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Tuesday, February 20, 2018

Trump Budget Cuts

 In The Politics of Autism, I discuss the political aspects of science and public health. Many posts havediscussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on scienceand disability issues more generally.

The Autism Society analyzes the Trump budget's impact on disability programs. It is mostly negative.

Monday, February 19, 2018

Bleach and Autism

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.

WDBJ in Indianapolis:
An Indianapolis father accused his wife of feeding their child bleach to help cure her autism, according to a recent police report.
The report says the mother was putting drops of hydrochloric acid and water purifying solution (which contains chlorine) in her child’s drink. The man says his wife told him she read about the mixture online in a Facebook group. The mother reportedly identified the mixture as the "miracle mineral solution.”
According to IMPD, the Department of Child Services is currently investigating the case and has removed the child from the home.
The miracle mineral solution claims to be a cure-all for anything ranging from cancer to hepatitis and even aids. However, health officials, including the FDA, have warned the product is little more than bleach.
Officials at the Applied Behavioral Center for Autism say it’s common for parents to search for home remedies to cure autism.
“Taking things into their own hands is something that many parents have done out of desperation, out of hope,” president and founder Sherry Quinn said.
Abby Haglage at Yahoo:
Myths abound in the autism world — and, thanks to the internet, those myths travel.
Whether it’s a company touting concentrated oxygen chambers as a cure or a doctor erroneously claiming the condition is caused by vaccines, the many misconceptions about autism cater to parents who are desperate for answers. At best, they muddy the truth about the developmental disorder that affects one in 68 kids nationwide. At worst, they put those kids in danger.
That’s what happened most recently in Indiana, when a mom allegedly gave her daughter drops of a “bleach-like” concoction that she read online was a “cure” for autism. According to local Fox news, the unnamed mother told her husband she got the idea from “a Facebook group” that referred to the liquid as the “miracle mineral solution” or MMS.
...
This “miracle mineral solution” is a myth that has existed for some time; it pops up regularly in online antivaccination discussions. For instance, MMS interpreted as “master mineral solution” is favored by a woman named Kerri Rivera, a controversial Chicago native who now runs a nonprofit clinic in Latin America that purports to “cure” autism. In 2012 at a yearly conference called Autism One, Rivera announced MMS as the “missing piece to the autism puzzle,” one that she claims allowed “38 children to recover in 20 months.” Her website now claims that MMS has cured 235 children, as of October 2016.

Sunday, February 18, 2018

TRICARE is FUBAR

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. The challenges are especially great for military families.

Many posts have discussed Tricare  a health care program of the Department of Defense Military Health System.  It Tricare provides civilian health benefits for military personnel, military retirees, and their dependents. Military autism families depend on it.

Dianna Cahn at Stars and Stripes:
Across the country, parents and providers say they are facing overwhelming obstacles to sustaining services under Tricare following the Jan. 1 reorganization that included merging Tricare East and Tricare South and changing out contracts for Tricare East and West.

Servicemembers and family members have reported difficulties connecting to online systems and hourslong waits to speak to customer service. Parents and providers said they learned more from each other in online forums than from attempts to reach their insurance representatives.

Meanwhile, providers say reimbursements are patchy; they are slow to be approved; many providers are being reimbursed at rates of less qualified professionals; and the management companies – Humana Military in Tricare East and HealthNet in Tricare West – are slow to correct errors or address problems.

The Defense Health Agency says it is aware of the problems, particularly in Tricare East, and it has established a joint DHA/Humana Autism Task Force to resolve issues. It also says many of the problems have been corrected or are being resolved. But providers say that while claims that do go through without error are being processed more quickly, many of the issues still persist – including frequent errors in processing, payment rates and full reimbursements.

Saturday, February 17, 2018

Judge Rules That Endrew F's Family Should Get Reimbursement

In The Politics of Autism, I write about IEPs and FAPE.

John Aguilar at The Denver Post:
A federal judge on Monday ruled that the Douglas County School District did not provide an adequate education to a student who has autism and must reimburse his family for the cost of sending him to a private school for students with disabilities.
The ruling from U.S. District Judge Lewis Babcock represents the latest, and possibly final, chapter in a long-running legal battle between the family of a student known in court records as Endrew F. and the 68,000-student school district that went all the way to the U.S. Supreme Court.
In a unanimous ruling last year, the high court stated that federal law requires public schools to offer special education programs that meet a higher standard than simply the bare minimum. Chief Justice John Roberts wrote in the March 2017 opinion that federal law requires an educational program be “reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.”
The high court didn’t say whether Douglas County had reached that bar with the individualized educational program it offered Endrew and remanded the case back to the district court to make that determination.
Babcock reasoned that once the Supreme Court elevated the previous standard of a “de minimis” — or minimum — approach to special needs education to a higher standard of “markedly more demanding,” Douglas County’s efforts to provide Endrew with a special needs curriculum had been insufficient. He said the district is on the hook for the student’s private tuition.

Thursday, February 15, 2018

House Votes Today on Bill to Weaken ADA

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

David M. Perry at Pacific Standard:
On Thursday, February 15th, the Republican caucus and at least some Democrats in the House of Representatives are likely to vote to make the Americans With Disabilities Act (ADA) functionally optional when it comes to businesses. Propelled by years of lobbying by a group that represents shopping malls, the House will approve a new law that removes businesses' incentive to comply with the ADA. Disability activists unanimously argue that the bill will reverse nearly 30 years of progress, but the lobbying efforts of the International Council of Shopping Centers keep pushing it forward.
H.R. 620, the "ADA Education and Reform Act of 2017," restructures the enforcement mechanism for the ADA. The means of enforcement have always been unusual. Most regulations that affect commerce are enforced by local, state, and federal agencies. While there is a small division in the Department of Justice (DOJ) doing some oversight, the ADA generally depends on private citizens bringing complaints through damages-free lawsuits (though with legal fees attached) in order to command technical compliance in commercial spaces. Think about how this differs from most other regulatory situations. You aren't required to check whether the local restaurant complies with health codes, labor standards, or other safety features; the government does that for you. When it comes to disability, though, most enforcement starts with a personal lawsuit.
...
H.R. 620 works on two fronts. First, it demands that the federal government offer businesses more education about the ADA, while not providing additional funding to implement that education. In fact, the DOJ already provides such education. As we've covered at Pacific Standard, the Department of Justice has been rolling back guidance documents that clarify how the ADA works, so the best guess about H.R. 620's education statute is that it's a way to cut enforcement activity by making the DOJ spend more money on education.
The second front—notification—is more pernicious. Right now, businesses that are found to be non-compliant can be held immediately accountable. That seems fair, given that the ADA has been law for 28 years. Under the new bill, a person who encounters an accessibility obstacle would need to give a written, technical notification to the business (which often will require a lawyer to do correctly), wait 60 days for that notification to be acknowledged, and then wait 120 more days for "substantial progress" to be made in resolving the accessibility issue. If, after 180 days, there hasn't been substantial progress (it's not clear quite how that standard would be regulated), the disabled person who first encountered the accessibility obstacle can then sue. They still won't be able to collect damages.

Wednesday, February 14, 2018

ASAN Opposes Bill to Weaken ADA

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

ASAN Letter to House Leaders on H.R. 620
The Autistic Self Advocacy Network (ASAN), the nation’s leading 501(c)(3) disability rights advocacy organization by and for autistic people ourselves, strongly opposes H.R. 620, the “ADA Education and Reform Act of 2017.” H.R. 620 would curtail the civil rights of Americans with disabilities by making it prohibitively difficult for us to enforce our right to access public places under Title III of the Americans with Disabilities Act (ADA). By unnecessarily forcing people with disabilities to navigate complex red tape and wait for months before challenging access barriers, HR 620 would greatly reduce our access to the community and limit our ability to live full and independent lives. By forcing people with disabilities to hire lawyers to provide the required notices, H.R. 620 may also increase the total amount of ADA litigation.
H.R. 620 would require people with disabilities to file a complicated written notice to the owner of a public accommodation before they can file a legal complaint challenging an architectural barrier. The notice must describe the barrier, explain the exact way that the barrier has already prevented the person from gaining access, note whether the barrier was permanent or temporary, whether the person has already requested the removal of the barrier, and must even cite the specific provisions of the ADA that were violated. No other civil rights law requires such a notice. Requiring people who want to sue under a civil rights law to navigate additional procedural hurdles sets a dangerous precedent, which could lead to similar bills that curtail the enforcement of other civil rights laws, such as the Civil Rights Act of 1964. The notice requirement is also unduly burdensome and will chill legitimate claims, particularly for people with cognitive and developmental disabilities, who may have difficulty providing these details. Moreover, because it requires a citation to specific portions of the ADA, the law effectively forces people with disabilities to preemptively hire a lawyer in order to notify businesses of an ADA violation.
Following the receipt of a notice, the business owner would then have 60 full days to acknowledge receipt of the letter, and another 120 days to make “substantial progress” in eliminating the barrier. People with disabilities might be forced to wait up to four months to enforce our own civil rights, even if we need access to a particular business right away. This will make the ADA effectively unavailable to people with disabilities who wish to attend concerts, sports games, or other similar events on a specific date, to travelers with disabilities, and to people with disabilities who need to access a specific building as part of their job.
Additionally, H.R. 620’s letter requirements place the burden of educating businesses on ADA compliance on the person with a disability. The Americans with Disabilities Act has been law since July 26, 1990. Businesses have had 28 years to come into compliance with the ADA, and 28 years of ready access to the resources necessary to understand how to come into compliance. The Department of Justice and Regional ADA Centers already provide technical assistance, training, and resources on how to comply to businesses across the nation. Many disability rights organizations themselves offer webinars, training, and resources on how to create accessible businesses and public spaces. There is no justifiable reason, therefore, that a business should be out of compliance with the ADA, nor should people with disabilities have to wait even one day longer to take action against a business that is violating the law. We cannot, and should not, be expected to teach a business how to respect our rights.
H.R. 620 is being promoted by a small number of businesses who feel that they have been subjected to frivolous lawsuits. While frivolous lawsuits and unethical lawyers do exist in all legal fields, including disability rights, imposing onerous procedural requirements and a lengthy waiting period is unreasonable and ineffective as a deterrent. The ADA itself was constructed with an emphasis on reducing frivolous litigation. Only injunctive relief and attorney’s fees, rather than damages, are available for violations of Title III of the ADA. State and local laws, professional ethics rules, and the federal rules of civil procedure (such as Rule 11), additionally deter lawyers from submitting fraudulent or frivolous lawsuits.
Instead, since average citizens are less likely to be familiar with the procedural requirements, H.R. 620 is more likely to chill legitimate claims filed by people with disabilities ourselves. People with disabilities with legitimate claims often attempt to notify businesses and give them an opportunity to cure the violation prior to seeking out a lawyer. However, since few lay persons will be aware of the requirements of H.R. 620, those who made a good faith but unsuccessful effort to talk to the business owner will find that they must now provide another legal notice and wait another four months before they can file a complaint in court. This system encourages a person with a disability to hire a lawyer as soon as they experience an access denial, which may in fact increase the likelihood of litigation.
People with disabilities have been discriminated against and treated as second-class citizens for generations. H.R. 620 would undermine enforcement of critical legal protections. For this reason we urge Congress to oppose the passage of this legislation. For more information on the Autistic Self Advocacy Network and our opposition to H.R. 620, please contact Samantha Crane, our Director of Legal and Public Policy, at scrane@autisticadvocacy.org.
Sincerely,
Samantha CraneDirector of Legal and Public PolicyAutistic Self Advocacy Network

Tuesday, February 13, 2018

Food Boxes

In The Politics of Autism, I write:
Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.
Helena Bottemiller Evich reports at Politico:
The Trump administration is proposing to save billions in the coming years by giving low-income families a box of government-picked, nonperishable foods every month instead of food stamps.
White House OMB Director Mick Mulvaney on Monday hailed the idea as one that kept up with the modern era, calling it a "Blue Apron-type program" — a nod to the high-end meal kit delivery company that had one of the worst stock debuts in 2017 and has struggled to hold onto customers. Mulvaney said the administration’s planwould not only save the government money, but also provide people with more nutritious food than they have now.
...
The idea that USDA would provide millions of low-income people packages of food on a national scale has not been floated by conservative think tanks, promoted by industry, or sought by previous administrations. Murtaugh said the concept was developed internally at USDA. Mulvaney on Monday credited Perdue for it during a briefing at the White House.
"Secretary Perdue wanted to give it a chance," he said. "We thought it was a tremendous idea."
Numerous questions remain, such as how these boxes would be customized for, say, a family that has a child with nut allergies — or for those who don't eat certain types of meat out of religious or personal reasons. The proposal was so out of left field that some anti-hunger advocates initially thought it was a joke.
Autism presents another problem for such a scheme.  Some low-income families have autistic children.  Most autistic children have problems with food selectivity.  They not just "picky eaters" like many typically developing children. They cannot tolerate certain kinds of foods and often subsist on an extremely narrow diet. Marci Wheeler writes at Indiana University:
Many parents of children on the autism spectrum struggle with their child’s severe eating problems with little or no professional help. In part, this is simply due to the limited number of specialists dealing with eating and feeding disorders. Furthermore, within this limited number of specialists there are few that have much understanding and experience with children who have autism spectrum disorders. A frequently suggested strategy for many children with eating and feeding disorders involves withholding food until the child is hungry enough to eat. This approach has been shown to be dangerous and not appropriate for a child on the autism spectrum. Unfortunately, professionals as well as concerned family members and friends mistakenly blame parents of children with autism spectrum disorders for their child’s poor eating habits. Sometimes parents’ concerns are ignored and they are told not to worry since most children go through stages of picky eating and food fads.
 The Trump scheme would mean that many of these kids would go hungry.

Monday, February 12, 2018

Up This Week: A Bill to Weaken ADA

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities

From the Autism Society
Next week the House of Representatives may consider a bill, the ADA Education and Reform Act (H.R. 620), that would severely weaken the Americans with Disabilities Act (ADA). H.R. 620 is a thinly veiled attempt to absolve businesses and organizations from complying with the ADA provision requiring access to public accommodations by shifting the burden to inform and educate to those whose rights are violated.
Please call your Representative today and the rest of this week and urge them to protect the rights of people with disabilities by voting NO on H.R. 620. Call the U.S. Capitol switchboard 202-224-3121 and ask for your Member of Congress.
Talking Points

HR 620 would do the following:
Eliminate the need for businesses and other entities that offer services to the public to meet accessibility requirements until a complaint is filed against them
Limit the ability to file a complaint unless it is in writing, specifies the exact part of the law that is being violated, whether the person complaining has made a direct complaint to the business, and whether the barrier or lack of access is permanent or temporary
The person with a disability must then wait up to 180 days for the business to “fix” the complaint; therefore denying the person with a disability access to the services for the waiting period
Also, a business could have more than 180 days to fix the complaint if they are making “substantial progress” to fix the complaint
This bill attacks the rights of people with disabilities because of “frivolous” law suits being brought by lawyers against businesses. This “problem” is about lawyers who are bad actors and should not be “solved” by gutting the rights of people with disabilities.
For more information and talking points, see the Consortium for Citizens with Disabilities’ ADA website.
Targets
California delegation
Illinois delegation
Florida delegation
Colorado delegation
Texas delegation
New Mexico delegation
Arizona delegation
Nevada delegation
Oregon delegation
Collin Peterson (D-MN)
Kurt Schrader (D-OR)
Zoe Lofgren (D-CA)
Mark DeSaulnier (D-CA)
Daniel Lipinski ( D-IL)
Ted Deutch (D-FL)
Jim Cooper (D-TN)
Jacky Rosen (D-NV)
Stephanie Murphy (D-FL)
Jared Polis (D-CO)
Dwight Evans (D-PA)
Mike Doyle (D-PA)
Kathleen Rice (D-NY)
Terri Sewell (D-AL)
Bill Foster (D-IL)
Jim Costa (D-CA)
Jackie Speier (D-CA)
Ami Bera (D-CA)
Luis Correa (D-CA)
Pete Aguilar (D-CA)
Scott Peters (D-CA)
Henry Cuellar (D-TX)
Kyrsten Sinema (D-AZ)

Sunday, February 11, 2018

Autism Acceptance in the Workplace

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.


Last April, 50 big-name companies -- including JP Morgan, Ford and Ernst &Young -- came together for a summit on how to bring more autistic adults into the workforce.
It was hosted at the Silicon Valley campus of German software maker SAP, which was one of the first large companies to reach out to the autistic community.
It started its Autism at Work Program almost five years ago, and since then it's hired 128 people on the spectrum, with the goal of hiring more than 600.
"I have been in this industry for close to 30 years, and I can tell you it's probably the single most rewarding program that I have been involved with," said Jose Velasco, who heads the program.
The biggest surprise for him, he says, has been the variety of candidates applying. "Very quickly we started getting resumes from people that had degrees in history, and literature in graphic design, attorneys … the whole gamut of jobs," Velasco said.
"So really, you went into this thinking that people with autism would be good at certain jobs, and what you ended up discovering is they're good at all jobs?" asked Cowan.
"They are good at just about every role."

Saturday, February 10, 2018

Milwaukee Official Screws Up on Vaccines and Autism

 In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Rebecca Klopf reports at WTMJ-TV in Milwaukee:
After she was criticized for stating the "science is still out" on the link between vaccines and autism on a radio show, Milwaukee interim health commissioner Patricia McManus, walked back her comments in a statement to the Milwaukee Common Council.

“My daughter received all of her immunizations as a child, and all of my grandchildren continue to do so as well. I do not question the science," McManus said in a prepared statement Friday. "I, as most public health professionals and doctors, believe that the best thing to do is to get immunized.”

McManus made the comments on the radio show The Forum on Thursday, saying, “I mean, there’s still people who believe it. And so I don’t know. I think the science is still out. I think that’s a decision that these families are going to have to make on their own at this point.”

"The information that is out there, especially from CDC they basically say there's been no way of knowing that there has been a linkage between autism and MMR," McManus also said.

A statement from CDC said the opposite: "All reputable scientific studies have found no relationship between MMR vaccine and autism."

Friday, February 9, 2018

Special Ed Directors Oppose Postponing a Rule on Racial Disparities

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

NASDSE recognizes and agrees with the overall concern related to disproportionality in special education. These concerns were behind the Department of Education's release of a regulation in December 2016 that laid out steps states were to take to identify and address this issue. NASDSE has learned that the Department of Education is postponing implementation of this regulation. States are moving forward to implement the regulation as it is currently written and NASDSE does not believe that implementation should be postponed from the current timeline contained in the regulation. At the same time, a number of states have questions/concerns regarding how the regulation addresses the calculation of disproportionality that we would like to see OSEP address. We hope that OSEP will work with NASDSE and the state directors of special education to address their concerns related to how disproportionality is calculated and identified so that true disproportionality can be addressed in meaningful ways.

Thursday, February 8, 2018

Autism and Title IX Reporting


College students on the spectrum face an unusually high risk of sexual assault.  There is a flip side:  misunderstandings that lead others to accuse them of sexual harassment. Lee Burdette Williams at Inside Higher Ed:
What are they not good at? Interpreting the subtle cues of social interactions, seeing the often fine line between wanted and unwanted attention -- flirty and creepy, appropriate and inappropriate. And that is what lands these students in a chair in the office of a Title IX investigator.
My advice to my former colleague was to coach her student to begin the conversation this way: “I have autism” (or Asperger’s, which is sometimes what students prefer to say). “It is a learning difference that sometimes makes it difficult for me to understand the implications of things that I say, or that others say to me. I’m sorry if my posters offended anyone, and I won’t do this kind of thing again.” I heard later from my former colleague that this is what he did, and the situation was resolved through the conversation with the investigator, with no further action required.
...
 Both of these streams -- Title IX-based reporting and the matriculation of students with autism -- will continue to grow. Colleges have a duty to the students they’ve admitted, especially students with known disabilities, to assure proper training and response. The Americans With Disabilities Act requires it.
But a student may exhibit autistic characteristics and lack a formal diagnosis. Or they might never have been told they have autism. Or they may know but choose not to disclose. A recent study of over 600 students at one institution showed that while just 10 first-year students disclosed a diagnosis of autism, 148 students reported they had enough autism-related characteristics to warrant a clinical assessment.
One could say that failing to disclose removes from the institution any responsibility to treat the student differently. But if certain characteristics and deficits may lead to a student being suspended or expelled, does it not seem incumbent on institutions to be certain they are fully capable of making such distinctions?

Wednesday, February 7, 2018

Education Department Stalls Rule on Special Ed Disparities

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

Brandi Buchman at Courthouse News:
A long delayed Obama-era rule intended to force states to address racial disparities in special education will now be postponed until 2020, the Education Department announced Monday.
In 2016, then-President Barack Obama instructed the department to review states which had disproportionate ratios of minority students flagged for special education services.
In a 41-page report, the department confirmed that minority students were more likely to be identified as having a disability, and more likely to face harsher discipline, than were their white classmates.
The report also revealed a prevalence of segregation in restrictive classroom settings and situations in which special needs students are removed from a standard classroom setting and placed into a more regimented or highly monitored one.
The rule directing states to intervene and address these disparities was set to go into effect in July 2018.
On Monday, the Education Department announced it would postpone enforcement of the rule for another two years because several officials had been told of “concerns” about the policy.
“Because of the concern raised, the department is looking closely at this rule and has determined that, while this review takes place, it is prudent to delay implementation for two years,” said Liz Hill, a department spokeswoman.

Tuesday, February 6, 2018

Buckeye Incident Update

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.  

Last fall, a police officer in Buckeye, Arizona, abused an autistic teen who was peacefully stimming in a public park.  

Laura Gomez at  The Arizona Republic:
The family of the teen with autism who was injured in Buckeye is seeking $5 million, according to a notice of claim filed with the city of Buckeye.
In a letter to Buckeye Police Department Chief Larry Hall last fall, the family's attorney questioned the officer's training.
"Given the ever-increasing prevalence of autism in today's society, this lack of training and guidance is deeply disturbing," the family said in the letter.
After the incident, the Buckeye Police Department held a mandatory autism awareness training for all personnel, according to the city.

The officer involved in the incident also underwent crisis intervention training that teaches de-escalation tactics when dealing with vulnerable populations, people with disabilities and those with a mental health diagnosis.
ABC15 in Arizona reports:



The notice of claim here. 

Monday, February 5, 2018

Medical Marijuana in Arizona

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage
These approaches sometimes include marijuana.

KSAZ in Phoenix:


Sunday, February 4, 2018

Support for Autistic College Students

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, for every student receiving special services, there are one or two on that same campus who have not come forward.
Sean Culkin, an autistic student from Rockville Centre, NY, struggled in college. Candice Ferrette reports at Newsday that he had greater success at Adelphi, which has academic, career, and social support services that boast a 96 percent retention rate.
About one-third of students on the autism spectrum go on to more schooling after high school, but about 80 percent drop out of their postsecondary education, said Dave Kearon of Hauppauge, director of adult services at Manhattan-based Autism Speaks, one of the largest autism advocacy organizations in the nation.
“There’s a very big difference in the services and support you receive in K to 12 and what’s offered in college,” said Kearon, referring to an individualized education program, commonly known as an IEP, that is developed for students in elementary and secondary schools. With an IEP, mandated by federal law, parents work with educators to provide special support to their students in the school.
“There is none of that kind of personal approach in college,” Kearon said. “The other thing is, it totally depends on the individual in college to self-advocate. That’s a huge burden, because by the definition of autism many people struggle with communication and social interaction and aren’t strong advocates for their own needs.”
Kearon said transition planning during the high school years to prepare for college is critical.
In addition to Adelphi, a handful of colleges across the country routinely show up on college ranking lists as being rated the best for students with autism, including Syracuse University; Defiance College and Kent State University, both in Ohio; Fairleigh Dickinson University in New Jersey; Drexel University in Philadelphia; the University of Michigan; and the University of Connecticut.

Saturday, February 3, 2018

Transition Research

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
Research on transition age youth and adults with autism is in its infancy. Less than 20% of all published autism research literature and about 2% of all autism research funding in the United States target these populations, and there are large deficits in related services (Interagency Autism Coordinating Committee, 2016; Government Accountability Office (GAO), 2015). Despite these challenges, there are many opportunities to capitalize on lessons learned from previous research in related areas. Opportunities for research on adults with autism will reach a new height over this next decade as the first large cohorts of children diagnosed with autism have now reached adulthood (Bishop-Fitzpatrick et al., 2017; Gerhardt and Lainer, 2011). The time is ripe for our research community to conduct effective and efficient research and swiftly translate research findings into services to improve the lives of this growing population.
Two large bodies of literature can guide investigators: (1) research on children with autism and (2) research with adults with other neurodevelopmental conditions, such as schizophrenia. Three key lessons learned from this literature could accelerate research for adults with autism. Our hope is that this editorial and the original research published in this special issue will provide examples and guidance in this area.
Lesson 1: Apply prevention and early intervention theories
One important lesson from previous research is that access to intervention services is vital to improved outcomes (Bryson et al., 2003; Hume et al., 2005). Our service system for children is developed to the point that some children receive early intervention as young as infancy. Adults with autism, on the other hand, find it extremely difficult to access appropriate services (GAO, 2017) and available services often dramatically decrease as they transition to adulthood. This extreme shift is often referred to as the “service cliff” (Roux et al., 2015). Existing services for adults frequently only enroll those with more significant needs such as intellectual disability, psychiatric disorders, or medical problems (Lorenc et al., 2017). Individuals with autism spend significantly more time of life within the adult service system compared to the child system. So why is there such a large discrepancy in research, interventions, and services across the life span?
Child services have grown due to a recognition of the importance of early intervention, which is derived from the theories of neurodevelopment and neuroplasticity.
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Lesson 2: Focus on the multiple service systems that could support adults with autism
A second lesson is to attend to multiple service systems, interagency collaborations, and barriers to accessing care within and across these systems. Like children, adults make use of multiple service systems: developmental disabilities, health, vocational, educational, independent living, social services, transportation, and mental health. Decades were spent on creating systems of care for children and establishing models for interagency collaboration. Adult service systems can apply similar methods. 
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Lesson 3: Attend to outcomes and measurement tools
Another lesson from previous research is the importance of defining outcomes and developing psychometrically strong measurement tools. One recent review of interventions for adults with autism, including those targeting various life outcomes (employment, social relationships, daily living, quality of life), found that in the 20,584 articles screened, only 32 were studies of interventions; more than 50 outcome measurement tools were used among the studies with very little consistency across measures (Lorenc et al., 2017). The authors reported that meta-analyses could not be conducted due to the heterogeneity of intervention content, outcomes, and outcome measures. Even more concerning was that few studies used validated measurement tools (Lorenc et al., 2017). This same challenge of lack of consistency across outcomes and measurement tools has been reported in numerous review articles. The need for psychometrically sound treatment outcome measures has been identified as a key priority for adult autism research (Bolte and Diehl, 2013; McConachie et al., 2015).
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