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Monday, September 30, 2013

Daryl Hannah's "Silence"

The news media have reported on the "revelation" that actress Daryl Hannah says that she received an autism diagnosis as a child.  The headline on E! reads: "Daryl Hannah Breaks Her Silence on Autism Struggle."

Some silence:  she's been talking about it for decades.

The Sun Herald (Sydney, Australia), September 20, 1987:
Growing up in Chicago, Daryl Hannah seemed rarely in touch with reality. Her parents divorced when she was seven and she has little recollection of the following four years of her life. Diagnosed as semi-autistic by psychiatrists, Daryl withdrew into a magical mystery tour of her own mind.
"I probably lived a little too much inside my imagination. I used to see witches and leprechauns and stuff," she says. "I actually still remember these things as if they actually happened, so I kind of like to leave that time alone and not rip it apart. Anyway, I guess the psychiatrists thought, 'she's too far gone'.
The Toronto Star, March 1, 1992: 
For a time, when young, she became so introverted that school psychiatric counsellors feared she might be suffering from a form of autism. Taking acting classes as a young teenager at the Goodman dramatics school at night, after her regular high school classes, was doubtless good therapy.
The Palm Beach  Post, September 21, 1993:
Daryl's parents divorced when she was 7. Don Hannah, her father, owned a tugboat and barge company. Her mother, Sue Ferris, is descended from the inventor of the Ferris wheel. After the divorce, Hannah retreated into a state that was diagnosed as ``semi-autistic'' by the time she was 10. She said later she would see witches and leprechauns as though they were actually there. Institutionalization was recommended. Her mother, not an alarmist, took her to the Bahamas instead.
The Herald Sun (Melbourne, Australia), December 9, 2000:
Hannah admits she lived in a fantasy world when she was a child and, to some extent, still inhabits it. She created a world inside her head to combat the traumas that befell her during her childhood in Chicago. When she was seven, her parents divorced and she cut herself off from everyone, refusing to speak. Her withdrawal was so marked that a child psychologist diagnosed autism and suggested she be medicated and put in an institution.
"I think I suffered from social-anxiety syndrome and still do. I am, and always have been, uncomfortable in certain social situations, but in those days it was interpreted as autism.
"I'd been through a bad time and withdrew into myself. My mother didn't listen to the doctors and took me out of school for a year. If I'd been put on medication and institutionalised it would have been the end of me.
"My mother is an amazing woman. Like me, she looks at the world through different eyes. When I was born the doctors wanted to put me in leg braces because I didn't pass their flexibility tests, but my mother refused, waited until I was three and took me to ballet classes instead." 
Good Morning America, October 7, 2003:
DIANE SAWYER (Off Camera):  In fact, I, I'd never seen this before, but you said that when you were young, you were diagnosed as borderline autistic.
DIANE SAWYER: (Off Camera) And you think that in fact that was sort of paralyzing shyness and that the two are related.
DARYL HANNAH: I think that it definitely has some impact on my social ineptitude, yeah. It's, and also just the fact that I tend to, you know, go off in my imagination a lot and I'm uncomfortable around certain situations.

Sunday, September 29, 2013

Update on ASD Football Player

The Newark Star-Ledger has an update on a story appearing in previous posts:
After months of back-and-forth through various hearings and appeals, the state’s governing body for high school athletics has granted a fifth year of athletic eligibility to autistic Brick High School kicker Anthony Starego, who became a national sensation last October when he booted a game-winning field goal in a varsity football game.
The New Jersey State Interscholastic Athletic Association’s unprecedented decision to allow Starego a fifth year was made in conjunction with the Commissioner of Education, Brick High and its football opponents.
Starego had previously been ruled ineligible by the NJSIAA because he had already played four consecutive years of football and turned 19 before Sept. 1.
But after several appeals by the Starego family — who argued playing football helped their son’s development and served as an inspiration for others — the NJSIAA made the surprising decision today to allow Starego to play the rest of this season.
The Daily Record adds detail:
The reversal comes less than three weeks after a federal judge — ruling on a lawsuit Starego’s parents filed against the NJSIAA and state Department of Education — denied a motion for a preliminary injunction to grant Anthony a fifth season.
Raymond and his wife, Reylene, alleged that the NJSIAA and state violated their son’s civil rights under the Americans with Disabilities Act, which requires reasonable accommodations be made to include those with disabilities in interscholastic sports.
U.S. District Judge Freda L. Wolfson wrote in her 29-page opinion that the “plaintiffs failed to show that the Association’s decision denying Anthony a waiver violates the ADA,” but she also rejected every one of the NJSIAA’s reasons for not granting that waiver.
As a result, the NJSIAA potentially faced a protracted legal battle with the possibility of another court ruling in Starego’s favor. The Starego family’s lawyer, Gary Mayerson already had filed a new complaint in Superior Court, relying on Wolfson’s ruling.

According to Steve Goodell, NJSIAA legal counsel, once the federal court affirmed the association's position regarding the ADA, it seemed appropriate to resolve the matter promptly, without excessive, additional debate.

New Ventures for Employing ASD Adults

A number of posts have discussed the employment challenges facing people with autism. Lisa Krieger reports at The San Jose Mercury News:
In San Jose, the company Semperical plans to exclusively hire autistic software testers who work from home to spare them the stress of commuting and office politics. San Francisco's Specialists Guild trains autistic interns as software testers and then places them in full-time positions at companies like SalesForce.
Earlier this year, the global software giant SAP announced plans to hire 650 software testers who have autism. The mortgage finance company Freddie Mac launched an internship program to teach adults data analysis. Goodwill says it plans to offer positions in data entry and other technical jobs. Walgreens trains autistic workers to set up displays, work the cash register and stock and organize shelves. 
This is the challenge: An estimated 750,000 adolescents with autism are about to become adults. They are woefully unprepared to leave the "safety net" of the well-funded educational system, said Peter Gerhardt, director of adolescent education at the McCarton School in New York City. 
Most will graduate out of high school to nothing; about 85 percent will be under or unemployed, and live with family members. They'll sit at home -- and a parent often has to sit at home. And when parents die, their children may go into state-run institutional services. 
"What could we do if our corporate talent included those who are now locked at home, playing video games?" asked Perricone.

Saturday, September 28, 2013

Custom Jobs

Many posts have discussed employment of autistic adults.  USA Today has a story about Extraordinary Ventures, a Chapel, Hill, NC, nonprofit that creates jobs for people on the spectrum.

Friday, September 27, 2013

Employment and Hidden Disabilities

At The New York Times, Katherine Bouton writes of hidden disabilities:
Most companies are in compliance with the Americans With Disabilities Act, and many seek out employees with disabilities. But there are subtler, gray areas of discrimination, usually unintentional. These can start with the application process.
Some big retail companies use prescreening tests with job applications that can exclude certain employees, said Jan Johnston-Tyler, founder and chief executive officer of EvoLibri, a company in Santa Clara, Calif., whose services include job placement for people with disabilities.
One of Ms. Johnston-Tyler’s clients, a 25-year-old with Asperger’s syndrome, applied for a position at Subway. While most of the online application was routine, the last step was a multiple choice questionnaire. One of the 60 questions was, “Sometimes I have a hard time figuring out how I am supposed to behave around others.”
Most of us would check off the “disagree” option, but as Ms. Johnston-Tyler pointed out, many people with Asperger’s “are generally honest to a fault.” She contacted Subway’s corporate parent and was told that her client could fill out a different application without social suitability questions.
The interview process can be another minefield, as the woman who wrote to me about the library position found. And once people with hidden disabilities start their jobs, they face more risks.
Ms. Johnston-Tyler sees a lot of inadvertent discrimination. She told me about a client with Asperger’s who was working for a community college as an accountant and was having a very difficult time interacting with others because of his poor social skills and boundaries. He was lonely and wanted social time with others, and got in trouble for asking too many questions.

Thursday, September 26, 2013

ADA Generation

Senator Tom Harkin (D-IA), chair of the Health, Education, Labor, and Pensions Committee, today released a report on the "ADA Generation"
Harkin also calls for enactment of several key pieces of legislation—including a reauthorization of the Workforce Investment Act­ (WIA)—to create opportunities and incentives for young people with disabilities to work. The HELP Committee recently passed by a bipartisan vote of 18-3 a WIA bill that reauthorizes the Rehabilitation Act, including vocational rehabilitation (VR) programs. Harkin worked on a bipartisan basis to make improvements to the Rehabilitation Act—Title V of WIA—aimed at making sure that young people with disabilities have increased preparation and opportunities for competitive, integrated employment. The bill requires state VR agencies, in conjunction with local educational agencies, to make “pre-employment transition services” available to students with disabilities.
The bill will also require individuals under the age of 24 with a significant disability to make a serious attempt at competitive, integrated employment—including getting pre-employment transition services and utilizing VR services—before he or she can consider working at a segregated workshop or sheltered employment setting. For individuals who are currently in sheltered employment settings, the bill will increase opportunities to move into competitive, integrated employment by requiring ongoing career counseling, information, and referrals about programs that offer employment-related services and supports. Updates to the bill also focus on creating better alignment of government programs at the national level that are focused on employment and independent living for people with disabilities.
Portions of the report deal with autism:
 Exciting new postsecondary programs are recognizing the untapped potential of the ADA Generation and designing options to fit their unique needs. The Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) provides almost $11 million to 27 institutions and education consortia to expand their programs for students with intellectual disabilities. In 15 states, the Community College Consortium on Autism and Intellectual Disabilities (CCCAID) is working to support colleges as they develop programs for students with autism and disabilities. Programs like TPSID and CCCAID are providing important opportunities for students to enter and succeed in postsecondary education; however, they remain limited in reach and scope.
Members of the ADA Generation also need consistent supports and services once they enroll in higher education programs. Currently, young people with disabilities are less likely to complete a degree or certificate program than their non-disabled peers, and students with disabilities who do graduate often take twice as long to do so.xxvi A key factor significantly contributing to the success of the ADA Generation is the availability of supports and services on college campuses. Students are eligible for supports under the ADA, the Rehabilitation Act, and the Higher Education Opportunity Act Amendments of 2008. But unlike in high school, students must seek out offices providing disability services on their own and work with professors and other university personnel to ensure that their accommodations are met. The TPSID programs and the autism and intellectual disabilities consortia have provided us the knowledge that consistent, tailored supports need to be available at the post-secondary level for students with disabilities to successfully gain certificates, two-year degrees and four-year degrees that will greatly increase their ability to enter the job market, sustain a career and become economically independent. We must use the information gained from these pilots to inform how all post-secondary programs support young people with disabilities.xxvii
 xxvi U.S. Department of Education. The Condition of Education. (2009). National Center for Education Statistics. Washington, DC.
xxvii Grigal, M. .Hart, D., Weir, C. (2012). A Survey of Postsecondary Education Programs for Students With Intellectual Disabilities in the United States. Journal of Policy and Practice in intellectual Disabilities. 9(4), 223-233, December 2012.

Wednesday, September 25, 2013

Autism Job Club

At Fox and Hounds, Michael Bernick writes:
In the workforce field, as in other fields, most start-ups will need to pivot several times to survive. So it is with our Bay Area Autism Job Club. The Autism Job Club is a project of AASCEND (Autism, Asperger Syndrome Coalition for Education, Networking and Development), the volunteer Bay Area group for adults on the autistic spectrum. We have undertaken three employment strategies since 2011, and each strategy has changed course at least one time. 
The Autism Employment Network is to draw on family, relatives, friends and neighbors of people with autism, to identify job openings and assist in retention. We have found slow going in building such a Network—jobs are scarce, everyone is deluged with employment requests, most of all it is highly labor intensive to contact potential Network members, and we are all volunteers.
The Autism Employment Training Venture:  Conventional wisdom is that persons on the autistic spectrum possess unusual skills for software testing. In truth such skills probably are held by a small segment of persons on the spectrum. However, the perception of unusual skills  has led to a number of high profile business ventures to directly employ persons on the spectrum in software testing. 
  The viability of these businesses remains in doubt. Specialisterne, the best-known of these businesses, started in Denmark in 2004, has grown to a reported 50 employees in 2011, though its growth has been fueled by the generous employment subsidies through the central Danish government. Aspiritech in Illinois is struggling, and Semperical, in the Silicon Valley, has delayed its start as it restructures its business plan.
 The Job Club itself, an effort of job search skill mastery and mutual support among persons on the spectrum, is starting its third cycle on September 28. 

Tuesday, September 24, 2013

Court Upholds ABA Order in Florida

A federal appeals court has upheld a ruling that impoverished Florida children with autism cannot be denied a costly but proven treatment that can help them lead more productive lives.
The 11th U.S. Circuit Court of Appeal in Atlanta has ruled that U.S. District Judge Joan Lenard of Miami was justified when she ordered the state Agency for Health Care Administration to pay for the treatment. Lenard’s ruling could affect thousands of Florida children who have the often-debilitating neurological disorder, enabling them to receive what is called applied behavior analysis, an intensive treatment that can help autistic children speak and function at a higher level.

Autism Speaks reports:
The decision by the 11th Circuit U.S. Court of Appeals was hailed as a victory by the Autism Speaks Legal Resource Center, which intervened on behalf of the plaintiffs, three children diagnosed with autism, against the Florida Agency for Health Care Administration (AHCA), which administers the state's Medicaid program. The plaintiffs had sued the state in 2011, contesting its blanket denial of ABA coverage on the basis the therapy was "experimental."
In a strongly worded opinion, U.S. District Court Judge Joan Lenard in March 2012 ordered the state to cover ABA, asking, "How many children were lost?" as a result of the state's denials.
The appeals court, however, did remand the case to Lenard to clarify that AHCA retains the authority to determine the medical necessity for ABA coverage on a case-by-case basis. The appeals court noted that AHCA in its appeal had dropped its claims that ABA was experimental, but was concerned Lenard's order could be misinterpreted to require blanket coverage of ABA.
Lenard had found that “there exists in the scientific and medical peer-reviewed literature a plethora of meta-analyses, studies and articles that clearly establish ABA as an effective and significant treatment to prevent disability and to restore children to their best possible functional level and restore their developmental skills.”

Monday, September 23, 2013

Debunking a Medical Test for Autism

Previous posts have discussed the possibility of  medical tests of children or pregnant mothersAt Forbes, Steven Salzberg  writes of a a purported link between autism and maternal antibodies (see an earlier post):
Perhaps the biggest red flag is that the two lead authors, Daniel Braunschweig and Judy Van de Water already have a patent on the proteins described in their paper, and Van de Water is involved with a company, Pediatric Biosciences (PBI), that is already marketing a test to predict autism based on this study. Van de Water is the Chief Scientific Advisor for the company, which has licensed her patent for this specific test.
 ...Van de Water and her friends at Pediatric Biosciences seem far more interested in making money off the fears of prospective parents. PBI is planning to charge about $800 for their test, which they’ll begin selling next year. Stanford University biostatistician Steven Goodman says that they are “peddling false hope that giving birth to autistic kids can be avoided.”
A news article in Science last week raised many serious questions about Van de Water’s study and its claims. Several scientists quoted in that article questioned the premise of the study: that antibodies from the mother somehow get into the brain of the developing fetus. Yale scientist George Anderson said the data are too preliminary and the statistics too weak to support a clinical test (essentially the same argument I’m making here).
From the Science article:
Financial considerations aside, the key to any medical diagnostic test is its positive predictive value, a number that indicates how often a test, if positive, is right, [Yale's George] Anderson says. In a disorder such as autism, which has a prevalence in the general population of about one in 88 births, even a few false positives very quickly render a test of limited value, he says. Based on his calculations using Van de Water's data and the prevalence of autism, "I get a positive predictive value of 16.5%, which is pretty bad." At that rate, only one out of six positive tests would actually be correct, he explains.
[Stanford's Steven] Goodman says that he came up with the same low positive predictive value after crunching the data provided in Van de Water's paper. "That assumes that you accept these numbers at face value, and I don't," he says. Based on the design of the study and his own analysis of the group's published data, he describes Pediatric Bioscience's claim that a positive result on a test for these antibodies will mean that a woman has a "99 percent" likelihood of having a child with autism as "completely false."
Van de Water and D'Alvise respond that the company's press release was "a bit unclear as written" and that likelihood "was not meant to convey likelihood in the statistical sense, but rather the 99% accuracy with which the study demonstrated specificity of the biomarkers for ASD." They also say that test is not meant to screen the general population but would be for women at higher risk of having autistic offspring, such as those who are older or who already have a child with developmental issues.

Sunday, September 22, 2013

Early Intervention in Georgia

AP reports on a Georgia early-intervention program.  The article starts with an anecdote about 5-year-old Brandon Dreher.
“I couldn’t have imagined being here seven weeks ago,” [Marlaina] Dreher said. “My husband, Sean, and I have said, ‘What if we had come here two years ago? Where would we be now?’”
That’s the heart of a partnership between the [Marcus Autism Center] and the Georgia Department of Early Care and Learning. It aims to train a small group of state and contract employees to work with day care operators and pre-K providers throughout Georgia to identify the early warning signs of autism and support parents. Those involved in the effort point to research that shows that symptoms of the autism spectrum disorder, which affects some 1 in 88 children nationwide, can be detected as early as the first two years of life and that early intervention is key.
“Today, if I get a phone call and someone says they’ve got an 8-year-old who is unable to speak and is in need of our help, I know we can help that child. But we cannot help that child nearly as much as we could have if we got that same phone call when that child was 2,” said Don Mueller, executive director of the Marcus Autism Center. “The associated disabilities of autism are not inevitable. They don’t have to happen in many kids. We can intervene and change the course.”
Marcus Autism Center, which operates under the umbrella of Children’s Healthcare of Atlanta, is one of three institutions designated as an Autism Center of Excellence by the National Institutes of Health. The center’s effort with the state Department of Early Care and Learning is part of a broader goal to enhance community outreach and build community resources for children with autism and their families. Center officials hope to eventually expand the partnership to other states and are working with federal officials to bring their work to Head Start programs nationwide.

Saturday, September 21, 2013

WHO and Autism

After spending three days at the World Health Organization Consultation on Autism and Developmental Disabilities, I have never been prouder to be a member of the global autism community and an employee of Autism Speaks.
Over the course of this historic meeting, Andy and I heard so many participants thank Autism Speaks for its leadership and commitment to the Autism Speaks Global Autism Public Health initiative.

Attendees included leaders and visionaries in their respective areas of autism, developmental disabilities and mental health awareness, services and science. The vast majority were established friends and partners of Autism Speaks. They included members of GAPH as well as our Advocacy Leadership Network. The came from Albania, Bangladesh, Ethiopia, India, Japan, the Philippines, Panama, Peru, Qatar, Sri Lanka, and South Africa. The WHO heard their voices loud and clear.
On Day 3 of our consultations, we agreed that, as a global community, we will use the recently enacted autism resolutions of the United Nationals General Assembly and the World Health Assembly Executive Board to increase the commitment and accountability of governments worldwide. (Follow the links for more information on each resolution.)

Thursday, September 19, 2013

California's Exchange

The Covered California health benefit exchange board today is expected to reverse a policy that required all family members to join the exchange together, and that move is being hailed by autism advocates. They say a vital type of autism treatment now will be affordable for more California families.
Many families in California cannot afford to pay for applied behavior analysis (ABA) therapy, except through health insurance, according to Karen Fessel, executive director of the Autism Health Insurance Project, a not-for-profit autism advocacy group.
"Basically ABA therapy's unaffordable when it's not covered," Fessel said.
Since it's included as one of the essential health benefits for all Covered California policies, that makes it especially appealing for families with autistic children.
But until now, Covered California officials were insisting that everyone in a subsidy-eligible family had to sign up for same policy.
Today, when the Covered California board meets in Sacramento, there's a nondescript agenda item called "Eligibility and Enrollment Regulations," and the change in policy is expected to be included in that presentation.

Wednesday, September 18, 2013

ABA Fight in Oregon

Autism advocates presented their case for applied behavior analysis last week to an Oregon evidence-based medicine review panel, whose recommendation can make or break the ability of autistic Oregonians to receive the therapy under the Oregon Health Plan.

The approval faces a high hurdle: a staff member for the Center for Evidence-Based Policy at Oregon Health & Science University, Dr. Alison Little, has testified nationally against the psychotherapy for autistic children, including a Florida case in March 2012.

She testified on behalf of Florida’s Medicaid program, which had denied coverage for ABA. But in a sharp ruling, U.S. District Court Judge Joan Lenard in Miami immediately ordered the state to begin coverage for people up to 21, calling the state’s opposition to ABA “unreasonable and arbitrary and capricious.”

Little advises the subcommittee for Oregon’s Health Evidence Review Commission, which will recommend whether the state will cover applied behavior analysis for the nearly 400,000 children on the Oregon Health Plan.

A previous panel rejected applied behavior analysis coverage for the Oregon Health Plan in 2008, but this time, a strong appeal from the Legislature, led by osteopathic physician and Sen. Alan Bates, D-Medford, has forced the panel and its parent body, the Health Evidence Review Commission to reconsider.

The Legislature unanimously passed SB 365 into law, requiring all private health insurance companies to cover ABA for kids up to 9 by 2016, as well as health plans for public employees and teachers by 2015. The law keeps the door open for older children if a specialist approves the therapy.

But for the 44 percent of Oregon children on the Oregon Health Plan, the decision rests with the evidence commission, which will decide whether to recommend the therapy for its prioritized list of health services.

Tuesday, September 17, 2013

College Programs

"I knew I didn't want to work in the fast food industry my whole life," [Tony] Saylor said, sitting at the kitchen table of his family's home in this Detroit suburb, where he lives while commuting to EMU [Eastern Michigan University]. His mother, Angela Saylor, says a 3-year-old program at EMU that supports autistic students – a graduate student who works with the program attends all his classes with him – has been a godsend.
Such programs within traditional universities, offering supplemental support for additional tuition, are sprouting up around the country (Nova Southeastern University in Florida is among the schools starting one this fall). "The K&W Guide to College Programs for Students With Learning Disabilities or AD/HD" has grown steadily since its precursor was first published in 1991, and now lists 362 programs, the majority of them now comprehensive services.
Meanwhile, other parts of the landscape are also expanding. College disability service offices (whose help is usually free) are also improving. Care centers, often for-profit and unaffiliated with colleges, are popping up near campuses and offering supplementary support. Finally, institutions with a history of serving large numbers of students with learning disabilities are growing, some adding 4-year degrees.
"This is the best time ever for students who learn differently to go to college," said Brent Betit, a co-founder of Landmark College in Vermont, which opened in 1985 with a then-unique focus on such students and now has a range of competitors. Among those Betit mentioned: programs within the University of Arizona and Lynn University in Florida, plus Beacon College, also in Florida, which like Landmark has a comprehensive focus on students with disabilities.
These highly personalized services are expensive. Unlike in K-12, there's no legal right to a free college education for disabled students. So far, the expanded options mostly benefit those who can afford to pay out of pocket.

Monday, September 16, 2013

Deaths in Santa Ana

The Daily Mail reports:
A suicidal mother has been charged with murder for killing both her children before a failed suicide attempt Saturday morning.

Marilyn Edge, 42, of Scottsdale, AZ., tried taking her own life in a car accident in Costa Mesa, CA before telling responding cops they would be able to find her 13-year-old autistic son Jaelen Edge and 10-year-old daughter Faith in a nearby hotel room. The young childrens' bodies were discovered just after 8:30am at a Hampton Inn in Santa Ana.

The cause of death for both children has not yet been made public, nor have their causes of death. Their identities have been revealed by MailOnline. Ms Edge previously sued the federal government alleging her son developed autism after a vaccination.
Many autism activists may object to the next line, about what may have "driven" the suspect.
It is not clear what brought the doomed trio to the California town, about 40 miles south of Los Angeles, but a review of court records by MailOnline is starting to piece together part of what may have driven Ms Edge to Saturday's tragic events.
The doting mother sued the Secretary of Health and Human Services in 2004, alleging a vaccination gave her son autism, court records showed. The case was dismissed only last year.
Citing a lack of medical records supporting Ms Edge's claim, and the lack of a valid medical opinion to further bolster it, Chief Special Master Patricia Campbell-Smith dismissed the suit for 'insufficient proof.'
Ms Edge was awarded a judgement in the amount of $7,692 to settle legal fees owed for the suit. It is not clear if or when she ever received that money.
"I think there certainly is a divide, and there has been for some time," said Ari Ne'eman, president of the Autistic Self Advocacy Network in Washington, D.C. “The picture of autism that has been presented in the public eye is not consistent with how we see ourselves."

He said recent murder and attempted murder of autistic children “are the quintessential example of that.”

Autistic people deserve the same protection under law, he said, and “we are profoundly concerned when groups try to present murder as justified or understandable on the basis of the victim’s disability.”

Sunday, September 15, 2013

Rhode Island Registry

Previous posts have discussed autism registriesThe Brown Daily Herald reports:
University scientists are key players in a new program aiming to advance autism research by creating a statewide registry of patients who have been diagnosed as on the spectrum. Spearheaded by the Rhode Island Consortium of Autism Research and Treatment, also known as RI-CART, the program gained funding through a variety of sources, including two recent grants totaling over $1 million.
RI-CART’s mission is to “improve the lives of Rhode Islanders with autism spectrum disorders by promoting collaborative, cutting-edge research, improving health care and support services and providing data-driven education and advocacy,” according to the organization’s website. The 14-member organization, including Brown University and Bradley Hospital, comprise an interdisciplinary group of researchers, physicians and educators.
RI-CART currently has its sights set on creating a statewide registry of autism patients which researchers could use to learn more about the neurologic disorder, said Stephen Sheinkopf, co-director of RI-CART and assistant professor of psychiatry and human behavior and pediatrics.
The registry will include patients’ demographic information, medical history, official diagnosis, severity of symptoms and even information biological samples, said Sheinkopf, whose research focuses on the early identification of autism in children.

Saturday, September 14, 2013

ABA, Ohio, and Federal Action

The U.S. Department of Education told state officials in a letter last week that applied behavior analysis, also known as ABA therapy, must be made available to any child who is considered a good candidate to receive it.

“This is huge,” said Richard Ganulin, a Cincinnati lawyer who has fought for wider availability of the treatment. “The U.S. government has ordered the state of Ohio to fix what it’s been doing wrong.”

The order comes as state officials continue to fight in federal court with a Clermont County couple over whether federal law requires Ohio to provide the treatment, which some parents of autistic children believe is the most effective care available.

Holly and Robert Young sued the state last year after the Ohio Department of Health refused to provide ABA therapy for their son, Roman, through the state’s “Help Me Grow” program. They said their son, now 3, thrived in the therapy and regressed without it.

U.S. District Judge Michael Barrett ordered the treatment program reinstated for Roman until his third birthday, at which time his local school district assumed responsibility for providing it.
Autism Speaks reports:
The letter noted that "the department is monitoring the litigation in Ohio,"... The Autism Speaks Legal Resource Center has assisted the plaintiffs in the case.
Help Me Grow is Ohio’s birth-to-three program that provides state and federal funding to Ohio's 88 county Family and Children First Councils. The county agencies provide home visitation services for expectant parents, newborns, infants and toddlers up to age three who have or at risk for developmental delays or disabilities, as well as other populations. The program is administered by the state health department's Bureau of Early Intervention Services.

Friday, September 13, 2013

Appeals Court Ruling on Insurance in CA

A therapy for children with autism must be covered by public insurance companies, a California appeals court has ruled. Applied Behavior Analysis — or ABA — “is a system in which every moment and action by the child is monitored and rewarded by the therapist on a one-to-one relationship for periods of 35, 40 hours a week,” plaintiffs’ attorney Fred Woocher said. The case, brought by Consumer Watchdog and Strumwasser & Woocher LLP, sought to extend insurance coverage for the treatment to families with public health insurance. Insurers often deny claims involving applied behavior analysis, according to the lawsuit.

You may find more detail in a press release from Consumer Watchdog:
In a complex opinion issued yesterday, the California Court of Appeal ended the Department of Managed Health Care's (DMHC) discriminatory practice of allowing HMOs to deny treatment for autistic children of state employees and low-income families enrolled in the Healthy Families program on the basis that such treatment can only be administered through state-licensed providers.
The case was brought by the non-profit Consumer Watchdog and Strumwasser & Woocher LLP.
The treatment at issue, known as Applied Behavioral Analysis (ABA), has been found to be the most effective treatment for autistic children, as yesterday's opinion acknowledged. After the lawsuit was filed, the California Legislature agreed with Consumer Watchdog by passing a law in 2011 clarifying that HMOs and health insurers must provide coverage for ABA for children enrolled in private health insurance plans and that such treatment could be provided through providers who are certified by a national board, but not state-licensed. However, the Legislature did not include public employees and Healthy Families enrollees.
The remaining issue to be decided by the Court of Appeal was whether the DMHC could allow HMOs to deny ABA for children enrolled in public health plans if an ABA provider does not hold a state license. As Consumer Watchdog and Strumwasser & Woocher LLP pointed out in the lawsuit, no state licensing currently exists for ABA therapists.  [emphasis added]
The Court of Appeal agreed with Consumer Watchdog and Strumwasser & Woocher LLP, stating that the "DMHC cannot uphold a denial of coverage for ABA. . . on the basis that the therapist is unlicensed, even when the plan is exempted from the requirements of the ABA statute."
Read a letter from public employee unions, including the California Profession Firefighters, urging Governor Brown to end the DMHC's discriminatory rule now barred by the court decision:

The case, Consumer Watchdog et al v. Department of Managed Health Care et al (2d Civ. No. B232338), was decided by a panel of three judges in Division 3 of the California Court of Appeal's Second District, which included Justices Klein, Croskey, Kitching.

Thursday, September 12, 2013

Questions About Transition Programs

A report  from the National Center for Education Evaluation and Regional Assistance at the U.S. Department of Education’s Institute of Education Sciences finds little good evidence about the effectiveness of transition programs.  From the executive summary:
Nearly four decades have passed since the Individuals with Disabilities Education Act (IDEA) ensured access to public education for students with disabilities in the United States. During the years following its adoption, there was growing recognition that to lead productive and fulfilling lives as adults, many students need support in the transition from secondary school to post-high school environments. As a result, several reauthorizations of IDEA have emphasized transition planning in helping students with disabilities to obtain employment, pursue postsecondary education and training, and live more independently.
Despite the efforts of policymakers and practitioners, a gap remains between post-high school outcomes of students with disabilities and outcomes for other students. To help close that gap, this report reviews the research literature on programs (strategies, interventions, or sets of services) designed to help students with disabilities make transitions.
It deviates in the following ways from previous evidence reviews on this topic (for example, Cobb and Alwell 2009; Test et al. 2009):
• It updates earlier reviews by including studies publicly released between April 2008 and June 2011.
• It reviews studies using the standards and process developed by the Institute of Education Sciences (IES) What Works Clearinghouse (WWC).
• It focuses on direct measures of students’ post-high school outcomes as evidence of a program’s effectiveness. Applying the WWC standards and procedures meant that we did not include some types of studies that were included in previous reviews.
These criteria focus the evidence review on research results in which we are most confident, and that can best help us identify programs that are likely to improve the post-high school outcomes of students.

Our review of transition research studies from the past two decades indicates that relatively few studies meet the WWC standards for credible evidence of effectiveness. Based on the 16 studies that met WWC standards, the review rated the effectiveness of programs designed to help students with disabilities make transitions to post-high school employment, postsecondary education, and independent living. Community-based work-experience programs were found to have mixed effects on employment outcomes based on a medium-to-large extent of evidence. These programs were found to have potentially positive effects on postsecondary education outcomes, although the extent of evidence was small. Functional life-skills development programs were found to have potentially positive effects on independent living outcomes. But, again, the extent of evidence was small. On the whole, evidence across eight program categories allowed us to review only two of the categories, providing little support from high-quality intervention research for identifying a range of programs to help students with disabilities make successful transitions to employment, postsecondary education and training, or independent living.
Cobb, B., and Alwell, M. (2009). Transition planning/coordinating interventions for youth with disabilities: a systematic review. Career Development for Exceptional Individuals, 32(2), 70–81.
Test, D.W., Mazzotti, V.L., Mustian, A.L., Fowler, C.H., Kortering, L., and Kohler, P. (2009). Evidence-based secondary transition predictors for improving postschool outcomes for students with disabilities. Career Development for Exceptional Individuals, 32(3), 160–181.

Wednesday, September 11, 2013

Driver Licenses

In Fitchburg, MA, the Sentinel & Enterprise reports:
Having dealt with special-needs student in the Narragansett Regional School District for years, Carla Charter knows that being diagnosed with an autism-spectrum disorder shouldn't be a proverbial death sentence.
With a bill being presented to Statehouse lawmakers Tuesday, Charter and Rep. Denise Andrews, D-Orange, hope to make the roadways safer for drivers on the autism spectrum and police officers who may pull them over.
"Most people, even those educated on the subject, can't tell if someone is autistic or has Asperger's syndrome right away," Charter said Sunday. "Even an officer educated on the topic couldn't tell if someone was on the autistic spectrum if they pulled them over at 3 in the morning. If something comes across as odd to an officer, things could escalate."
Charter noted that people dealing with autism-spectrum disorders often can have a tough time with social interactions. Some may answer questions with an honesty not seen as disarming, some may not be able to make eye contact and others may have issues with people -- including police officers -- getting in their personal space.
"Someone with social-interaction issues might do something that would cause a police officer to think something was wrong," Charter said. "We're hoping to lower the chances of something bad coming out of it. The bill would increase safety for everyone involved."
The bill would put into effect a special designation on a license that would alert dispatchers that the carrier has an autism-spectrum diagnosis. The placing of such a designation would be completely voluntary, Charter said.

Tuesday, September 10, 2013

Autism and a Death Penalty Case

Death row inmate David Allen Raley on Monday asked a Santa Clara County judge to fire the court-appointed lawyers arguing that he should be spared execution because he is mentally retarded.
But it appears Raley's defense team will be allowed to press forward with the legal argument, whether the condemned killer likes it or not.
After clearing the courtroom to hear from Raley, Superior Court Judge Linda Clark, without commenting on the representation issue, moved forward with a special hearing to determine if Raley should be given a reprieve under a 2002 U.S. Supreme Court ruling that bars the execution of the mentally retarded.
The California Supreme Court has ordered Clark to hold hearings and make recommendations on Raley's claims that he is autistic and therefore falls under the protections of the Supreme Court's bar on executing the mentally retarded.
As readers of this blog know well, autism and intellectual disability are two entirely different things.  Yet there is language in the Atkins majority opinion that lawyers could adapt to this case:
As discussed above, clinical definitions of mental retardation require not only subaverage intellectual functioning, but also significant limitations in adaptive skills such as communication, self-care, and self-direction that became manifest before age 18. Mentally retarded persons frequently know the difference between right and wrong and are competent to stand trial. Because of their impairments, however, by definition they have diminished capacities to understand and process information, to communicate, to abstract from mistakes and learn from experience, to engage in logical reasoning, to control impulses, and to understand the reactions of others.23 There is no evidence that they are more likely to engage in criminal conduct than others, but there is abundant evidence that they often act on impulse rather than pursuant to a premeditated plan, and that in group settings they are followers rather than leaders.24 Their deficiencies do not warrant an exemption from criminal sanctions, but they do diminish their personal culpability.

Monday, September 9, 2013

Attempted Murder in Michigan

Previous posts have described instances in which parents have tried to kill their autistic children. In Michigan, MLive reports:
As national outlets such as People Magazine and Huffington post report on the story of a Michigan woman charged with attempted murder of her autistic daughter, a Kalamazoo man is pushing for federal charges against the mother, Kelli Stapleton.

"United States Department of Justice: Charge Mother who tried to Murder Autistic Child with Federal Hate Crime" urges the online petition by Zachary Lassiter of Kalamazoo, who has been a member of the Autistic Self Advocacy Network's Chicago chapter since its formation in June, 2012, according to his profile on that group's website.
The Autistic Self Advocacy Network is a nonprofit organization "run by and for Autistic people," and its slogan, posted on its website, is "Nothing about us without us."
Stapleton, 45, who has written extensively of her experiences with her 14-year-old daughter, Issy, in a blog, "The Status Woe," was ordered held without bond at her arraignment Thursday, Sept. 5 after she allegedly tried to kill her autistic teen-aged daughter and herself in a van filled with carbon monoxide last week.

Sunday, September 8, 2013

Autistic Adults in Michigan

A report this year by the state Department of Community Health called for the creation of a state resource center for adults. Nearly half of parents of austistic individuals ages 13 to 25 said they needed better access to higher education and employment services to supplement programs offered to public schoolchildren, according to the report.
“As you go along the lifespan, there’s tons and tons of programs for kids and then as you get older, there are less and less,” said Kathy Johnson, president of the board of the Autism Society of Michigan. “They still need the same kind of support, but there’s a gap for teens and another gap for adults.”

There has been a shift lately toward greater emphasis on working with people on the spectrum to try to prepare them for the workplace. Michelle Soto, president of the Bloomfield Hills-based nonprofit Wish Upon a Teen, says her organization offers opportunities for teens and young adults to learn social and technical skills that would lead to jobs.
On the education side, Michigan has few programs for young adults. For the past eight years, Oakland University has had a program called OUCARES to assist students with autism, while Eastern Michigan University’s Autism Collaborative Center developed its program five years ago.
Even as programs and services grow, many can’t get the assistance they need, said Kathy Sweeney, director of OUCARES.
“The gap is probably getting wider in that more and more individuals are getting diagnosed with autism,” she said. “This is a community issue, and we need to make it a more autism-friendly community.”
But training and teaching skills is only one part of the equation, says Cindy Burdi, an employment development coordinator with the Macomb Oakland Regional Center. A bigger challenge is overcoming the hesitation some employers may have about hiring a person with disabilities.
Burdi’s center provides job coaches for employers to help those with autism perform work. She even goes to job interviews to help clarify employers’ questions for her clients.
“One of the biggest things is employers are afraid of the adjustments they might have to make and they don’t realize they’re very minor things. They’re nervous to employ someone,” Burdi said.

Saturday, September 7, 2013

Abuse of the Disabled

The Disability and Abuse Project today released a report that gives low grades to state and local agencies for failing to respond adequately to widespread abuse of children and adults with disabilities.

The Report -- "Abuse of People with Disabilities: Victims and Their Families Speak Out" -- analyzes the results of what may be the largest survey of its kind in the nation. More than 7,200 people took the survey which inquired into the experiences of people with disabilities as victims of abuse and bullying. Family members, advocates, service providers and various types of professionals also responded.

Over 70% of people with disabilities said they had been victims of abuse. More than 50% of these victims had experienced physical abuse, with some 41% having been victims of sexual abuse. Nearly 9 of 10 respondents with disabilities had suffered verbal or emotional abuse. Most victims said they had experienced abuse on more than 20 occasions.
Some autism-specific findings:

  • Some disability types had a higher incidence of abuse than others. For example, 74.8% of people with mental health conditions reported they had been victims of abuse, while 67.1% of those with a speech disability, 66.5% of those with autism, 62.5% of those with an intellectual or developmental disability, and 55.2% of those with a mobility disability reported having experienced such abuse.
  • The rate of sexual abuse varied greatly among victims depending on the type of disabilities they had. Some 47.4% of people with mental health conditions reported they had been victims of sexual abuse, whereas 34.2% of those with intellectual or developmental disabilities, 31.6% of those with a mobility disability, and 24.9% of those with autism reported they had experienced sexual abuse.
  • The rate of victimization reported by various disability communities (defined as people with disabilities or pwd and families) was rather consistent, with the following victim types reporting they had been abused 10 or more times: mental health (59.4%), mobility (45.7%), autism (44.3%), speech (43.8%), and I/DD (39.9%).
  • The rate of reporting varied among specific “disability communities” (pwd and families). Some 55.4% of victims with autism reported abuse, while 52.8% of those with a speech disability, 44.2% of those with a mental health condition, and 39.5% of those with a mobility disability did so.
  • People with autism and people with mental health conditions were victims of bullying at a significantly higher rate than people with other types of disabilities. The following are the rates of bullying reported by various disability communities (pwd and families): autism (77%), mental health (74.7%), speech (66.8%), I/DD (64.3%), and mobility (55%).

Giving Up a Son to the Government Care: Update

An earlier post discussed a Canadian woman who left her adult son in the care of the government.  CTV has an update:
The mother of a man with severe autistism says she still feels the guilt of leaving her son, out of desperation, at a government office. But Amanda Telford knows in her heart it was the right thing to do.
CTV News first told you about this story five months ago. Today, CTV News caught up with Amanda and her 20-year-old son Philippe once again to find out where life has taken them.
Her story captured the nation's attention for weeks and shone a spotlight on the desperation that many parents of children with autism are feeling . Now, Telford’s son has a temporary place to stay and a grassroots movement is forming to push for a Family Bill of Rights.
“We struggle with a lot of guilt over what we felt we had to do and a lot of anger over what we were compelled to do,” says Telford, outside the east-end Ottawa school her son attends. The stress lines are almost gone from her face. Twenty years of caring, round the clock, for her severely autistic son had taken a toll on Telford and her family. But last April, out of desperation, she made a heart-wrenching and very public decision. Telford, who is a social worker, left Philippe at government office for adults with developmental disabilities.

Friday, September 6, 2013

Controversial TV Report on a Murder


From Left Brain/Right Brain:
The Thinking Person’s Guide to Autism started a 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
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
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.
Emily Willingham writes:
I strongly urge readers to review what is knownabout this case and to take note of those who were involved when Alex was not receiving the help heneeded.CBS has covered this story in a controversial report [I am a volunteer editor at the site that sponsored the mentioned petition] involving Sharyl Attkisson, whose views regarding vaccines and autism have previously come through in her reportage. The CBS coverage seems to imply that somehow, society’s failure to support this mother led her to brutally murder her son by stabbing him four times in the chest.
What society failed to do that led the godmother to be party to the murder remains unclear.
It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “ kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the “monster.”

Thursday, September 5, 2013

Inequality in California

At The California Health Report, Heather Tirado Gilligan and Callie Shanafelt write:
California has approached the question of whether or not to mandate coverage of the intensive, expensive therapy in an especially curious way. The state mandates that all private insurance policies cover evidence-based autism treatment, including ABA. But California exempts Medi-Cal from that requirement. As a result, families with private coverage get ABA for their autistic children. But most of those who are low-income and covered by public insurance do not.

The California Department of Health Care Services, which declined to be interviewed for this article, provided a statement saying that ABA is covered by services offered to the disabled at regional centers. The centers are tasked with helping adults and children with disabilities.

Most autistic children, however, don’t qualify for ABA at regional centers, advocates say. “The problem with the regional center is that you have to have a certain level of disability to qualify,” [Karen] Fessel says. That level of disability, she adds, is profound. “If you don’t qualify, you’re basically hosed.” She estimates that 500 low-income families have already had treatment for their autistic children disrupted since the switch from Healthy Families to Medi-Cal.

For families with autistic children, fighting for benefits is par for the course. Fessel, for instance, founded the Autism Health Insurance Project after her own difficulties getting her insurance policy to cover treatment for her son, who has Asperger’s syndrome.


Fessel finds it difficult to understand the logic of a law requiring therapies for some autistic children but not others. The legislation that mandated coverage for ABA, Fessel notes, recognized the need for therapy as urgent while excluding a population of kids on Medi-Cal. “How can it be urgent for people with money,” she asks, “and not urgent for people without money?”

In the same publication, Robin Urevich writes:
A group called Concerned Parents Association of California says school districts routinely discriminate against kids with disabilities, while the state agency charged with enforcing the IDEA, the California Department of Education (CDE), looks the other way. The Concerned Parents Association, along with the Morgan Hill Concerned Parents Association, is suing the California Department of Education in federal court, saying the state’s special education system is in shambles and out of compliance with federal law in every way, beginning with its failure to stop segregation of disabled kids.
[T]he Concerned Parents lawsuit alleges that school districts routinely fail to include parents in IEP meetings, and fail to provide the support services their children need to learn. Rony Sagy, the lead attorney for the plaintiffs, says general education teachers are overwhelmed and lack the training they need to educate disabled and typical kids in the same classroom. “As a result, they say we can’t deal with it. Kids with various disabilities are just warehoused in classes or programs that do little to improve their education results.”
The article updates a story that has appeared on this blog:
In Sierra Madre, the Brandenburgs embarked on an ultimately successful battle to keep Gabe in Sierra Madre Elementary, and prove he was wronged, an ongoing effort they say has taken over their lives and drained their finances.

Now, Gabe is in fourth grade—in a general education classroom—and is considered a gifted student, with a teacher who cares about him, his mother says. The Brandenburgs say they’re still pushing to get Gabe what he needs to learn—he doesn’t have a current IEP or behavior plan.

Mary, who attends school with him in the morning, picks up the slack. She’s coached him to tell his teachers how he feels when he’s frustrated, and she’s taught him a strategy to help him understand complicated instructions. Now when the 10-year-old needs time to process what he’s heard, he turns to his teacher and asks, “Can I have a moment?”

Life is calmer for Gabe, but Tony Brandenburg says the ordeal has taken a toll. “We’re not the same family we were in 2009. They’ve taken his childhood and he’ll never get that back.”

Wednesday, September 4, 2013

Young Adults and Independent Living: Depressing Data

In Autism, Kristy A. Anderson, Paul T. Shattuck and colleagues have an article titled "Prevalence and Correlates of  Postsecondary Residential Status Among Young Adults with an Autism Spectrum Disorder."

The abstract:
This study examined the prevalence and correlates of three living arrangements (with a parent or guardian, independently or with a roommate, or in a supervised setting) among a nationally representative sample of postsecondary young adults with an autism spectrum disorder. We assessed living arrangements since leaving high school. Compared with young adults with other disability types (learning disabilities, intellectual disabilities, or emotional disturbances), those with an autism spectrum disorder were more likely to have lived with a parent or guardian and least likely ever to have lived independently since leaving high school. Members of the autism spectrum disorder group were less likely to have ever lived elsewhere and more likely to live under supervision since leaving high school compared to persons with emotional disturbances and learning disabilities. Group differences persisted after controlling for functional ability and demographic characteristics. Correlates of residential independence included being White, having better conversation ability and functional skills, and having a higher household income. Further research is needed to investigate how these residential trends relate to the quality of life among families and young adults.
From the text of the study:
Compared with the other disability categories, young adults with an ASD were significantly more likely to have ever lived with a parent or guardian (87.1%) and less likely to have ever lived independently (16.6%) since leaving high school (Table 2). Also, young adults with an ASD experienced the highest rates of postsecondary residential continuity (79.1%). In follow-up analyses not shown in tables, we found no independent living among young adults with ASD who had been out of high school for 2 years or less at the time of the survey. In contrast, the comparable rate was 22.2% for youth in the MR group.

Tuesday, September 3, 2013

Testing a Drug

Although some medications may help with the co-occurring conditions of autism (e.g., anxiety), there is no drug for autism itself. The Boston Globe reports on tests of a medication that might alleviate some symptoms of autism:
Researchers frequently use diseases that involve simple, clear gene mutations, like the ones in tuberous sclerosis, to better understand more complex conditions such as autism that involve hundreds of genes. Because so many genes underlie the disorder, “one pessimistic point of view would be that you’d need 500 different drugs to help individuals with autism,” said Dr. Mustafa Sahin, who is leading the trial at Boston Children’s. “But maybe, these 500 genes converge on certain common pathways and they can be rescued by common drugs.”
Autism advocates are cautiously optimistic that rapamycin, the medication Sahin’s team is testing, will be that common drug. “I keep my fingers crossed,” said Daniel Smith, senior director of discovery neuroscience at the research and advocacy organization Autism Speaks, which helped fund the research.
In the study, 50 children with tuberous sclerosis are taking rapamycin — used for decades to prevent rejection of transplanted organs — or a placebo for six months. The goal is to combat symptoms of the disease. Roughly one-third of tuberous sclerosis patients develop epilepsy, particularly in early childhood, so researchers also hope to learn more about that condition, Sahin said.