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Monday, June 30, 2014

JP's Law: Driver's Licenses in Virginia

The family of a 9-year-old Central Virginia boy is pressing lawmakers to help police and first responders better communicate with people with autism.
Pam Mines, the inspiration behind Senate bill 367 said she does not know a lot about politics or policies, but believes in being pro-active protecting her nine-year-old son JP.
Mines worries some people with autism may have trouble communicating their disability to police. As a result, those citizens could be interpreted to be ignoring officers or acting unruly.
“I really wanted to make sure my son was protected in the event, a situation came about, where he is faced with law enforcement and they’re not aware he has autism,” Mines said.
Mines came up with the idea of a special code on Virginia driver’s licenses and identification cards that would alert law enforcement they are dealing with someone with autism.
Mines contacted Sen. Donald McEachin (D-Henrico) who introduced the bill.

Sunday, June 29, 2014


The Los Angeles Times reports:
California's pertussis epidemic has escalated, state health officials said Friday, with 4,558 cases reported this year as of Tuesday — 1,100 of those in the last two weeks. 
"We are off to a really bad start in 2014," Dr. Gil Chavez, state epidemiologist with the California Department of Public Health, said during a phone call with reporters Friday.
Cal Berkeley's California Magazine interviews Arthur Reingold, chief epidemiologist for the UC Berkeley School of Public Health:
Reingold is measured, even mild, when addressing anti-vaxxers. His restraint could be considered remarkable, considering that about five years ago, he was menaced by a disturbed student who was apparently set off by Reingold’s contention that vaccines should not be linked to autism. The man, who Reingold says had a history of of “crazy episodes,” showed up his office one day with a hammer and smashed everything in the place. (Fortunately, the epidemiologist was in Geneva at that time, and Reingold said he decided not to press charges after the student signed a legal document vowing to stay away from him.) 
The vast majority of vaccine resisters, of course, are well-intended and believe that they are acting in the best interests of their own children. Many emphasize that vaccines can trigger serious side effects, others accuse the government of being in cahoots with the pharmaceutical industry, and still others claim, without any credible scientific support, that vaccines cause the disease they are intended to protect against. “I am not wrong!” Sunshine wrote. “I’ve done my children a high service by not following the sheep and you know what, many parents are not following the sheep, or in this case I should say wolves….The growing polarization regarding vaccines is unmistakable.” 
The result? Research has concluded that the few states (including California) that make it easy for parents to opt out of vaccinating their children experience a far higher incidence of pertussis, and that clusters of non-medical vaccine exemptions may have contributed to an outbreak of pertussis in California in 2010.

Saturday, June 28, 2014

Service Dog Settlement

A July 24 release from the US Justice Department:
The Justice Department announced today that it reached a settlement with the Delran Township School District in New Jersey under Title II of the Americans with Disabilities Act (ADA). The agreement resolves allegations that the school district violated the ADA by refusing to allow a student with autism and encephalopathy to have his service dog in school or at school-related activities. The service dog alerts to the student’s seizures, provides mobility and body support and mitigates the symptoms of his autism.

The department found that the student’s mother spent six months responding to burdensome requests for information and documentation, and still the school district refused to allow the student to be accompanied by his service dog. Despite her efforts, the student was even prevented from bringing his service dog with him on the bus for his school’s end of the year field trip. Instead, his mother followed the school bus with the service dog in her car.

Title II of the ADA prohibits discrimination on the basis of disability in public schools. Under the ADA, public schools must generally modify policies, practices or procedures to permit the use of a service dog by a student with a disability at school and school-related activities. Because service dogs must be under the control of a handler, students often act as the handler of their own service dog; when that is not possible, the family may provide an independent handler, as the family offered to do here.

The school district worked cooperatively with the department throughout the investigation. Under the agreement, the school district will pay $10,000 to the family to compensate them for the harm they endured as a result of the school district’s actions. In addition, the school district will adopt an ADA-compliant service animal policy and provide training to designated staff on the school district’s obligations under Title II of the ADA, including requirements related to service dogs.

“ The old view of service animals working only as guide dogs for individuals who are blind has given way to a new generation of service animals trained to perform tasks that further autonomy and independence for individuals with a myriad of disabilities , ” said Acting Assistant Attorney General Jocelyn Samuels for the Civil Rights Division. “The Civil Rights Division will vigorously enforce the ADA to ensure that students who use service animals have a full and equal opportunity to participate in all school activities with their peers.”

Enforcing the ADA is a top priority of the Civil Rights Division. Those interested in finding out more about this settlement or the obligations of public entities schools under the ADA may call the department’s toll-free ADA information line at 800-514-0301 or 800-514-0383 (TDD), or access the ADA website . ADA complaints may be filed by email to .

The Civil Rights Division would like to thank the U.S. Attorney’s Office for the District of New Jersey for their assistance in this matter.

Friday, June 27, 2014

Results-Driven Accountability in Special Education

A June 24 release from the US Department of Education describes a change in how it oversees the effectiveness of states’ special education programs.
Until now, the Department’s primary focus was to determine whether states were meeting procedural requirements such as timelines for evaluations, due process hearings and transitioning children into preschool services. While these compliance indicators remain important to children and families, under the new framework known as Results-Driven Accountability (RDA), the Department will also include educational results and outcomes for students with disabilities in making each state’s annual determination under the Individuals with Disabilities Education Act (IDEA).
The Department has worked extensively with states to ensure meaningful access to special education and related services for students with disabilities and has noted significant improvements in compliance over the last several years. However, educational outcomes in reading and math, as well as graduation rates, for students with disabilities continue to lag. With this year’s IDEA determinations, the Department used multiple outcome measures that include students with disabilities’ participation in state assessments, proficiency gaps between students with disabilities and all students, as well as performance in reading and math on the National Assessment of Educational Progress (NAEP) to produce a more comprehensive and thorough picture of the performance of children with disabilities in each state.
Graphic: Percentage of Initial Evaluations of Students With Disabilities Completed Within Required Timelines Nationally: FY 2006-10 [JPG, 20KB]
Graphic: National Average Math Proficiency for Students With Disabilities: FY 2005-10 [JPG, 16KB]
This change in accountability represents a significant and long-overdue raising of the bar for special education. Last year, when the Department considered only compliance data in making annual determinations, 41 states and territories met requirements. This year, however, when the Department includes data on how students are actually performing, only 18 states and territories meet requirements.
IDEA requires the Department to make annual decisions for states in four categories: meet requirements, need assistance, need intervention, or need substantial intervention. Under Results-Driven Accountability, the Department has made the following determinations for this year based on 2012-13 data.
Meets RequirementsFlorida, Georgia, Indiana, Kansas, Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, Pennsylvania, Vermont, Virginia, Wisconsin, Wyoming, Federated States of Micronesia, Marshall Islands, Palau
Needs AssistanceAlabama, Alaska, Arizona, Arkansas, Colorado, Connecticut, Hawaii, Idaho, Illinois, Iowa, Kentucky, Louisiana, Maine, Maryland, Michigan, Mississippi, Montana, Nevada, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Tennessee, Utah, Washington, West Virginia, American Samoa, Commonwealth of Northern Marianas, Guam, Puerto Rico
Needs Intervention California, Delaware, District of Columbia, Texas, Bureau of Indian Education, Virgin Islands
More on California here.  EdSource reports:
California was cited for federal intervention based on factors that included the proficiency gap between children with disabilities and all children on statewide assessments and the poor performance of children with disabilities on the National Assessment of Educational Progress test, the Education Department said in a letter to State Superintendent of Public Instruction Tom Torlakson.
In a statement, the California Department of Education said, “Like other states, we are concerned that the categorization is more the result of the particular methodology used than of the actual performance of the state’s school districts.” The department added that it will be working with the U.S. Department of Education to resolve issues.
The Education Department also said the California Health and Human Services Agency’s Department of Developmental Services will receive four years of federal intervention to improve the early identification of infants and toddlers with disabilities and enhance programs to assist young children in meeting developmental goals.
Through the Statewide Special Education Task Force, California is already undergoing a review of how to transform special education in the state, including possible changes in credentialing requirements for general education and special education teachers.

Thursday, June 26, 2014

Senate Committee Approves Autism CARES

Elise Viebeck reports at The Hill:
The Senate Health, Education, Labor and Pensions (HELP) Committee quickly approved legislation Wednesday to reauthorize federal autism research and services for five years.

The bipartisan bill, which now advances to the Senate floor, is identical to a measure passed by the House on Tuesday night and has a strong likelihood of becoming law this summer.

The new legislation would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services. The official would help coordinate activities related to autism across federal agencies to ensure they are not duplicative.

The measure also orders the government to study the needs of autistic children as they transition to adulthood.

The HELP Committee advanced the measure on a voice vote Wednesday with no amendments, according to a committee spokeswoman.

Wednesday, June 25, 2014

House Passes Autism CARES

The Hill reports:
The House on Tuesday gave voice vote approval to legislation to reauthorize federal autism research and assistance programs for five years.
The current three-year authorization of autism research and support programs expires Oct. 1.

A provision in the bill as amended during a House Energy and Commerce Committee markup would require the Health and Human Services secretary to assign a deputy to oversee federal autism research and services and ensure programs are not duplicative.

The language came in response to a Government Accountability Office finding last year that 84 percent of current autism research projects have potential to overlap.
Autism advocacy support groups, including Autism Speaks, have endorsed the measure.
The Congressional Budget Office has estimated that the legislation would cost $1.3 billion over fiscal 2015 to 2019.

Tuesday, June 24, 2014

Race, Ethnicity, Nativity

Tracy Becerra and colleagues have an article in Pediatrics titled: " Autism Spectrum Disorders and Race, Ethnicity, and Nativity: A Population-Based Study."  The abstract:
OBJECTIVE: Our understanding of the influence of maternal race/ethnicity and nativity and childhood autistic disorder (AD) in African Americans/blacks, Asians, and Hispanics in the United States is limited. Phenotypic differences in the presentation of childhood AD in minority groups may indicate etiologic heterogeneity or different thresholds for diagnosis. We investigated whether the risk of developing AD and AD phenotypes differed according to maternal race/ethnicity and nativity.

METHODS: Children born in Los Angeles County with a primary AD diagnosis at ages 3 to 5 years during 1998–2009 were identified and linked to 1995–2006 California birth certificates (7540 children with AD from a cohort of 1 626 354 births). We identified a subgroup of children with AD and a secondary diagnosis of mental retardation and investigated heterogeneity in language and behavior.

RESULTS: We found increased risks of being diagnosed with AD overall and specifically with comorbid mental retardation in children of foreign-born mothers who were black, Central/South American, Filipino, and Vietnamese, as well as among US-born Hispanic and African American/black mothers, compared with US-born whites. Children of US African American/black and foreign-born black, foreign-born Central/South American, and US-born Hispanic mothers were at higher risk of exhibiting an AD phenotype with both severe emotional outbursts and impaired expressive language than children of US-born whites.

CONCLUSIONS: Maternal race/ethnicity and nativity are associated with offspring’s AD diagnosis and severity. Future studies need to examine factors related to nativity and migration that may play a role in the etiology as well as identification and diagnosis of AD in children.
The Wall Street Journal presents some data from the study:


Remembering the Burton Hearings

At Politico, former Henry Waxman staffer Sarah Despres recalls Dan Burton's vaccine hearings (h/t Brian and Phil):
It was difficult to watch the nation’s immunization program, a crown jewel of public health, responsible for saving so many lives, being attacked at high-profile congressional hearings — all on the basis of unscientific theories. And it was frustrating to see members of Congress giving equal weight to both sides of the argument when one was so clearly flawed. We staffers often talked among ourselves about the lives the committee was putting at risk.
Few legislators were prepared to stand up for science. Rep. Henry Waxman (D-Calif.), then ranking member on the Government Oversight and Reform Committee and a longtime advocate for children’s health and safe and effective immunizations, was one of a handful of members prepared to state that the evidence did not support a link between the MMR vaccine and autism. As for the others, the antivaccine evidence presented might have been shaky, but the science is complicated. And most members of Congress — on the committee and off — did not feel comfortable opposing the advocates and parents armed with heartbreaking stories of children whose autism seemed to come on just after they received their routine immunizations. A number of members made supportive comments about the committee’s work, and the hearings continued for a number of years.
We can see from the numbers the CDC reported this month that those hearings 14 years ago made a difference. They gave an unscientific theory the veneer of government-sanctioned legitimacy — enough for the Internet and a handful of celebrities to cherry-pick evidence presented to Congress and spread it. A study published in the journal Pediatrics in 2008 found that there were spikes in media coverage of the theory linking vaccines to autism after the two most high-profile hearings in 2000 and 2002. The same study also showed that parents were increasingly getting their information about vaccines from the Internet, where the work of the committee was widely covered.
Unfortunately, Despres does not accurately convey the findings of the Pediatrics article. (Michael Smith, et al., "Media Coverage of the Measles-Mumps-Rubella Vaccine and Autism Controversy and Its Relationship to MMR Immunization Rates in the United States," Pediatrics 121 (April 2008): e836-e848.)
There was minimal media coverage of the MMR-autism story apart from 3 periods. A large media spike in April 2001 that was responsible for the majority of stories during the study period was associated with the Institute of Medicine report that rejected a causal association between MMR and autism. Smaller spikes in 2000 and 2002 reported the 2 US House Committee Reform hearings on the MMR-autism debate. Even during periods of increased media coverage, attention to the MMR-autism story was short lived. For instance, 141 of the 171 stories in April 2001 occurred within 24 hours after the release of the Institute of Medicine report on April 23.
A review of the NIS data between 1995 and 2004 demonstrates a significant increase in both overall and selective MMR nonreceipt within the 2000 NIS cohort of which the MMR vaccinations would likely have occurred in close proximity to the publication of the article in 1998 by Wakefield et al. This increase in selective nonreceipt at a population level was not trivial; 1 in 50 children missed the opportunity for MMR immunization, and the rates were as high as 1 in 40 among children in private practices (data not shown). Significant media coverage of the MMR-autism controversy did not begin until nearly 2 years after this measurable increase in nonreceipt. To our surprise, selective MMR nonreceipt had already returned to baseline by the time this increased media coverage occurred. In the absence of widely reported newsprint, television, or radio reports, the likely explanation for the brief increase in MMR nonreceipt is that parents learned about the MMR-autism controversy from other sources.

Monday, June 23, 2014

Study of Autism and Pesticides

Health Day News reports:
Pregnant women who live within a mile of spaces where commercial pesticides are applied appear to have an increased risk of having a child with autism, a new study suggests.

The risk that a child would develop autism appeared to be highest for women who lived near farms, golf courses and other public spaces that were treated with pesticides during the last three months of their pregnancies.


While the association between possible pesticide exposure and autism is interesting, an expert not involved in the research pointed out that it has a major flaw.

Because the study looked back in time, researchers weren't able to collect blood or urine samples to directly measure pesticide exposures. And they looked at risks associated with four different classes of chemicals.

"So this study cannot pinpoint specific substances as a culprit," said Philippe Grandjean, an adjunct professor of environmental health at Harvard School of Public Health in Boston, "Also, they cannot relate to specific levels of exposure, and they have not taken into account the possible contribution by residues in food," he said.
 As a result, he said, the link reported in this study is weak.
Results of the study were released online on June 23 in the journal Environmental Health Perspectives.

Sunday, June 22, 2014

Insurance Cuts in Indiana

The Indianapolis Business Journal reports:
Indiana boasts one of the highest concentrations of autism-focused therapists and even sports a new magazine, Autism Companion, supported by advertisers and subscribers in Indiana. 
“I didn’t even go out and do any market research at all because the demand was so great,” said Jane Grimes, who, before starting the magazine in 2013, was enrollment director at the Applied Behavior Center for Autism, which is expanding to six locations around the state. 
But now Indiana’s autism therapists say their prospects are cloudier after the state’s largest health insurer, Anthem Blue Cross and Blue Shield, cut payments 40 percent and took a harder line on paying for therapy for school-age children. 
One Indianapolis therapy provider, The Hope Source, nearly closed its doors in March because it couldn’t make payroll, although its finances have since rebounded a bit. Most other therapists have cut staff or services. 
For most autism therapists, the Anthem changes began two years ago, when the Indianapolis-based insurer said children age 7 and older need to receive a chunk of their autism therapy from public schools, as state and federal laws for disabled Americans requires. 
“Anthem cannot duplicate coverage for services that are available through the public school system,” Anthem stated in a May 2012 letter to parents of autistic children. The letter reiterated Anthem’s commitment to provide coverage for autism therapy. It has physicians review therapists’ treatment plan for each patient and, while it might deny some of the proposed terms, rarely issues a complete denial of coverage.

Saturday, June 21, 2014

Jenny McCarthy Strikes Again

Jeffrey Kluger writes at Time:
Jenny McCarthy is apparently determined to be present at the birth of every possible bad idea. Let’s pretend–pretend—for a moment that there was anything at all to the dangerous junk McCarthy has been peddling in falsely linking vaccines to autism and a host of other ills. Presumably her goal would be to protect children, to keep them safe and well.
And so what does McCarthy now propose to do with that generation of kids whose welfare she’s ensured? Why, hand them over to the tobacco companies, of course.
In a jaw-dropping bit of make-a-bad-thing-worse reputation management, McCarthy appeared in a cringe-inducing commercial for blu eCigs—which has since been pulled from the company’s website—peddling the increasingly popular product. Shot in what is meant to be a club, McCarthy appears in a skimpy dress with a silent piece of beef-cake by her side, going on about the virtues of e-cigs, including the fact that “I can whip out my blu without scaring that special someone away—know what I’m sayin’?”
But here’s the thing McCarthy isn’t sayin’: e-cigs are way, way too young a product for anyone to be able to say with certainty how safe or how dangerous they are. They may well be a gateway out of smoking for some people, a healthier alternative to traditional cigarettes. But they may certainly be a gateway in too—particularly for kids.

Autism CARES Provisions

At Left Brain/Right Brain, Matt Carey summarizes provisions of S. 2449, the Autism CARES Act.
1) the title is changed from the previous “Combating Autism Act” Combating is noted in the new bill where the word is being stricken from the previous law.
2) the bill would extend the law until 2019.
3) the Interagency Autism Coordinating Commitee would stay as the advisory/coordinating vehicle for autism research
4) The bill designates that the Secretary of the Department of Health and Human Services will chose someone within HHS to oversee autism research, including implementing the IACC’s Strategic Plan and insuring that research is not unnecessarily duplicative.
5) In a number of instances adults are specifically mentioned in the new bill. For example, “by inserting “for children and adults” after “reporting of State epidemiological data””. I.e. epidemiological data will in the future include adults.
6) The IACC will have between 1/3 and 1/2 members who are public representatives. I.e. a minority but a sizable minority will be public members.
7) If I read this correctly, IACC members will continue to be appointed by the Secretary of HHS. They will serve for 4 years, and can be renewed. If a member resigns, s/he will be replaced by someone chosen by the same method as the other appointees.
8) The IACC will continue to produce the Strategic Plan and a Summary of Advances in autism research.
9) In addition, the Secretary of HHS will be required to produce a report “Report on Young Adults and Transitioning Youth
10) Funding levels–amounts which the bill authorizes to be appropriated–will increase from $161M/year to $190M/year.
Click here for his summary  of the House companion, HR 4631.

Friday, June 20, 2014

National Advertising Division Questions Claims for a Company's Dietary Supplements

Many posts have discussed "alternative" treatments. The Advertising Self-Regulatory Council reports:= (h/t HBE):
The National Advertising Division has recommended that Pursuit of Research, LLC, discontinue all challenged claims for the company’s Nutriiveda dietary supplements, which are marketed as “cures” for conditions that include attention deficit disorder, apraxia, autism, diabetes, dyspraxia, seizures, traumatic brain injury and stroke. The advertiser said it will appeal NAD’s decision to the National Advertising Review Board (NARB.)
The claims at issue were challenged by Nourishlife, LLC, manufacturer of a competing product, Speech Nutrients.
NAD is an investigative unit of the advertising industry’s system of self-regulation. It is administered by the Council of Better Business Bureaus.
NAD noted in its decision that the advertiser sells Nutriiveda Original on its Pursuit of Research website. The advertiser also is the founder of the Cherab Foundation, “a world-wide nonprofit organization working to improve the communication skills and education of all children with speech and language delays and disorders.

The advertiser explained that Nutriiveda Original is an all natural gluten-free and casein-free food product that provides essential amino acids, vitamins, minerals and soluble fiber. The advertiser posited that protein and essential amino acid deficiencies and changes to gut bacteria through diet are linked to autism, apraxia and other neurological disorders.
The advertiser has not conducted any clinical trials on the efficacy of Nutriiveda Original, but maintained that the essential amino acids and whey protein in Nutriiveda are responsible for the claimed health benefits. The advertiser offered as support a number of research articles on amino acids and testimonials from its website.
NAD determined that none of the articles submitted by the advertiser described studies that constituted competent and reliable evidence sufficient for claim support.

Thursday, June 19, 2014

Reproductive Stoppage

In JAMA Psychiatry, Thomas Hoffmann and colleagues have an article titled "Evidence of Reproductive Stoppage in Families With Autism Spectrum Disorder."  The abstract:
Importance Few studies have examined the curtailment of reproduction (ie, stoppage) after the diagnosis of a child with autism spectrum disorder (ASD).
Objective To examine stoppage in a large, population-based cohort of families in which a child has received a diagnosis of ASD.
Design, Setting, and Participants Individuals with ASD born from January 1, 1990, through December 31, 2003, were identified in the California Department of Developmental Services records, which were then linked to state birth certificates to identify full sibs and half-sibs and to obtain information on birth order and demographics. A total of 19 710 case families in which the first birth occurred within the study period was identified. These families included 39 361 individuals (sibs and half-sibs). Control individuals were randomly sampled from birth certificates and matched 2:1 to cases by sex, birth year, and maternal age, self-reported race/ethnicity, and county of birth after removal of children receiving services from the California Department of Developmental Services. Using similar linkage methods as for case families, 36 215 pure control families (including 75 724 total individuals) were identified that had no individuals with an ASD diagnosis.
Exposures History of affected children.
Main Outcomes and Measures Stoppage was investigated by comparing the reproductive behaviors of parents after the birth of a child with ASD vs an unaffected child using a survival analysis framework for time to next birth and adjusting for demographic variables.
Results For the first few years after the birth of a child with ASD, the parents’ reproductive behavior was similar to that of control parents. However, birth rates differed in subsequent years; overall, families whose first child had ASD had a second child at a rate of 0.668 (95% CI, 0.635-0.701) that of control families, adjusted for birth year, birth weight, maternal age, and self-reported maternal race/ethnicity. Results were similar when a later-born child was the first affected child in the family. Reproductive curtailment was slightly stronger among women who changed partners (relative rate for second-born children, 0.553 [95% CI, 0.498-0.614]).
Conclusions and Relevance These results provide the first quantitative assessment and convincing statistical evidence of reproductive stoppage related to ASD. These findings have implications for recurrence risk estimation and genetic counseling.
Shaun Heasley writes at Disability Scoop:
The finding that many families choose to stop having children after learning that their son or daughter is on the spectrum may mean that current estimates on the odds of having a second child with autism could be unreasonably low, researchers said.
When reproductive stoppage was taken into account, the study found that the odds of having a second child with autism rose to 10.1 percent for full siblings, an increase over the 8.7 percent estimate found when families who stop having children are not factored in.
The study did not examine why parents of children with autism are more likely to stop having kids, but researchers said it could be due to concerns about having another child with the disorder or that parents feel they are unable to care for additional children after having one on the spectrum already.

Wednesday, June 18, 2014

Different Views on Autism CARES

From Autism Speaks:
The Consortium of Citizens with Disabilities (CCD), a coalition of 110 national disabilities organizations, has announced its support for Autism CARES, the amended version of legislation before Congress that would preserve federal funding for autism activites over the next five years. The bill has been introduced in the Senate while the House version has already cleared committee and is headed to a floor vote with 79 co-sponsors.
"CCD supports this compromise bill and urges the House and Senate to move the bill forward quickly and not let this law expire," the consortium announced in a statement issued by its Autism Task Force co-chairs from The Arc, Autism Speaks, the National Disability Rights Coalition, the Association of University Centers on Disabilities, and the National Respite Coalition.
From The Age of Autism:
Autism research way to [sic] little, and misdirected

Please contact your member of the House of Representatives in Washington, DC and ask him or her to reject House Resolution HR. 4631 and Senate Bill S. 2449, the reauthorization (refunding) of the former Combating Autism Act. In a truly bizarre move the bill has been renamed the Autism CARES (Collaboration, Accountability , Research, Education and Support) Act. This was done to placate the people who think that there is nothing wrong with autism and that we should not look for the causes, treatments and possible cures for autism.
From the Autistic Self-Advocacy Network:
ASAN is pleased to note that both the Senate and House re-authorization bills have abandoned the title “Combating Autism Act”. For the first time in eight years, the federal government will no longer be in the business of “combating autism”. We applaud the bill sponsors for hearing the concerns of autistic people and our families with respect to the title of the legislation. Unfortunately, the content of the new Autism CARES Act does not include critical provisions necessary to advancing quality of life for autistic people and our families. Despite productive and ongoing dialogue with the legislative sponsors, lobbying from outside groups prevented the inclusion of provisions focused on expanding employment opportunities for autistic adults, increasing the representation of self-advocates in the research process, opening up funding streams to services and adult research and placing greater emphasis on underserved communities, such as racial and ethnic minority groups, women and girls and adults on the autism spectrum.

Tuesday, June 17, 2014


From Autism Speaks:
The Department of Defense has announced plans to consolidate its three different ABA programs under TRICARE with a new "Autism Care Demonstration" for all TRICARE beneficiaries with autism spectrum disorders.
The announcement was made in the Federal Register, but provided few details on how the new program would work. The new program would replace a one-year pilot program that expires next month, and incorporate two other plan offerings providing coverage for applied behavior analysis (ABA) treatment.

The action comes as Congress considers measures requiring TRICARE to improve ABA benefits, reduce restrictions on access to care, and make the treatment available to all children with developmental disabilities, not just autism.
The Autism Care Demonstration program would start July 25 and run through 2018. The new demonstration allows coverage of BCBA/BCBA-D direct services and the tiered service delivery model, which includes BCaBAs and Behavior Technicians. The demonstration will be phased in, enabling regional contractors to work with beneficiaries to ensure a smooth transition and avoid disruptions in services. Cost-sharing requirements for parents appear unchanged.
TRICARE’s website states that ABA services under the program will not be subject to annual dollar caps on care. Visit TRICARE's updated autism services page here.
The implementation and policy details of the new demonstration have not been published yet; Autism Speaks will provide additional analysis as more information is provided.

Monday, June 16, 2014

Caution About CDC Prevalence Estimates

At Autism, David Mandell and Luc Lecavalier raise a caution about CDC estimates of ASD prevalence.
In a “true” prevalence study, the information a child has in their clinical or educational record is irrelevant. Researchers identify some population or population-based sample and clinically assess individuals in person to determine the presence of ASD. The CDC did not rely on this in-person strategy, presumably because of the high costs. The result, however, is that the data they have collected may be uninterpretable as it relates to prevalence. Simply put, without direct assessments of children, we will not know the extent to which the CDC-determined “cases” include false positives, or the extent to which children who it was determined do not have autism are really false negatives. Social impairments and repetitive behaviors are present in many other childhood psychiatric disorders and developmental disabilities (Casey et al., 2013). The flaws in this methodology certainly could explain the great variation in prevalence, clinical presentation, and racial disparities by site.
Tracking ASD is no easy task. In addition to the changes in diagnostic criteria, ASD is clinically complex and has no established biomarkers (Lai et al., 2014). The CDC surveillance studies have resulted in rich datasets from which much important research has been published regarding disparities in diagnosis (Giarelli et al., 2010;Mandell et al., 2009), age of diagnosis (Shattuck et al., 2009), and clinical presentation (Maenner et al., 2013). We question, however, whether they should be used any longer to provide meaningful estimates of prevalence. In fact, we believe it is a mistake to do so.

Sunday, June 15, 2014

Mandate Languishes in North Carolina Senate

The House plan would only apply to state-regulated health plans, which make up about half of the plans in the state, according to Autism Speaks. Self-funded plans run by larger companies or plans governed under the Affordable Care Act would not qualify. The bill also allows small businesses to opt out their premiums increase more than 1 percent over 12 months and says that ABA providers must be regulated by the state.
Sen. Tom Apodaca, R-Henderson, who manages the flow of legislation in the Senate, said last year that he would take up the bill this Spring, according to [Autism Speaks official Lorri] Unumb. But there has been no sign autism will make it to the floor with only a few weeks left of the session.
But last month the State Health Plan Board of Trustees voted to expand coverage for ABA to state employees, which could include legislators.
"Lawmakers do, or ought to feel additional pressure (to pass a bill)," Unumb said.
The House plan would cap coverage for ABA therapy at $36,000 per year and only children who are covered under state-regulated plans and who were diagnosed before age 8 would be eligible. The coverage for the therapy would stop at age 23.

Saturday, June 14, 2014

National Autism Awareness Month and Search Trends

At The Journal of Autism and Developmental Disorders, Elizabeth A. DeVilbiss, Brian K. Lee have a brief report titled, "Trends in U.S. National Autism Awareness from 2004 to 2014: The Impact of National Autism Awareness Month."  They find increases in Google search popularity for autism every April from 2004 to 2014, except April 2005.  From the article:
The peaks in autism interest every April are likely the result of the designation of April as National Autism Awareness Month in the 1970s. The largest overall peak in autism interest in April 2008 could be the result of the December 2007 designation of April 1st as World Autism Awareness Day by the United Nations general assembly. The largest monthly increase in public interest took place in September 2007, which corresponded to a September 18, 2007 segment on The Oprah Winfrey Show featuring celebrities Jenny McCarthy and Holly Robinson Peete in regards to their affected sons (The Oprah Winfrey Show, 2007). The additional peak took place in February 2005, corresponding to a 10-part series on autism featured on The Today Show February 21–25, 2005 (The Today Show 2005). The increases observed in the fall (for autism andADHD, andAsperger’s to a lesser extent) may be due to a number of seasonal factors. For example, fall is the time of year in which children are reporting back to school, and teachers may be more likely to notice differences in behavior at this time, following a summer break, as compared to the remainder of the school year.

Friday, June 13, 2014

Article on Autism Speaks

At The Daily Beast, Emily Shire writes about Autism Speaks:
Compared to other autism nonprofits, Autism Speaks spends a smaller percentage of its revenue on programming. A comparison of 2012 income tax forms found through the Urban Institute shows 70.9 percent of Autism Speaks’ revenue is devoted to program expenses, in comparison to 79.8 percent of the Autistics Self-Advocacy Network’s and 91.5 percent of the Autism Science Foundation’s. Autism Speaks declined to comment on its financial matters.
While Autism Speaks is much bigger and has a larger staff than both of those organizations, the difference in money spent on “current officers, directors, trustees, and other key employees” is striking. For these employees, Autism Speaks spent $2,252,334 in 2012, according to tax filings. In comparison, the Autistics Self-Advocacy Network spent just $65,000 on this class of employees. That was to cover the salary of its president, Ari Ne’eman. In comparison, the former president of Autism Speaks, Mark Roithmayr, had a salary of $436,314 in 2012 and Chief Science Officer Geri Dawson earned $465,671. Eleven other higher-up employees in Autism Speaks earned well into six figures that year. As the head of Autism Science Foundation, [Alison] Singer doesn’t take a salary.

Thursday, June 12, 2014

Autism and the Cloud

From Autism Speaks:
Autism Speaks and Google are collaborating to transform genomic research on autism spectrum disorder (ASD). Autism Speaks will use the Google Cloud Platform to address the challenges of managing, analyzing and disseminating the world’s largest library of genomic information on individuals with autism and their family members. This library is being established by the Autism Speaks Ten Thousand Genomes Program (AUT10K).
The collaboration promises to advance breakthroughs in the understanding, diagnosis, subtyping and personalized treatment of autism, says Autism Speaks Chief Science Officer Rob Ring.
"The AUT10K program holds the potential to radically transform our understanding of autism and redefine the future of medical care for those affected by the disorder,” he explains. “Working with Google is a game-changer in this story.”

As its name suggests, the AUT10K program aims to sequence the whole genomes of 10,000 individuals in families affected by autism around the world.
Thanks to thousands of participating families, Autism Speaks already manages the world’s largest private collection of autism-related DNA samples. Its Autism Genetic Resource Exchange (AGRE) has been a strategic resource for autism research for more than 15 years. Its gene data is deeply cross- referenced with anonymous behavioral and medical information.
However, the vastly larger amount of data collected by AUT10K creates unique challenges for storage, analysis and remote access. Previously, the transport of genomic information involved physically shipping hard drives. Downloading even one individual’s whole genome in a conventional manner could take hours, the equivalent of downloading a hundred feature films.

Wednesday, June 11, 2014

Autism CARES Advances

From Autism Speaks:
Legislation to renew and rename the Combating Autism Act was introduced in the Senate while a House version cleared committee and was sent to the House floor. Renamed Autism CARES (the Autism Collaboration, Accountability, Research, Education and Support Act), the legislation is now identical in both houses of Congress and would continue federal funding for autism research and other activites at an annual $260 million level for another five years.
The House Energy & Commerce Committee added the Senate changes to HR.4631, which had been named the Combating Autism Reauthorization Act (CARA) of 2014, and then sent the bill to the House floor for a vote.
“The bipartisan Autism CARES Act represents our strong commitment to continuing the groundbreaking work being done to address autism and build the foundation for these efforts for years to come,”said Menendez.
“I am particularly pleased this bill includes provisions based on my legislation, the AGE-IN Act, to better address the needs of individuals with autism as they grow into adulthood and no longer have the support of school-based programs," he said. "I’m optimistic the House will quickly adopt this language as they continue work on their bill so we can speak with one voice about the importance of reauthorizing these vital programs.”
Both the House and Senate bills would continue federal funding for five years, reconstitute the Interagency Autism Coordinating Council (IACC) and strengthen accountability over federal research funding to avoid any duplication of effort.
A "National Autism Spectrum Disorder Initiative" would be created by elevating an existing official at HHS to serve as the key point person coordinating the federal government's various autism efforts. In addition, a new study would be commissioned to focus on the needs of young adults and transitioning youth with an autism spectrum disorder or other developmental disability, as well as the challenges they face transitioning from school-based services to adult services.
From ASAN:
Regrettably, Autism Speaks and its allies actively lobbied against the inclusion of provisions expanding self-advocate representation in research, re-balancing autism research funding to support additional investments in services and adult issues, and requiring the LEND programs to attempt to recruit trainees on the autism spectrum and with other developmental disabilities. We find it profoundly disturbing that some in the autism community continue to lobby against any measures amplifying the voices of those most directly impacted by federal autism policy: autistic people ourselves.
ASAN calls upon our allies in the Autistic, autism and broader disability communities to work both with us and with the administration after passage of the Autism CARES Act to ensure that the implementation of the law is consistent with the provisions of the Schakowsky Amendment, which sets a benchmark for including self-advocate voices and taking steps to address long standing inequities in autism research and service-provision. Each of these provisions can be implemented through executive action absent new statutory language. To quote Rep. Schakowsky, “Increasing the voice of self-advocates will only improve our efforts.”

Tuesday, June 10, 2014

CARA is Now Autism CARES

Self-advocates have long objected to the name of the Combating Autism Act.  In this year's reauthorization, they have mounted a hashtag campaign, #StopCombatingMe.  See this video from ASAN:

In response, House and Senate sponsors of reauthorization are renaming the bill.  Instead of the Combating Autism Reauthorization Act (CARA), the bill is now Autism CARES.  A release from Senator Robert Menendez:
U.S. Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) introduced the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES) S. 2449 to ensure federal autism programs created under the Combating Autism Act continue for five years. The legislation also reforms these programs to increase coordination across federal agencies and provide a comprehensive understanding of the issues facing transitioning youth and adults with autism.
“The bipartisan Autism CARES Act represents our strong commitment to continuing the groundbreaking work being done to address autism and build the foundation for these efforts for years to come,” said Sen. Menendez. “I am particularly pleased this bill includes provisions based on my legislation, the AGE-IN Act, to better address the needs of individuals with autism as they grow into adulthood and no longer have the support of school-based programs. I’m optimistic the House will quickly adopt this language as they continue work on their bill so we can speak with one voice about the importance of reauthorizing these vital programs.”
According to a recently released report by the CDC, one in 68 children nationwide are being diagnosed with an autism spectrum disorder (ASD) by the age of eight. This represents an increase from 1 in 88 children just two years ago. New Jersey has the highest rate of ASD diagnosis with 1 in 45 children.
Additionally, a new study published online today by the Journal of American Medical Association's Pediatrics site shows that the lifetime cost for supporting an individual with autism is $1.4 million. The study also finds that adulthood needs for housing and residential services account for these individuals’ highest costs; for children, the highest costs are associated with special educational services and the loss of parental income while caregiving. The Autism CARES Act addresses these pressing concerns by continuing programs that expand research and improve coordination of services to maximize the benefit to individuals and their families.
The Autism CARES Act maintains support for the work established under the Combating Autism Act of 2006 and the Combating Autism Reauthorization Act of 2011. Specifically, the Autism CARES Act:

Addresses the concerns of many in the autism community about the name of the underlying law: the Combating Autism Act. Changing the name of the bill will more accurately reflect the nature of the programs without alienating the very people these programs serve.

Establishes the National Autism Spectrum Disorder Initiative, which elevates an existing official at the Department of Health and Human Services (HHS) to be the key point person coordinating autism efforts. Reforms are also made to the Interagency Autism Coordinating Committee (IACC) to provide an increased focus on reducing unnecessary duplication among autism programs and to provide Congress and the President with more frequent updates on the progress made in achieving the goals of the IACC’s strategic plan.

Calls for a new report to be written focusing exclusively on the needs of young adults and transitioning youth with an ASD or other developmental disabilities and the challenges they face transitioning from school-based services to those needed during adulthood. The findings in this report will form the foundation for future efforts – both within the government and with private services providers – to ensure an evidence-based, comprehensive and outcomes-oriented approach to services and supports for transitioning youth and young adults as they age-out of the school-based support system.
Senator Menendez is the leading advocate in Congress for individuals with autism and their families, having secured the passage of the 2011 reauthorization of the Combating Autism Act. Additionally, he authored the AGE-IN Act to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. Several key policies from this legislation are incorporated in the Autism CARES Act.


Ariane Buescher and colleagues have an article in JAMA Pediatrics titled "Costs of Autism Spectrum Disorders in the United Kingdom and the United States."  The abstract:
Importance The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings.
Objective To update estimates of age-specific, direct, indirect, and lifetime societal economic costs, including new findings on indirect costs, such as individual and parental productivity costs, associated with ASDs.
Design, Setting, and Participants A literature review was conducted of US and UK studies on individuals with ASDs and their families in October 2013 using the following keywords: age, autism spectrum disorder, prevalence, accommodation, special education, productivity loss, employment, costs, and economics. Current data on prevalence, level of functioning, and place of residence were combined with mean annual costs of services and support, opportunity costs, and productivity losses of individuals with ASDs with or without intellectual disability.
Exposure Presence of ASDs.
Main Outcomes and Measures Mean annual medical, nonmedical, and indirect economic costs and lifetime costs were measured for individuals with ASDs separately for individuals with and without intellectual disability in the United States and the United Kingdom.
Results The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was $2.4 million in the United States and £1.5 million (US $2.2 million) in the United Kingdom. The cost of supporting an individual with an ASD without intellectual disability was $1.4 million in the United States and £0.92 million (US $1.4 million) in the United Kingdom. The largest cost components for children were special education services and parental productivity loss. During adulthood, residential care or supportive living accommodation and individual productivity loss contributed the highest costs. Medical costs were much higher for adults than for children.
Conclusions and Relevance The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources. The distribution of economic effect across many different service systems raises questions about coordination of services and sectors. The enormous effect on families also warrants policy attention.

Monday, June 9, 2014

A Look at CARA

At The Taxpayer's Tab, the National Taxpayers Union Foundation looks at CARA:
The Bill: H.R. 4631, the Combating Autism Reauthorization Act of 2014
Cost Per Year: $29 million ($145 million over five years)
Number of Cosponsors: 71 House Members
Autism is a neurological disorder that inhibits brain development to varying degrees, especially in the areas of verbal communication and social interaction. It’s estimated that autism affects one in 50 children between the ages of 6-17 years old, and statistics show that diagnoses have become more frequent in recent years. In 2006, President George W. Bush signed into law the Combating Autism Act, which provided nearly $1 billion in funding for the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and state and local agencies to conduct research on treatment options and to raise awareness about early detection. In 2011, President Obama signed legislation that reauthorized the bill’s provisions through 2014. The bill has provided almost $1.7 billion in total funding since it was originally enacted.
As those authorizations are set to expire, Congressman Christopher Smith (R-NJ) has introduced a bill that would extend those programs for another five years. H.R. 4631 would continue the original legislation’s provisions through 2019 at current funding levels except for the Interagency Autism Coordinating Committee (IACC), which would see an increase of $29 million per year. The Committee is tasked with providing information to the Secretary of the Department of Health and Human Services (HHS) on any federal activity that relates to autism research or outreach. Additionally, the bill would create within HHS a new National Autism Spectrum Disorder Initiative, a five-member board appointed by Congress that would oversee a strategic plan for future research programs and objectives.
Congressman Smith said that the bill would preserve functions critical to improving public health, stating in a press release that “[t]his is a critical investment that is working to determine the cause of Autism Spectrum Disorder, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”
Recently the IACC released a report to Congress on the progress it made over FY 2010-2012 in accomplishing the Combating Autism Act’s (CAA) goals. It includes detailed breakdowns of how each of the 9 agencies within HHS spent CAA funds. The report claimed that NIH funding “... has improved the ability to screen and diagnose [autism] earlier in life; advanced our understanding of the potential causes of autism; and informed innovative treatments, interventions, and services for individuals with [autism].”
Cosponsors include 30 Democratic and 41 Republican Representatives.

The Bottom Line: The Combating Autism Reauthorization Act would extend funding at current levels for several autism research and outreach efforts, and provide additional strategic management and oversight for those programs, totaling $145 million over five years in new spending.

Sunday, June 8, 2014

The Literature on College Students with ASD

Nicholas W. Gelbar, Isaac Smith, Brian Reichow have an article in The Journal of Autism and Developmental Disorders titled "Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs"

The increase in the number of higher-functioning individuals with autism spectrum disorders (ASD) is likely to lead to an increased interest in postsecondary opportunities including degree-granting college and university programs. To provide an understanding of the current evidence-base for supporting individuals with ASD in higher education, this article reports the results of a systematic review of the literature concerning college students with ASD. Overall, 20 articles describing 69 individuals met the inclusion criteria. This small number of articles and participants indicates the scarcity of research on this topic and only two of these studies were experimental in nature. These studies described a video-self modeling intervention and a counseling intervention respectively. Eighteen “case studies” were also present in the literature that described difficulties ranging from anxiety to housing concerns. This review deliniates the limitation of our understanding of effective college programming for individuals with ASD.
From the article:
Currently, the K-12 system assumes given the academic achievement of higher-functioning individuals with ASD  that they will be successful in postsecondary environments; an assumption that is contraindicated by the literature on their post-school outcomes (Billstedt et al. 2005; Henninger and Taylor 2013). This assumption is also contradicted by the results of this literature review; the majority of the articles included indications of depression, anxiety, and loneliness. Obviously, further research is needed to explore the prevalence rates of these concerns in college students with ASD, but other research has indicated that adolescents with ASD also have reported these issues (Berthoz et al. 2013; Skokauskas and Gallagher 2010; Strang et al. 2012). Beyond the social and emotional difficulties faced by these students, it is also important to understand the areas in which they report that they are academically prepared and the areas academically in which they struggle. 

  • Berthoz, S., Lalanne, C., Crane, L., & Hill, E. L. (2013). Investigatingemotional impairments in adults with autism spectrum disordersand the broader autism phenotype. Psychiatry Research, 208,257–264.

  • Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism afteradolescence: Population-based 13- to 22-year follow-up study of120 individuals with autism diagnosed in childhood. Journal ofAutism and Developmental Disorders, 35, 351–360.

  • Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults withautism spectrum disorders: A historical perspective. Autism, 17,103–116.

  • Skokauskas, N., & Gallagher, L. (2010). Psychosis, affectivedisorders, and anxiety in autistic spectrum disorder: Prevalenceand nosological considerations. Psychopathology, 43(1), 8–16.
  • Strang, J. F., Kenworthy, L., Daniolos, P., Case, L., Willis, M. C.,Martin, A., et al. (2012). Depression and anxiety symptoms inchildren and adolescents with autism spectrum disorders withoutintellectual disability. Research in Autism Spectrum Disorders,6, 406–412.

Friday, June 6, 2014

The "Extreme Male" Theory

At Brookings, Darshak Sanghavi says the evidence does not support Simon Baron-Cohen's "extreme male" theory of autism.
What to make of all of this conflicting data? In the end, defining autism as out-of-control maleness is overly simplistic. The theory appeals to outdated stereotypes of male and female behavior, and gets reinforced only by selective reading of the scientific literature.
To his credit, Baron-Cohen has said the recent findings shouldn’t encourage women to take testosterone blockers during pregnancy, or ask their obstetricians to perform amniocentesis early in pregnancy to measure testosterone levels. But promoting the notion of autism as a testosterone-disease still may lead to unproven, even dangerous, cures for autism that prey on vulnerable families. For years, for example, the autism quack Mark Geier (who famously promoted a link between autism and vaccination) treated autistic children with the injectable drug leuprorelin (Lupron) to perform “chemical castrations”—on the theory that autism was just an excess of testosterone. Needless to say, it didn’t work and likely harmed countless children.
Rather than worrying about testosterone in the womb, concerned parents should instead be sure that their pediatricians follow guidelines to properly screen all toddlers between 18 and 24 months of age for autism—here’s a link to the online version of the test—and get early developmental treatment if problems are identified. Unlike the many autism theories floating around, the importance of early diagnosis is supported by scientific evidence.

Thursday, June 5, 2014

Oquendo Lawsuit

AP reports:
The mother of an autistic teenager who disappeared from his public school last fall has filed a wrongful death lawsuit against the city. The suit, filed by Vanessa Fontaine in a state court in Queens, seeks no specific dollar amount. However the initial notice of claim was for up to $25 million.

Fontaine's son Avonte Oquendo walked out an open side door of his Long Island City school for children with special needs last October. Her lawsuit accuses the city, the Department of Education, the police department's school safety division and individual school staffers of failing to do enough to prevent the boy's death.
His remains were found in the East River in January, after a wrenching search that involved multiple city agencies and volunteers scouring the subways and streets. The medical examiner was not able to determine a cause of death.
Family attorney David Perecman said multiple parties were named in the suit because "every single one of them played a part," he said. "From the way the school was built, to the way the system was set up, to the way the school safety division trained their people."

Wednesday, June 4, 2014

Ending the Autism Shuffle

A federal judge signed off Tuesday on a settlement that formally ends the Philadelphia School District's policy of transferring elementary students with autism from school to school with no warning to their families.
The settlement came as a result of a class-action lawsuit filed three years ago by parents frustrated by the policy, known by families as "the autism shuffle." The parents, who all had second graders at Richmond Elementary in Port Richmond, were represented by the Public Interest Law Center of Philadelphia.
The terms of the settlement require the district to notify parents by January if their child could be transferred to a new school that fall. Officials would have to disclose the new school, if known, and inform parents of their right to meet formally with school officials about the transition.
Teachers will also be notified that their students could be transferred.
The district will also have to produce official transfer letters by June and publish lists of all of its autistic-support classrooms. Such lists were not made public in the past.

Tuesday, June 3, 2014


Tricia Hasbrook founded Victory Academy after struggling to find a good fit for her own autistic son. She says teaching autistic students is about breaking down tasks, providing positive reinforcement and following specific instructional strategies.
"The world around them might feel very chaotic," Hasbrook says. "So we teach them sensory regulation skills and social cognition, so that they can have purposeful relationships throughout their life."
Hasbrook acknowledges that a lot of these kids have nontypical behaviors or ways of interacting with the world that aren't going to change. But the teachers meet the kids where they are and give them the tools to pursue what they want out of life.
"They get an environment that they feel is safe — sometimes to act out, or to be their very best selves, and shine here," Hasbrook says. "I think that a separate school for children with autism is an amazing thing."

Ari Ne'eman, who heads the Autistic Self Advocacy Network, disagrees. "Segregated schools lead to segregated societies," says Ne'eman, who is also a member of the National Council on Disability. "Inclusive schools give us the opportunity for inclusive societies."
Ne'eman says that many segregated schools and classrooms — like the ones he attended — have what he calls a culture of low expectations. But even ones that don't can still create hurdles, he says.
Wayne Sailor, director of the SWIFT (Schoolwide Integrated Framework for Transformation) Center, funded by the Department of Education, is working on a new model of inclusive education — one where special education and general education teachers work together as a team.
In a fully integrated school, Sailor says, kids with autism may have a very complex schedule to help in meeting their specific needs. And all students get different tiers of assistance — whether it's a bit of personal attention, or engaging with the whole class or helping the student next to them.