patricia Corby, woman accused in autistic son’s death, pleads guilty to murder charges, Corby faces sentence of 15 years to life.

The story begins

SAN DIEGO – A woman who drowned her 4-year-old autistic son in a bathtub, then drove his lifeless body to a police substation where she admitted the crime, pleaded guilty Thursday to second-degree murder.

Patricia Corby, 37, sobbed as she admitted killing her son, Daniel, last March 31.

The mother reportedly drowned her 4 year old son, attempted to drown herself and then drove to the police department to turn herself in.

As an aside: such events as these bother me a great deal. I have a great deal of difficulty discussing these stories and I resort to a rather clinical approach in my writing.

In a previous story it was reported that when she turned herself in:

…she told police that the boy was autistic and that she didn’t believe he would have a life or a future without her, so she decided to kill him, the prosecutor said.

Multiple sources are reporting that the the family had spent a large sum on therapy, implying that financial stress played into the decision to murder her son. This sort of inference is often a source of much controversy for, among other reasons, playing into the “autistic as burden” discussion.  Also statements about the family’s debt are taken by some as an attempt to partially justify the murder.

Ironically, in most murder cases a financial incentive is seen as adding guilt to the crime. However, when a parent murders a disabled child, the financial incentive seems to be used to reduce guilt.

Not mentioned is the discussion of finances is that the murder happened just a few months before California law changed making autism therapies much easier to obtain through insurance. The family was reported to have a history of employment problems, but the father was employed at the time of the murder and may have had medical benefits.

Comments in online stories range from “I would have taken the child in” to “don’t judge the mother unless you have walked in her shoes” to comments that seem to emanate from a modern-day Ebeneezer Scrooge.

As an aside, it is my personal opinion that the “you haven’t walked in his/her shoes” discussion point is beyond meaningless. Consider a term that is often discussed in the context of autism: empathy.

Empathy is the capacity to recognize feelings that are being experienced by another sentient or fictional being. Someone may need to have a certain amount of empathy before they are able to feel compassion.

Somehow we are not supposed to be capable of empathy where it applies to being critical of the mother’s actions, but we are supposed to be capable of empathy in considering offering the mother sympathy.

Another term that comes up often in autism discussions is “balance”. As in “that news story needed to give both sides to show ‘balance’ “. Usually this is in regards to some totally unscientific or disproven idea about autism. News stories about parents murdering their autistic children almost never give balance in regards to presenting any one of  the hundreds of thousands of stories where parents don’t murder their autistic children. Stories of how it is difficult, but does not warrant murder.  How the norm for those of us who have “walked in her shoes” is to keep walking, not to commit murder.  There is no balance in the form of autistic voices, except in the comments to no online stories. Comments that are often met with a “you haven’t walked in her shoes” reply.

Some question why so many parents actively shun the “pity politics” of autism, where real difficulties and challenges for our children and ourselves are colored by language of hopelessness and despair. Among the many excellent reasons I would include  the desire to not encourage the sort of despair that Patricia Corby felt.

Discussions of these types of events are very difficult for many reasons. Not the least of which is being respectful to the family. I wish the father and the family well in this difficult time and apologize for intruding in this tragedy.

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By Matt Carey

San Diego Family accuses caregivers of abuse

28 Dec

A family of an autistic young adult have accused caregivers of abuse after secretly recording video. In apparently pretrial hearings, the mother explains what she saw. The defense causes her of withholding information.

Preliminary hearing Thursday for 2 men accused of abusing autistic man

The video is, as you might imagine, painful to watch. So far the embed code doesn’t work, which might be for the best.

San Diego, California News Station – KFMB Channel 8 – cbs8.com

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By Matt Carey

Calif. threatens to shut down Sonoma disability center amid patient abuse

17 Dec

California Watch has a series of stories recently discussing abuses and California’s developmental centers and failures by their in in-house law enforcement to properly investigate and prosecute those at fault.  In a news story out this past week, Sacramento’s TV channel 10 has a story:

Calif. threatens to shut down Sonoma disability center amid patient abuse

Here’s the introduction:

The state’s largest board-and-care center for the severely disabled lost its primary license to operate today, after repeatedly exposing patients to abuse and shoddy medical care.

State regulators cited the Sonoma Developmental Center, which houses more than 500 patients, for dozens of cases where patients were put at risk of injury or death. In issuing the citations, the state moved to shut down a major portion of the century-old institution.

The Sonoma Developmental Center is an institution for the developmentally disabled, mostly adults who are considered to have needs too great to be served in community placements. These would also include those most at risk of abuse.

The California Department of Developmental Services has an in-house police force. In the case of the Sonoma Developmental Center, multiple accusations of sexual abuse have been levied, but the CDDS’ police did not pursue those cases–to the point of failing to even take critical evidence (rape kits) on the victims. Control over the in=house police in Sonoma has been handed over to someone brought in from outside the service:

The department announced it was putting Frank Parrish, assistant chief of the California Highway Patrol, temporarily in charge of the Office of Protective Services’ unit at the Sonoma center. The highway patrol “is in the process of evaluating the issues to ensure the delivery of appropriate services,” the department said in a release.

Another recent story by the California Watch describes in more detail some of the problems at Sonoma: Police ignored, mishandled sex assaults reported by disabled. It is just mind boggling what appears to be happening based on the reports there.

Putting a couple different points together one ends up with this sad paradox: an individual with intellectual disability is considered incapable of giving consent for sex. However, the complaints must come from the individual and if the level of intellectual disability is too high, no one will accept their accusation. Unless someone is caught by evidence, nothing will happen. And the in-house police force isn’t taking evidence.

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By Matt Carey

Politics win over the rights of the disabled: The CRPD

8 Dec

The American Senate voted for the Convention on theRights of Persons with Disabilities, CRPD, just not by enough of a margin to pass it. The vote was 61 to 34 with 3 abstentions.

Rick Santorum was a force against the Convention. He is quoted in a number of places as stating:

“If it weren’t for you, the U.S. Senate wouldn’t have defeated the United Nations Convention on the Rights of Persons with Disabilities. Your petition signatures (over 20,000!), phone calls, emails and tweets about CRPD’s flaws made the difference.”

When I read such a statement, I am saddened that I didn’t do more to get out the word to voice support. Not that this site would have made the difference, but I wish I had done more.

The Convention was rejected by groups who felt the U.S. should not cede sovereignty over these decisions. A major point is this: the U.S. doesn’t really respond to the U.N. anyway. Sorry to put it so bluntly, but the major force behind enforcing the will of the U.N. is the U.S.. Also, if we as a people are already following the rules set forth in the Convention, we are not going to cede sovereignty to anyone, right? But, still, the specter of “the UN will tell the US how to treat their disabled children” was raised.

On CNN’s Anderson Cooper show, this point was discussed, including this rather strong statement to the contrary by John Kerry:

SEN. JOHN KERRY (D), MASSACHUSETTS: Well, I have great respect for both Rick and his wife, Karen, and their daughter and their family. He’s a strong family man. But he either simply hasn’t read the treaty or doesn’t understand it or he was just not factual in what he said, because the United Nations has absolutely zero, zero, I mean, zero ability to order or to tell or to even — I mean, they can suggest, but they have no legal capacity to tell the United States to do anything under this treaty. Nothing.

How about the other side of the discussion? In what areas might we as a people not agree with what is in the Convention? Health care. You read that correctly, health care. The country that spends the most on health care in the world is worried that the UN would impose their rule on us in health care of the disabled.

RICK SANTORUM (R), FORMER U.S. SENATOR: This is a direct assault on us and our family to hand over to the state the ability to make medical determinations and see what is in the best interest of the child and not look at the wonderful gift that every child is.

I see a familiar theme here. The disabled are all children. Moving on, one might ask, “in what way would health care be an issue?” Here is the section of the CRPD on health care:

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a.Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b.Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c.Provide these health services as close as possible to people’s own communities, including in rural areas;
d.Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e.Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f.Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

In case you are wondering what in that raised concerns, it’s this phrase: “including in the area of sexual and reproductive health”. Yes. The U.S. didn’t ratify the Convention because some groups are concerned that it includes right to birth control, including abortions.

But that’s not all. By putting “population-based public health programmes” adjacent to that statement, the door was opened for this sort of fear mongering:

Bradley Mattes, president of the International Right to Life Federation, stated, “This is a misleading measure in that it does nothing to protect life. It is disguised as a way to ‘help’ the disabled. Instead it intentionally sacrifices the most vulnerable – the disabled and the unborn – all in the name of population control.”

Yes, “population based public health programs” become “population control”. In case you are wondering, here are a few definitions of “population-based” in regards to health care, including:

Population-based care involves a new way of seeing the masses of individuals seeking health care. It is a way of looking at patients not just as individuals but as members of groups with shared health care needs. This approach does not detract from individuality but rather adds another dimension, as individuals benefit from the guidelines developed for the populations to which they belong.

No, it is not population control. “Population-based care” isn’t a scary thing.

There is another area where the way the U.S. acts today might be called into question on the issue of health care: “Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” There have been a few high profile cases in recent times where individuals were denied transplants due to disability.

In the end, this is a sad day for the U.S.. We have shown the world that we would rather not open ourselves up to criticism. Yes, criticism. That’s the most that could come out of the CRPD from members of the U.N., criticism. Which we would veto. We would rather not face criticism than provide leadership in the world and give ourselves leverage to help enact real change in other countries. If another country abuses its disabled citizens, what are we going to say? “Hey, you aren’t respecting the rights of your disabled citizens.” Yeah. That will carry a lot of weight.

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By Matt Carey

Senate Rejects UN Disability Treaty

4 Dec

Disability Scoop is reporting: Senate Rejects UN Disability Treaty. The Convention on the Rights of Persons with Disabilities (CRPD) has been rejected:

Despite strong support from disability advocacy groups, Republican opposition led the U.S. Senate to reject an international disability rights treaty on Tuesday.

In a vote that fell almost entirely along party lines, supporters were unable to secure the two-thirds majority of senators needed to ratify the United Nations Convention on the Rights of Persons with Disabilities.

More at Disability Scoop.

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By Matt Carey

California Police Ignored, Mishandled Sex Assaults Reported by Disabled

30 Nov

This story from The Daily Beast: California Police Ignored, Mishandled Sex Assaults Reported by Disabled. Obviously potentially a trigger.

We’ve discussed sexual assaults in group homes in California in the past few years. Police made some of those cases priorities. The Daily Beast story discusses cases where there is a lack of even basic OK investigation:

Patients at California’s board-and-care centers for the developmentally disabled have accused caretakers of molestation and rape 36 times during the past four years, but police assigned to protect them did not complete even the simplest tasks associated with investigating the alleged crimes, records and interviews show.

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