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Locking autistics in a filthy basement room can never be called “the least bad solution”

28 Jul

The Washington Post has a series of articles about a pair of twin autistic adults who were found locked in a basement room. Here are the first two:

Rockville, Md., couple charged with abusing twin 22-year-old autistic sons

and

Rockville autistic twins who were locked in room are moved

From that second article:

The autistic twins who spent nights locked inside a urine-stained room in their parents’ basement have been safely placed in another home under the oversight of social workers, Montgomery County authorities said Tuesday.

The young men, 22 years old, also have undergone medical checkups, which didn’t find signs of further abuse, police said.

Their parents — John and Janice Land — have each been charged with two counts of abuse of vulnerable adults and two counts of false imprisonment. It appears that the authorities’ case against them rests on the conditions that left the two men inside a filthy, dark room with only an old comforter to sleep on. Neither man can communicate verbally. The doors to the room were bolted from the outside, and the basement also was blocked in places by plywood, according to police accounts and fire inspection reports.

“This case is unacceptable,” said Laurie Reyes, a Montgomery police officier who works with autism families. “There are other measures that can be put in place.”

She said that the conditions for the twins were the worst she had ever heard of in the county.

“the worst she had ever heard of in the county”

Not “just” locked in the basement. Squalor. Filth. According to a later article, the house has been condemned.

This inspired the Post and writer Dan Morse to write another article: Coping with adult children’s autism, parents may face ‘least bad’ decisions

Mr. Morse, I appreciate what you are trying to do. We absolutely need better supports for our autistic adults. But framing this story around the actions of these parents is bad. Really bad. I am at a loss for words in describing just how bad.

I’ll pull one sentence out.

But John Land’s father — John Land III — has said the criminal allegations are overstated given the challenge the twins presented.

If you are going to write that, what about a loud rebuttal? How does being disabled make it non criminal to hold these twins in a squalid prison cell? I frankly think the criminal charges are understated, much as this rebuke is extremely understated.

This sort of abuse can never be the “least bad” choice. Not even close.

Please, find a way to write about the challenges faced–from the perspective of the autistics. Find a way to write about autistics as equals, humans who deserve support because we, the non disabled, should live up to our responsibility.

By Matt Carey

Andrew Wakefield, apparently he’s making films to convince you that doctors think vaccines cause autism and are covering it up.

28 May

It can be very interesting to hear what people say when they are in their home element. Ken Reibel showed this when he reported back from an AutismOne parent convention six years ago. More recently, we heard Jenny McCarthy accuse parents who don’t take her advice on alternative medicine of being victim moms who love the attention they get from having a disabled child. So much so that they won’t treat their children. So, with that in mind, I took the time to listen to a talk from this year’s AutismOne convention. The talk by Andrew Wakefield.

Andrew Wakefield, the doctor behind the MMR/autism scare of the 1990’s, spoke at the AutismOne parent convention last week. His talk at AutismOne was The Legacy of Vaccine Injury. It’s much of the same non-autism talk about vaccines one reads online. But one minute of the talk stood out for me. A minute where he describes why he is making films.

Yes, in case you weren’t aware, Mr. Wakefield has a new career as a film maker. He has a documentary on the death of an autistic young man, Alex Spourdalakis. Mr. Spourdalakis was brutally murdered by his mother and caregiver. Mr. Wakefield, as it turns out, had been “helping” the family and was filming their story. That film is finished. Mr. Wakefield tells us why he makes his films in his AutismOne talk. One might ask: is it to demonstrate the needs of autistics? The challenges parents of autistics face? The lack of supports for autistics?

No. It’s best to get it straight from him (although I admit the title of this article gives it away). With that in mind, here’s my best effort at transcribing what he says. For context: he’s speaking to an audience of autism parents at AutismOne, and he’s been talking about how surveys/studies show a sizable minority of the U.S. population believes that vaccines cause autism:

“And there is no mention in these studies of the uncertain or the undecided. There was another poll* that came out, I think from the University of Chicago, in fact. Where they asked the question: ‘Do you believe doctors think that vaccines cause autism and are covering it up?’ 20% of the respondents said yes. The important number is that 36% didn’t know. And it’s that 36% that I am targeting in the films that I am making. They are not for you. You already know. I’d be honored if you watched them but they are not for you. They are for the agnostic. And for that reason they must get out into the mainstream.”

For that reason they must get out into the mainstream

“That reason”: convincing the agnostic that doctors think that vaccines cause autism and they are covering it up. Alex Spourdalakis died a horrific death, and that can be used in this campaign, by inserting him into one of Mr. Wakefield’s films.

Go ahead and listen. It’s about 9 minutes in this video (for some reason the embed code isn’t working so you have to follow the link).

And some people wonder why I am critical of Mr. Wakefield. Yeah, I know that criticizing Mr. Wakefield plays directly into the persona he has created, where he has given everything for the children. But in this case the time as well as the criticism is well deserved.


By Matt Carey

*In case you are wondering: he appears to be referring to Medical Conspiracy Theories and Health Behaviors in the United States.

Autism Group Petitions CBS News: Take Down Dangerous Video

6 Sep

The Thinking Person’s Guide to Autism started a change.org petition: CBS News: Take down the video Behind the Tragedy: Mother Murders Autistic Son

The petition has over 1500 signatures as of today. Please read and consider signing. If you disagree with the way CBS portrayed the murder and the murderers of Alex Spourdalakis, please consider sending an email to CBS at cbsaudiencenews@cbs.com.

REDWOOD CITY, Calif. — Autistics and caregivers want CBS to remove a news video which frames autism as an excuse for the murder of a child.

The CBS News video, Behind the Tragedy: Mother Murders Autistic Son, frames autism as an excuse for the murder of a child, Alex Spourdalakis, by his mother & caregiver. CBS should not be promoting what The Autistic Self-Advocacy Network’s Ari Ne’eman described as “a dangerous ideology that preaches that people are better off dead than disabled.”

Even though Mr. Ne’eman and his quote were included at the end of the video, the bulk of the video tries to justify the unjustifiable — Alex’s murder — and curries sympathy for his killers. Specifically, CBS reporter Sharyl Attkisson says, “His murder might be just another unexplained tragedy, if it were not for a documentary following his family in the months leading up to his death.” This is unacceptable.

The petition can be found at cbs-news-take-down-the-video-behind-the-tragedy-mother-murders-autistic-son-2

CBS News can be reached at cbsaudiencenews@cbs.com.

The Thinking Person’s Guide to Autism is a book, website, and Facebook community run by Shannon Des Roches Rosa, Jennifer Byde Myers, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities.


By Matt Carey

Whitewashing the brutal murder of Alex Spourdalakis

31 Aug

Alex Spourdalakis was a 14 year old autistic who was brutally murdered by his mother and another caregiver. Among those with extraordinary needs, Mr. Spourdalikis had extraordinary needs. Shortly before his spent a considerable amount of time in a hospital, reportedly restrained the whole time. So far the only real details from that time have come from his mother and caregiver who were the perpetrators of the murder. The family was offered help. When someone from the local Autism Society asked the mother what she needed “[Ms.] Spourdalakis said all she wanted was an attorney” and one was found for the family. Another news report states that “Department of Children and Family Services spokesperson says that Dorothy Spourdalakis was offered services, but she refused.” Mr. Spourdalakis’ case became well known, especially within the online autism communities. The family received the services of Andrew Wakefield, whose career has taken him into reality TV film making. Mr. Wakefield’s team helped to publicize the situation and followed the family to New York from Chicago as they sought help from Mr. Wakefield’s former colleague, the gastroenterologist Arthur Krigsman. It is not clear what treatment Krigsman prescribed. Sometime after this, the mother and caregiver began to conspire in a plan to murder Mr. Spourdalakis. When the carried out their plan, they poisoned Mr. Spourdalakis with sleeping pills. When this did not work quickly enough, the mother and caregiver stabbed him. Not once, not twice, but four times, including two stabs to the heart. When even this proved not fast enough, the mother and caregiver slit his wrist. Slit so deeply that reportedly his hand was nearly severed from his arm. When Mr. Spourdalakis finally passed, the mother and caregiver turned the knife on the family cat. After cleaning the knife, they returned it to it’s place in the kitchen. The mother and caregiver then took large doses of sleeping pills, the method they had just found to be ineffective in the murder of Mr. Spourdalakis. The father (who was divorced from the mother and living elsewhere) and an uncle tried to reach the mother that day and, finding that they could not reach her, came to the apartment. When the door was not answered, the uncle reportedly kicked it down. This action, in my view, indicates that the danger posed to the young Mr. Spourdalakis by his mother (who was reported to have started planning the murder a week in advance) was known to his extended family and they were monitoring the mother in an attempt to prevent harm.

As noted above, Andrew Wakefield inserted himself into the story. His joint venture with Polly Tommey, the Autism Media Channel, started collecting film of Mr. Spourdalakis and his mother during the hospital stay. Mr. Wakefield’s intent certainly wasn’t to document the final days of Mr. Spourdalakis. Most likely he was planning a vide similar to that for the trailer he prepared for his proposed reality Show “The Autism Team”. That video shows autistic children in meltdowns, being self-injurious. One specific child is flown from the U.K. to New York to see Arthur Krigsman (just as Mr. Spourdalakis was taken from Chicago to New York to see Krigsman). In the trailer, after visiting Krigsman the child was shown happy, playing, and the parents were shown grateful. As we know, this was not the conclusion of the Alex Spourdalakis story. Whatever Mr. Wakefield and Ms. Tommey had planned for the video they had taken, the “treat bowel disease and everyone is happy” story was not to be. Instead, he has produced a video of the “medical establishment fails family, leading to tragedy” theme. I do wonder how he managed to work that theme around the facts that the tragedy (aka brutal murder at the hands of his mother) came to pass after Mr. Spourdalakis was seen by Mr. Krigsman.

CBS News journalist Sharyl Attkisson picked up the story and aired some of the video Mr. Wakefield’s team collected in Film provides glimpse into life of autistic teen killed by his mother. What is the subject of her story? The victim? The murderers? No. It’s the film. Likely the title of the online article was not chosen by Ms. Attkisson. Whoever did chose it acted poorly.

The written piece starts out with, yes, the mother:

Chicago mom Dorothy Spourdalakis was ordered to be held without bond early this week, on the charge that she and her 14-year-old son’s caretaker, Jolanta Agata Skordzka, murdered her severely autistic son. Alex Spourdalakis was found dead in June in his bed in the River Grove, Ill., apartment he shared with his mother and Skrodzka.

When Ms. Attkisson presents the discovery of the crime scene, she again presents the murderers first, then the victim. The mother and caretaker were “barely alive themselves”. The key point–they were (and still are) alive.

When police found Alex dead at home in June, his mother and caretaker were barely alive themselves after allegedly overdosing him on medicine and stabbing him in the heart before attempting to commit suicide.

The story presents the “balance” of which group failed. Was it the medical establishment or was (as she presents in a brief clip at the end) society’s attitudes about disability and the disabled? She chose this approach rather than checking facts in depth. What options were open to the family? What is the father’s and uncle’s view, as they were apparently worried about the safety of the young Mr. Spourdalakis? What evidence is there that the diagnosis made by Krigsman is accurate. While Krigsman is well thought of in some circles, he is not without his critics nor his own history of possible ethics lapses. Did she search out what supports had been offered to the family? What they had asked for (an attorney, for example, which was provided).

The written article states, “But some in the autism advocacy community take issue with the idea that lack of help is an excuse for murder.”

Really? Only some? And is this somehow limited to the autism community? Ms. Attkisson, what is your position? Is a lack of support an excuse for murder?

But there it is, in black and white, the crux of the story: is lack of help an excuse for murder? The answer is clearly no, it is not an excuse. When did we get to the point that U.S. journalists can be discussing an “excuse” for murder?

What about the lack of help? We have to take Ms. Attkisson’s word that there was a lack of help. Because Ms. Attkisson, investigative journalist, didn’t investigate that question. Instead she presented Andrew Wakefield’s depiction of the story from the murderers. Mr. Wakefield’s word is, well, not good enough for me. People who murder their children and are trying to build a defense are not reliable sources in my opinion. But the word of the accused murderers was enough for Ms. Attkisson. She took the time to investigate the hospital where Mr. Spourdalakis was kept for 2 weeks, but she didn’t bother to look into what resources were available to the family. Was insurance coverage really denied? More importantly, if so, why?

And, yes, she takes Mr. Wakefield’s word for it. She introduces her video segment with the statement that this would be “another unexplained tragedy” if it weren’t for the video he collected.

The story notes:

Dorothy’s suicide note read, in part: Alex will no longer be “treated like an animal” or “subjected to restraints.”

He will no longer be treated like an animal. He met the same fate as the family cat. Even the cat deserved better.

As a human being, I am appalled by this story. I am appalled by the way Ms. Attkisson and CBS have given us a commercial for Andrew Wakefield’s company and failed miserably to do the basic investigative journalism needed.

Much more, as the parent of a child not so unlike Alex Spourdalakis, I am disgusted. A common phrase we hear from parents is “what will happen after I am gone?” What will happen in a world where “caregivers” are excused from murder of their charges? And I know I am not alone in my views, having discussed this with other parents of disabled children. I won’t presume to present the autistic perspective on this, but here is one account:CBS Provides Glimpse into “Documentary” Defending Autistic Teen Alex Spourdalakis’ Killers .


by Matt Carey

Greg Simard pleads guilty in attempted murder of autistic boy

6 May

This is one of those stories that is so awful as to be unbelievable. The full story is at Greg Simard pleads guilty to attempted murder. An autistic boy was in a residential placement. On one of his last days before going back to his family full time, a worker in the placement took the autistic boy out into the woods and beat him and left him to die. There are also questions of sexual abuse. The assailant’s explanation:

“He’s a drain on society. His life is meaningless. It’s no big deal,” Greg Simard, 24, told police. “I did it for my country. . . . Um, maybe someone should come and shake my hand. . . a few pats on the back. . .”

Simard discussed the event itself:

“I just grabbed him by the hand and said come for a walk. . . . I hope he’s dead. He’s a drain on society,” Simard told Det. Amanda Pfeffer.

Questioned about the boy’s underwear being torn off, Simard said, “I didn’t sexually assault a retarded kid. That’s disgusting.”

I can’t express enough the sorrow that I feel for the child and his family. And I offer them my apologies as I make this point:

This is one big reason why people fight to destigmatize disability. The biggest reason is because it is just the right thing to do. But when the message is put out in public, over and over, about the disabled as burdens on society and somehow worth less than non-disabled citizens, people like Greg Simard are listening. And there are many more who won’t go to such an extreme, but still will accept and act on dehumanizing rhetoric.


By Matt Carey

An example of why protections must be in place for special education funding

22 Apr

Federal law requires that schools do not reduce support for special education. School can reduce support, but if and when they do they face penalties. The Federal Government has never lived up to its obligation to pay for 40% of the costs of special education. This results in the view by some school officials that special education is an unfunded mandate.

Here’s a hint: education is an unfunded mandate. Education for all is required by law and not paid by the federal government.

Why write about this now? Because of a guest column to a small newspaper in Southern Illinois: Mark Lounsberry: Special-education costs can’t continue.

Mr. Lounsberry is a former president of their board of education. He decrys the costs of special education. In discussing laws which require localities to educate their students, he notes:

The most draining of these are the special-education statutes, both federal and state.

He notes:

They require costly individualized educational plans for the mentally, physically and learning-disabled. Failure to comply invites lawsuits and withdrawal of funding.

Yes, if they don’t educate special needs children they lose funding. If they don’t educate non special education students they will face lawsuits and loss of funding as well.

Mr. Lounsberry feels that behavior disorders are sapping the budget:

These days behavior disorders are included as a part of special-education programs. Most of these problems are a direct result of our crumbling family structure and have swelled the enrollment of special education.

Yes. Bad family structure leads to special education. Bruno Bettleheim is invoked too often in online discussions, in my opinion. But this time we are seeing shades of Bettleheim.

He also notes:

When our budget is reduced and the state does not meet its financial responsibility to our district, we still are required to meet 100 percent of the financial needs of our special-education students.

Small correction (OK, not small): they are required to meet the educational needs of their special education students, not their financial needs.

And, now for the value judgement:

For those not protected by mandate, including our best and brightest, who presumably will be our community leaders and problem solvers, the resources are disproportionately reduced.

Yes. Those who are not in special education are the “best”.

I can’t wait for one of them to grow up and take over the leadership position Mr. Lounsberry appears to leave vacant with his presence.

In case you think I’m stretching the value judgement statement above:

Our education tax dollars would be easier to manage if not burdened with expenses that are more suited for social welfare.

How did someone so ignorant about education become the president of the school board? Seriously?

OK, disabled children are a “burden” to him and do not deserve to be educated. Instead they are a social welfare situation. (why do I doubt he would be willing to pay tax money for the social welfare of the disabled?)

He concludes with:

Education budgets are voted down and local school boards are told to spend dollars more wisely while they have little control over how they must spend their money.

Spending money to educate children is spending it wisely, Mr. Lounsberry. Spending money to educate “the best” as well as the disabled.

This sort of ignorance is precisely why we had no education for the disabled for most of our history. It is only in my lifetime that we as a people recognized our responsibility. Without federal laws protecting special education funding, the Mr. Lounsberrys of the world would eject those with special needs to the (non existent) social welfare system.

By Matt Carey

Sun Times: Lawsuit alleges school bus aide slapped autistic boy

19 Apr

The Chicago Sun Times reports Lawsuit alleges school bus aide slapped autistic boy.

A mother noticed her child was resisting going on the school bus so she put a voice recorder in his backpack. She recorded an aide slapping her child. Twice. There are indications that perhaps the child was potentially doing something inappropriate as evidenced by the statement:

“Get your hands off my chest or I will break your fingers. Word,” before hitting him again, the suit claims.

If so, the aide should have reported the behavior for the child to get help. Instead, apparently, she hit him.

This follows on a story a year back about a New Jersey father who found that aides in his son’s class were apparently acting inappropriately and were verbally abusing his son. A more recent story discussed putting video in special education classrooms.

There is a significant difference between children in regular education and children in a classroom where most or all have significant communication disabilities. In a regular education environment, a parent could get information about what happens in the class from the child. The child can report back (although, sadly, often abusers understand that children will not speak about the abuse). There is no such window into a classroom of children without the ability to effectively communicate.


By Matt Carey

ASAN Releases Policy Brief on Organ Transplant Discrimination; Meets with Senior HHS Leaders

10 Apr

The Autistic Self Advocacy Network (ASAN) issed a policy brief last month on the subject of organ transplant discrimination. Over the past year a few cases of denial of organ transplants on the basis of disability made the news. Many more did not.

ASAN met with people in the Department of Health and Human Services (HHS) to present their brief and urge an end to discrimination in organ transplants based on disability.

The brief is:

Organ Transplantation and People with I/DD: A Review of Research, Policy and Next StepsAri Ne’eman, Autistic Self Advocacy Network
Steven Kapp, University of California, Los Angeles
Caroline Narby, Autistic Self Advocacy Network

Here is the ASAN statement:

This week, the Autistic Self Advocacy Network (ASAN) released a new policy brief on discrimination against people with intellectual and developmental disabilities in organ transplantation. In the twenty-three years since the passage of the Americans with Disabilities Act, people with disabilities have achieved much progress in securing our rights in a wide variety of settings. Unfortunately, the field of medical decision-making remains too often immune from civil rights law. In few places is this as evident as in the context of organ transplants, where our policy brief outlines widespread discriminatory practice. Many people with I/DD fail to even make it to the evaluation process, and those who do are frequently denied access to transplants on the basis of their disability. Eighteen years after the landmark Sandra Jensen case in California, it is long past time for action on this issue.

On Tuesday, ASAN, the National Disability Rights Network and Not Dead Yet met with senior leadership in the Department of Health and Human Services to urge the federal government to issue new guidance addressing discriminatory practices in organ transplantation. Our brief provides comprehensive documentation on this issue and offers next steps for regulators, legislators, funders and activists. Produced with the generous support of the Special Hope Foundation, this will be the first of several policy briefs produced by ASAN this year examining the issue of access to health care for people with intellectual and developmental disabilities.

We invite you to download a copy of Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps on our website by clicking here. Help us spread the word about discrimination in organ transplants – together, we can achieve equal access for all of us.

Produced with support from the Special Hope Foundation


By Matt Carey

San Jose Mercury News: Three East Bay parents of autistic kindergarten children file federal civil rights lawsuit claiming teacher abuse

5 Apr

Following on the discussion of Texas allowing video monitoring of special education classrooms, a story from the California San Francisco Bay Area points out why such monitors are needed: Three East Bay parents of autistic kindergarten children file federal civil rights lawsuit claiming teacher abuse. The story begins:

With the filing of a federal lawsuit Wednesday, a horrific child abuse scandal burst into public view in the Antioch school district, involving three autistic students who allegedly were slapped, pinched and verbally abused by a teacher — and school officials who failed to report the accusations to police as the law requires.

The incidents, which bear a sad similarity to others that have come to light around the Bay Area in recent months, have already forced the accused teacher’s resignation and compelled a criminal investigation into the abuse claims. And now the district’s leadership stands accused by the students’ parents of creating a hostile environment that violated the autistic children’s civil rights.

Documents show the Antioch district’s own investigation of the concerns about teacher Theresa Allen-Caulboy ramped up only after this newspaper first reported on a similar abuse situation in Brentwood, where a convicted child abuser was allowed to continue teaching special needs students. A classroom aide to Allen-Caulboy cited the newspaper report as her impetus for reporting the abuse allegations.

More at the Mercury News.


By Matt Carey

San Francisco Chronicle: Texas Senate passes special education cameras bill

4 Apr

A big question is how does one monitor the status of a special education classroom when the students are unable to communicate effectively? With a non disabled child, or a disabled child who can communicate well, a parent can ask the child what is going on in the classroom and know to some degree of certainty what is going on. A parent can find out if, for example, another child is a bully or if the teacher is not treating students well. But for some classes, this is not the case. The parents must rely on the teacher reports. And changes in behavior for their children.

Such was the case in New Jersey last year when a parent sent his kid to school with a recording device. The child was having more difficuties with time and the father found that staff were verbally abusing the students.

Another state, Texas, has now passed a law requiring video monitoring in specual education classrooms. The San Francisco Chronicle discusses this in: Texas Senate passes special education cameras bill.


By Matt Carey

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