An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

Autistic Hoya: An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

Trigger warning/content: Ableism, violence, murder, torture, abuse of disabled people, electric shock, aversives. 

An Unholy Alliance:

Autism Speaks and the Judge Rotenberg Center

Lydia Brown

Autistic and disabled activists, as well as our allies, have for years criticized Autism Speaks' long history of dehumanizing rhetoric about autistic people, irresponsible financial practices, and unconscionable claim to represent autistic people without including any autistic people in their leadership — in direct contradiction to the principles of the disability rights movement. I have written numerous times on the myriad of reasons why autistic people, writ large, not only decline to support Autism Speaks but also actively condemn their goals and practices. 

Given Autism Speaks' history of damaging PSAs that exploit autistic people and our families, as well as their continual refusal to meaningfully include autistic people throughout their leadership and decision-making process, I am rarely shocked when new information arises about their projects and programs. I was not shocked at their latest PSA, an over twenty-minute-long mini documentary ostensibly about non-speaking autistic people who type to communicate, but which in reality faced sharp criticism from high-profile non-speaking autistic Amy Sequenzia, who types herself. I was not shocked at their announcement of a policy summit in Washington DC this week that will in all likelihood ignore the concerns of real autistic people about education, employment, housing, healthcare, or community living. I was not shocked (though I was deeply saddened) to read founder Suzanne Wright's message yesterday in advance of that policy summit, which once again resorted to fear-mongering language like epidemic and national health crisis, to objectify autistic people as burdens on their families or tragedies for society.

But I was shocked and profoundly disturbed by the revelation that at Autism Speaks' Walk Now for Autism in Washington DC, the city where I live, they chose to host and feature the Judge Rotenberg Center as one of their exhibitors at a resource fair.

Let me reiterate that one more time in case the prior sentence was not sufficient to jar your conscience:

Autism Speaks featured the Judge Rotenberg Center as a resource for autistic people and their families. 

Here is a scanned image of their card (you can click for a larger image) from the DC Walk's resource fair, including the Judge Rotenberg Center (#15) on the list of service providers. (Image description below the post.)

For those who may not be regular readers of Autistic Hoya, let me elaborate on the history of the Judge Rotenberg Center. The JRC, formerly known as the Behavior Research Institute, was originally founded in 1971 by Harvard-educated psychologist Matthew Israel, who studied behaviorism under B. F. Skinner. Israel opened shop in California, taking in students with significant developmental, neurological, and behavioral disabilities with a no-expulsion, no-rejection policy. His methodology of treatment was predicated on techniques called aversive interventions — slaps, forced inhalation of ammonia, food deprivation, sleep deprivation, prolonged restraint, deep-muscle pinches intended to inflict maximum pain, and long-term seclusion. One of the more disturbing practices that Israel favors is called "behavior rehearsal lessons," in which students are coerced into producing unwanted behaviors solely for the purpose of subsequently punishing them. Essentially, aversive interventions operate on the same philosophy that some people apply to animals — if you pair an unwanted behavior with a painful stimulus, the unwanted behavior will go away. 

Except in California, one of Israel's students died as a result of his "treatment" methods. The BRI was forced to relocate, and Israel settled in Rhode Island, where his abusive practices continued. In the early 1990's, Israel had a brilliant epiphany — what if he were to use electric shock as an aversive? Rhode Island's regulatory agency refused to permit the BRI to subject its residents to electric shock punishments, and so Israel moved the facility once again to Massachusetts, where it has remained ever since. The BRI invented their own device, known as the graduated electronic decelator, which is intentionally designed to be more powerful and more painful than a police taser. Students are forced to wear electrodes attached to various parts of their bodies, and whenever they engage in any unwanted behavior (anything from head-banging to flapping their hands to getting out of their seat without permission), staff press a button that causes an electric shock. When the state of Massachusetts attempted to end this barbaric practice, Israel sued the regulating agency. When he prevailed, forcing the then-Commissioner of Mental Retardation to resign, he renamed the facility after the judge who oversaw the agreement — Ernest Rotenberg. 

At least six students with disabilities have died at the JRC either directly or indirectly because of the torture inflicted upon them in the name of treatment. The former and current U.N. Special Rapporteurs on Torture, Manfred Nowak and Juan E. Méndez, have condemned the JRC's practices as torture. The U.S. Department of Justice's civil rights division has been investigating the JRC since around the time that footage of the JRC's shock treatment (link has a photosensitive epilepsy warning in addition to the trigger warning for torture) was played in open court during a civil lawsuit against the facility. The JRC is the only facility in the entire United States that uses electric shock as punishment on disabled people — a form of abuse that would readily lead to public outrage if used on convicted prisoners or animals, but that remains largely unquestioned when called "treatment" and used on disabled people instead. 

People with disabilities, family members, and community advocates have been calling for an end to the JRC's abuses for decades. I have compiled a long list of links to articles, formal reports, court documents, and videos documenting the JRC's brutal practices. Of the myriad of abuses that occur in institutional settings, the JRC's are certainly among the worst.

And yet Autism Speaks had the gall to include the JRC as a "service provider" in their resource fair at the DC Walk Now for Autism.

This is the organization that is hosting a national policy and action summit to develop a national plan on autism in Washington DC this week. An organization that explicitly and unabashedly partnered itself with the Judge Rotenberg Center. Autism Speaks' history of excluding autistic people from leadership (up through the utter absence of any autistic people whatsoever on their board in the history of the organization's existence) ought to be troubling already — and their repeated insistence on justifications for violence against autistic people murdered by family members or caregivers shocking to the conscience. This alliance between Autism Speaks and the Judge Rotenberg Center is outrageous beyond belief.

I urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people. It is not possible in good conscience to lend one's support to an organization that not merely siphons money away from local communities and into research that does not benefit autistic people, but actively aligns itself with a facility with a widely publicized, well-documented history of brutal abuse and torture of people with disabilities.

Those of us who are autistic deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that seeks to benefit us rather than harm us. We deserve a national plan on autism that condemns abuses such as those at the Judge Rotenberg Center rather than encourages complacency with those practices, let alone directly endorses them. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.

Autism Speaks — it is well past time for you to listen. 

(For even more irony and another healthy dose of outrage? Autism Speaks actually issued a statement explicitly condemning the Judge Rotenberg Center about a year ago, following Andre McCollins's case against the JRC going to trial. Andre, who is autistic, was shocked thirty-one times in seven hours after refusing to remove his jacket. You can read the Autism Speaks statement here. Let that irony and outrage keep building.)

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Image description: Two scanned images of a hand-held printed card are side by side. The background of both is white. The front side bears the Walk Now for Autism Speaks logo, with the motto, Research Awareness, Compassion, beside the event information — DC Walk Now for Autism Speaks Saturday November 2, 2013 The National Mall, 8:30AM Registration, 10:00AM Walk Start. Then there is more text, "Walk Now for Autism Speaks is a fun-filled, family friendly event and is Autism Speaks' single most powerful force to fund vital research that will lead us to the answers we need. This is our 13th annual Walk Now for Autism Speaks event in the Washington, DC community!" Then a picture of a tend with a big Autism Speaks banner. Then "thanks to our generous sponsors" followed by a variety of foundation and corporate logos. The back side of the card bears a header that says "Please join us in the RESOURCE Fair!" and has two columns under that, one with booth number, and one labeled Service Provider. There are 34 booths numbered, belonging to various autism-related organizations, centers, or service providers. Number 15, which is at the top of the second column, is the Judge Rotenberg Educational Center. Beneath the list is a satellite image of the walk area with various stations labeled. 

Blue Springs mother outraged school district allowed to investigate alleged abuse internally

Blue Springs mother outraged school district allowed to investigate alleged abuse internally

BLUE SPRINGS, Mo. - Should a Missouri state law that allows school districts to internally investigate child abuse allegations against educators be changed?

One Blue Springs family is questioning whether the current law allowing school districts to do just that serves the best interest of children in the Show-Me State.

Jake Livingston looks like the average 9-year-old boy next door.

“(He) likes to write jokes and tell stories. Just overall if you met him, you would think he’s a normal kid,” said Susan Wolfe, his mother.

Jake has childhood alopecia. The disease caused him to lose his hair. He also has a high-functioning form of autism and ADHD. His school, Sunny Pointe Elementary, offers him some extra individualized help through its Special Education classroom.

But Wolfe said an incident in that classroom on May 7 came as a complete surprise.

Wolfe said it started as a misunderstanding between the special education teacher and Jake regarding a school assignment.

She said Jake believed he had completed the assignment the night before. The special education teacher believed it was not completed. The teacher brought Jake a new worksheet and asked him to complete it.

Wolfe said Jake ripped up the paper. That’s when she said the teacher crossed a line.

“She actually grabbed him by the back of his neck and the arm and pushed him to the floor out of his chair,” said Wolfe.

Jake had a small mark on his head from the incident. Wolfe took a picture and reported the incident to the child abuse hotline. However, she said she was surprised to learn the school district would be allowed to investigate itself. 

Missouri law allows a school district to choose whether to investigate the allegation itself or have the Department of Social Services conduct the investigation.

Read the Missouri law | http://www.moga.mo.gov/statutes/c100-199/1600000261.htm

Wolfe told 41 Action News Investigators she believes that is a conflict of interest. She said she was not happy with how the Blue Springs School District performed its investigation.

“During this whole investigation I never knew the investigator’s name. They never contacted us," Wolfe said. "The only thing they had from us was a statement that my son wrote as a third grader as to what happened.”

The investigator obtained written statements from Jake, the teacher involved and two other paraprofessionals who were working in the classroom at the time.

Jake’s handwritten statement mirrored the statements of the two paraprofessionals. All three wrote that the teacher grabbed Jake’s arm and neck and pushed him to the floor.

The statement the teacher wrote said Jake fell to the floor.

In a letter to the Missouri Department of Social Services, the school district's Board of Education president wrote the investigation found the charge was unsubstantiated.

Wolfe told the 41 Action News investigators she was angered by the report.

“How can two adults and a child have similar report, and then the one teacher that did the assaulting has a different report and it can be dismissed?” said Wolfe.

In the report, the investigator described another incident at the same school involving the very same teacher. The investigator wrote that the principal told him in February -- just three months earlier -- that he had written and spoken to the teacher for grabbing a child by the neck and forcing his head down on the desk.

“That's alarming to me that this is not the first issue that she has had and has been addressed with her,” Wolfe said.

Her attorney, Deborah Johnson, said she believes this presents a conflict of interest.

“Why are school districts allowed to investigate themselves when there is an allegation of abuse or neglect? That makes no sense,” Johnson said.

Johnson told the 41 Action News Investigators she thinks lawmakers should take a second look at the provision of the law that allows school districts the option to investigate themselves.

“A hotline report is filed against me for social services to investigate, and that report is given to me to investigate myself? What am I going to say ‘Yes, I am guilty?’ No, I'm not going to say that. That just seems insane to me,” Johnson said.

Information obtained from the Missouri Department of Social Services shows the state received 600 calls about schools, both private and public, into the child abuse hotline in 2011. Statistics show 29 of those calls were substantiated. The Department of Social services does not keep statistics on how often school districts choose to perform investigations themselves.

The Blue Springs School District told 41 Action News the teacher in question resigned while the district was performing the investigation. A spokesperson said the district would have no further comment on the incident due to pending litigation.

A 41 Action News investigation found that teacher is still teaching special education at another school in the Kansas City area.

Jake’s family and their attorney feel that is proof the law needs

Read more: http://www.kshb.com/dpp/news/local_news/investigations/parents-question-conflict-of-interest-in-one-state-law#ixzz2kZT4Hz00

Wandering Is a Major Concern for Parents of Children With Autism - NYTimes.com

Wandering Is a Major Concern for Parents of Children With Autism - NYTimes.com

NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.

While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.

The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.

Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.

Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.

Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.

Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”

Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”

That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.

Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.

Under federal criteria, which most states follow, the Amber Alert system can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”

Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”

If consideration had become action, perhaps Avonte would be home safe right now. There is still a lack of awareness in schools. Simply to provide better teacher training on wandering would help prevent future disappearances.

So where is the federal autism program on wandering prevention? Yes, budgets are tight, but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.

Now 13, my son wears a tracking device, and is learning ways to keep himself safe. In his room are miniature replicas of his favorite exit signs, and a laptop, which he uses to draw them whenever he likes. He hasn’t attempted to reach the highway since getting the laptop. He’s also at middle school now, cared for by an amazing staff. While Connor still has phobias that can make bolting behaviors difficult to prevent, we finally have the resources to help keep him safe.

But not nearly enough is being done to keep children like Avonte from disappearing. Too many parents are still going through the anguish of losing their wandering children.

Lori McIlwain is the executive director of the National Autism Association.

A Better Bottom Line: Employing Individuals With Disabilities | Gov. Jack Markell

A Better Bottom Line: Employing Individuals With Disabilities | Gov. Jack Markell

Ten years ago, I met a 25-year-old employee of Bank of America in Delaware. He had Down Syndrome and was enthusiastically making t-shirts on a silk screen press. He told me how thrilled he was to be working.

I asked him what he had done before getting that job. He told me he had sat at home for six years watching TV with his parents. And during that time, his parents watched after their disheartened son.

This is the reality for too many Americans with disabilities and their families. Twenty-three years after the passage of the Americans with Disabilities Act, only 20 percent of the 54 million Americans living with a disability are employed or seeking employment, compared to almost 70 percent of people without disabilities.

It's time, once and for all, to move the needle. That's why I recently released my "A Better Bottom Line: Employing Individuals with Disabilities" blueprint for governors at the conclusion of my one-year tenure as Chair of the National Governors Association.

This blueprint is not about feel-good social policy. As Greg Wasson, CEO of Walgreens, has told his peers, Walgreens employs people with disabilities not out of charity, but as a business decision. 

At Walgreens' distribution facilities in Connecticut and South Carolina, approximately half of the employees have disabilities. And those two centers perform as well as, if not better than, any other facility in the Walgreens supply chain.

At Acadia Windows and Doors in Maryland, six out of 60 employees have disabilities. Neill Christopher, the company's vice president, said he resisted hiring the first employee with a disability out of a fear that window manufacturing is too dangerous. Now, several employees later, he reports that the company operates safer than ever and that his new employees not only make the company better, but also kinder.

CAI, a regional IT company, has committed to making people with autism 3 percent of its consultant base within three years. SAP, the mammoth enterprise software company, has made a similar commitment. Both companies have done so because they recognize that many people with autism excel at software testing.

My blueprint is designed to give governors tools to increase employment of people with disabilities in their states. Based on input from business leaders, it suggests that states change their approach. Historically, our Divisions of Vocational Rehabilitation have asked companies to do a favor to those with disabilities by offering them a job. That will change. In the future, our Departments of Labor will seek to be real business partners to companies looking to hire people with particular skills. Some of those people recommended may have disabilities and some may not. But the real focus will be on the ability and not the disability.

In addition, states must do a better job of preparing our youth with disabilities. Too often in the past, there has been an expectation that they would sign up at 17 or 18 for a lifetime on public benefits. No more. Now our young people will know that we have an expectation that they will find work and even a career. They will be educated and have access to career exploration opportunities accordingly.

In an era when there seems to be so little common ground between Democrats and Republicans, this issue stands apart. For my blueprint, I teamed up with South Dakota Republican Governor Dennis Daugaard, a remarkable man who grew up in South Dakota with two parents who are deaf.

Federal officials as far apart as Democrat Senator Tom Harkin and Republican members of congress Pete Sessions and Cathy McMorris Rodgers are working together on this issue.

And when I testified at the Senate HELP Committee at the invitation of Senator Harkin, I was approached afterward by Republican Senator Lamar Alexander. He told me how much he appreciated that our approach is focused on how states can help businesses identify, hire and retain people with disabilities rather than how we can extract more federal government money for additional social programs.

In fact, that's one reason that our initiative is a real win-win-win. Not only will the individuals themselves have a sense of purpose and know what it's like to be productive. Not only will their family members have a chance to live fuller lives themselves. But in addition to that, taxpayers win. Instead of spending millions of dollars on benefits and welfare for people with disabilities, many of these budding employees and entrepreneurs will turn into productive taxpayers themselves. And that's something that liberals and conservatives alike should embrace. 

All it takes is for companies throughout the country to follow the lead of businesses like Bank of America, Walgreens, Acadia Windows, CAI and SAP, who are all employing skilled people like the 25-year-old I met a few years ago. 

Jack Markell is in his second term as governor of Delaware. He previously served three terms as the state's treasurer and was the 13th employee at Nextel (a name he coined), where he served as senior vice president for corporate development.

 

Education Law Center seeks pro bono lawyers to represent disabled students | NJ.com

Education Law Center seeks pro bono lawyers to represent disabled students | NJ.com

NEWARK — The Education Law Center is seeking lawyers from the private sector to volunteer to represent children with disabilities whose parents or guardians cannot afford to hire an attorney.

The center’s staff cannot meet the demand for legal assistance for disabled students who are who are deprived of their rights to special education services as required by law. The center supplements their staff with private lawyers who offer pro bono representation.

Along with Rutgers School of Law-Newark, Volunteer Lawyers for Justice andDisability Rights New Jersey, the ELC will hold a day-long seminar Nov. 19 in Newark to train lawyers. The fee for the training is $125, but the ELC will waive it if an attorney agrees to represent at least one child in a special education matter.

Continuing education credits are available to attendees who practice in New Jersey, New York and Pennsylvania.

The Education Law Center is a leading advocate for ensuring equal opportunity for the state’s public school children.

“This is the perfect opportunity for attorneys to learn about special education law and to help indigent children with disabilities,” ELC Senior Attorney Ruth Lowenkron said. “The training is hands-on, and a mentor will be assigned for each special education case taken.”

Lowenkron said the center offers these training sessions every 18 months to two years, and about 100 attorneys attend. This is the first year the sessions qualify for continuing education credits, she said, so that number may increase.

Facial Expression and Peer Judgment in Autism - West Palm Beach Autism & Education | Examiner.com

Facial Expression and Peer Judgment in Autism - West Palm Beach Autism & Education | Examiner.com

The English idiom “You Can't Judge a Book By Its Cover” is a metaphorical phrase which means that you shouldn't form an opinion about someone based on their outward appearance or other external factors. A study published in the journal Autism found that typically-developing children formed their impressions of their peers with autismspectrum disorder (ASD) in as little as 30 seconds.

Researchers investigated the friendship ratings given by 44 typically developing children to videos of children with ASD. The children making friendship judgments were unaware that they were rating chil­dren with ASD. These ratings were then compared to friendship ratings given to video clips of typically developing children. The 44 child participants rated peers with ASD lower than typically developing children on all aspects of friendship measures. Children with ASD were rated not as trustworthy as the typically-developing children in the videos. Moreover, study participants were less likely to say that they wanted to play with or be friends with the video subjects on the spectrum. These results suggest that impression formation is less positive towards children with ASD than towards typically developing children even when exposure time is brief.

The findings of this study have important implications for intervention in the school context. Children with ASD experience more peer rejection and have fewer friendships than their typically developing peers. Limited facial expres­sivity may further remove children with ASD from meaningful interactions and reciprocal emotional related­ness with others. Negative peer responses can be especially upsetting for more socially aware children with ASD who may be strive but fail to form friendships. Further, distress often increases as children approach adolescence and the social milieu becomes more complex. “Children with autism spend many years learning about facial expressivity, but our research shows that by the age of 11 their slower development in this area is already marking them out amongst their typically-developing peers,” said Steven Stagg of Anglia Ruskin University in England who led the study. “It is therefore important that schools work with typically-developing children to educate them about autism, in order to break through the negative impressions that can be formed through a moment’s contact.”

Does facial expressivity count? How typically developing children respond initially to children with Autism. Steven D Stagg, Rachel Slavny, Charlotte Hand, Alice Cardoso and Pamela Smith. Autism published online 11 October 2013 DOI: 10.1177/1362361313492392

The online version of this article can be found at:http://aut.sagepub.com/content/early/2013/10/10/1362361313492392

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers.

If you enjoy reading my articles, you can click on "subscribe" at the top of the page to receive notice when new ones are published. You can also follow me at http://bestpracticeautism.com.

The Concerns Regarding School Assessments for Educational Autism

Lee's Summit R-7 School District: The Concerns Regarding School Assessments for Educational Autism

This is happening a lot in Lee's Summit.  At one point it was happening 50% of the time.  When I last checked there were 250 students in the district with a medical diagnosis of autism and only 98 had an educational diagnosis.

From the Article The Concerns Regarding School Assessments for Educational Autism

Please read the rest.  Here is a portion that I find significant.

I recently assessed a teenager and diagnosed him with Asperger’s Syndrome. Within the past year two psychologists for different purposes (hospital and disability determination) also diagnosed him with Asperger’s Syndrome. Yet the school believed that he did not fit the criteria for educational autism based on their assessment. He was failing every subject and having behavioral and social difficulties. No other explanation was given for the problems in school and he was denied special services. Due to a predictable problem he was suspended from school and is now, ironically, receiving services. We are not sure what will happen when he returns to school.