Situation Zane

At The New York Daily News, Jared McAllister writes about autism mom Rosanne Small-Morgan of Hempstead.

The St. Vincent-born mom’s “Situation Zane - Autism who Knew?” is her latest venture in an effort to gain needed respect for the families and individuals living with this disorder.

“People get really heavy with their books sometimes,” she said about some other publications on autism. “I intentionally made it an easy read,” she said of the book, published in September by the CreateSpace Independent Publishing Platform.

"He’s a big supporter of our son. In the book, he wrote a piece as well,”Small-Morgan said of her husband, noting that too often men abandon women with autistic children.

“He (my husband) is very much a proponent of men sticking it out and supporting.”“I wanted the parents to know they are not alone. We can help each other along this journey,” said Small-Morgan, who is a consumer advocate for an energy company. She gets continual help from her Jamaica-born husband, Chris, a senior computer systems engineer, who contributed to the book and is a steadfast advocate for his son and his disorder.

And there’s more. The couple has joined with Jamaica-born Long Island-based pediatric psychiatrist Dr. Sophia Francis-Stewart of the Brookville, L.I.-based Fay J. Lindner Center for Autism and applied behavioral analysis therapists Ruth Allen and Ruykia Jeffers form the not-for-profit group “Autism, Who Knew?

“The objective is to educate, support and give services to people in the Latino, Caribbean and minority communities,” said Small-Morgan .

Common Core, Special Education, and High-Functioning Autism

Alison DiNisco writes at District Administration:

The Common Core addresses students with disabilities in a 1 ½-page document. It states that special-needs students must have support services, individualized instruction and assistive technology to “enable their access to the general education curriculum.”

However, it does not state what these services are or how they should be implemented. Changes in curriculum must “not change the standards, but allow students to learn within the framework of the Common Core,” the document states.

It’s up to states and districts to determine how to implement accommodations such as simplifying texts and deciding appropriate achievement levels for special-needs students, Taub says.

Approximately 6 percent of the U.S. student population has significant cognitive disabilities, including general intellectual disabilities, autistic spectrum disorders, and language and reading impairments that aren’t helped by enlarged text or hearing aids, says Katharine Beals, a lecturer at the University of Pennsylvania Graduate School of Education who has written about the Common Core’s impact on special education.

“The Common Core is one-size-fits-all, and there isn’t room for a student who has a cognitive age below expectations to get remediation,” Beals says. “The philosophy is driven by good intent, but it’s a lot of wishful thinking. There’s a lot of research out there suggesting that if you want a child to make progress, the most sufficient way to do that is to drop things down to their current level of development.”

In February, Beals wrote at The Atlantic:

So what happens to the approximately six percent of the student population with significant cognitive disabilities—whether general intellectual disabilities, language impairments, reading impairments, non-verbal learning disabilities, or autistic spectrum disorders? What happens when their classrooms function under a set of guidelines that ignore their skills and specific needs?

In general, the news isn’t good. Last November, an issue of Education Week ran several articles on special-needs students and the Common Core. One article characterizes the English language arts goals as “largely unmet.” Another reportsmore than half of teachers surveyed saying they are unprepared to teach the standards to high-needs students.

In October, she wrote at Education News that he Common Core Standards tap directly into the fundamental disability of autism:

Neurologically speaking, autism turns out to be just as general an intellectual disability as low IQ is—even when IQ scores are high. As recent research by neurologist Nancy Minshew has shown, autistic individuals, regardless of IQ, have a serious deficit in their ability to process complex information. Included in this complex information processing deficit are a host of general impairments, including impairments in the ability “to detect structure or inherent organization,” i.e., to figure out how things are structured or organized. Also impaired are “higher-order language comprehension,” “social cognition,” and the ability to draw inferences from context. (Minshew, 2006)

...

Underlying all these impairments, Minshew and others have found, is a hard-wired neurological reality: specifically, a “functional underconnectivity among cortical language regions” that impairs the processing of complex information and particularly affects higher-order language comprehension. (Minshew, 2006)

Unfortunately for students on the spectrum, the kinds of tasks we now know are most impaired in autism are also the kinds of tasks that distinguish the Common Core’s English and Language Arts Standards from all past standards.

...
To those in favor of applying the Common Core Standards to all or most students with disabilities, the answer is accommodation. Some accommodations, for some disabilities, are obvious: sound amplification for hearing impaired students; enlarged screens for visually impaired students. Other accommodations aim at specific learning disabilities: text-to-speech apps for students with dyslexia, for example.

But autism is different. As a complex information processing disorder, it is, as Minshew observes, the opposite of a specific learning disability. Specific learning disabilities include impairments like dyslexia, which mainly affects reading and leaves other intellectual skills intact. Autism, in contrast, impairs a broad range of intellectual skills. In this way, it is more akin to a general cognitive impairment like low IQ. At the same time, however, high functioning autism is a disorder specifically of higher-level cognition, and thus, doesn’t entail poor performance on the simpler sub-skills measured by IQ tests. At the higher functioning end of the spectrum, autism is, indeed, invisible to the standard cognitive assessments that schools use to determine special needs.

References:

www.corestandards.org
www.huffingtonpost.com/2014/08/14/new-york-common-core-scores-2014_n_5679545.html
http://www.capitalnewyork.com/article/city-hall/2014/08/8550723/ny-students-improve-slightly-common-core-exams
Minshew, N. J.,Webb, S. J., Williams, D. L., & Dawson, G. (2006). Neuropsychology and neurophysiology of autism spectrum disorders. In S.O. Moldin & J. L. R. Rubenstein, eds, Understanding Autism: From Basic Neuroscience to Treatment, (pp. 378-415).

ABLE Act on Track to Passage

Susan Davis writes at USA Today:

Congress is set to approve the first major piece of legislation affecting Americans with disabilities in nearly 25 years with sweeping, bipartisan support.

"It's a good opportunity to show how we can work together," said Rep. Ander Crenshaw, R-Fla., the lead House sponsor of the Achieving a Better Life Experience Act.

With 381 House sponsors and 74 Senate sponsors ranging on the ideological spectrum from conservative Rep. Michele Bachmann, R-Minn., to liberal Sen. Elizabeth Warren, D-Mass., the ABLE Act boasts 85% of Congress as a co-sponsor.

It's a distinction shared by no other major piece of legislation taken up by this Congress. The bill is the biggest piece of legislation to affect disabled Americans since the 1990 Americans with Disabilities Act.

...
Supporters of the bill faced some hurdles getting it to the floor. An initial $20 billion cost estimate made some lawmakers hesitate, but negotiators ultimately revised the legislation to reduce the cost to $2 billion by clarifying beneficiaries must have been diagnosed with a disability by age 26, and that beneficiaries can only have one account.

Outside fiscal conservative groups still balked. The Heritage Foundation in early November declared the bill "a decisive step in expanding the welfare state" that would contribute to the complexity of the tax code instead of simplifying it.

Their opposition, which at times has been potent on fiscal legislation, is unlikely to derail the legislation, supporters said.

"We totally disregard that notion and we almost find it offensive," said Sara Weir of the National Down Syndrome Society. "It's allowing families and individuals to save their private funds that they raised. This isn't a handout from government or a new program, it's a hand up and it eliminates inequities that exist in the system right now."

Early Intervention and Research Across the Age Span

Fred Volkmar writes at The Journal of Autism and Developmental Disorders that a pilot study of Infant Start raises important issues.

Since the report on educating young children with autism from the National Research Council (2001), we have known that for many—though not all—preschoolers with autism evidence-based interventions with slightly older preschool children are associated with improved outcomes. As the NRC report noted, the programs evaluated all had some degree of evidence base, and the program used in the current study was built on Dr. Roger’s model (see Rogers et al. 2012). The results suggest that with earlier identification and a developmentally informed treatment of relatively low intensity significant gains can be made early in life when it seems likely that the potential for change is greatest.

 ...

The paper does raise other issues that should be mentioned, at least in passing. One is the issue/problem of early diagnosis, which may be less reliable until children approach their third birthday (Chawarska et al.2014). Data on the crucial issue of early diagnosis and risk assessment have been somewhat conflicting (Chawarska et al. 2012; Ozonoff et al. 2010), perhaps reflecting differences in methods used. Although even significant risk for autism is clearly enough to prompt clinical attention, it will be important to implement innovative approaches to assessment of risk in this young population. While implementation of screening tests/checklists remains important the development of more performance based approaches will be of great interest (Volkmar et al. 2014a).

Finally, and perhaps somewhat paradoxically, this paper focused on young children also should remind us of the need to focus on adolescents and adults with autism or a history of autism. Early intervention seems to be significantly improving the outcomes for many individuals who are now going to college and becoming more independent adults (Fein et al. 2013); however, at the same time, vulnerabilities may persist in various areas, including adaptive and social skills as well as potentially increased risk for some mental health problems (Volkmar et al. 2014b). Although potential supports are available (Brown 2010), many gaps remain in our knowledge with few data on issues like employment and mental health status and need (Piven et al.2011). It is clear that work across the entire age span is critically needed.

Cuomo Signs One, Vetoes One

In New York, WCBS-TV reports (h/t HP):

Families of disabled adults claimed a victory Friday night, as Gov. Andrew Cuomo signed a bill giving them a chance to go before a judge and plead their cases about why they should be allowed to stay in their current facilities.

As CBS2’s Jessica Schneider reported, the families are crediting a story earlier this week on CBS2 for getting Cuomo’s signature on a bill supporting their cause.

The state had wanted to move Cheryl Lloyd’s 22-year-old son from his current facility, but his mother said the new place is just plain dangerous.

“There is no way they’re going to bring my son here,” Lloyd told CBS2’s Jessica Schneider.

Lloyd said she was devastated by the trash-littered, run-down apartment in East New York, Brooklyn, the state says her 22-year-old autistic son must move to from his current care facility just south of Boston.

“The pain is so great because my son deserves better than this,” she said.

Christopher Linton went to live at the Judge Rotenberg Educational Center in Massachusetts when he was just 8 years old because the state didn’t have adequate facilities for him and the more than 400 others with similar disabilities in New York.

To put it mildly, however, not all have had a good experience at Rotenberg.

AP reports:

Gov. Andrew Cuomo has vetoed legislation intended to clear what one lawmaker said in June was a waiting list of 12,000 disabled individuals who needed services or housing.
Cuomo said the Office for People with Developmental Disabilities keeps improving its processing, that the legislation largely duplicates what's already happening, and the issue should have been addressed in the budget.

"The bill would unnecessarily divert valuable staff and financial resources from this effort and would also impose additional unbudgeted costs," he said in a message accompanying the veto Friday night.

...
Assemblyman Harvey Weisenberg said Monday he hopes the delays in helping disabled New Yorkers will be addressed in the upcoming budget, adding that Cuomo's funding proposal for this year didn't provide enough money, and this year's roll-out of the so-called "front door process" that funnels applications to the state agency instead of the nonprofit service providers was "bungled."

His bill would have required the developmental disabilities office to report by Jan. 1 to legislators with plans to improve and expedite application reviews with clear and consistent guidelines.

The office did not immediately reply Monday to a query about how many disabled individuals are currently on a waiting list for services.

Seth Stein, executive director and counsel for Alliance of Long Island Agencies, representing about 40 service providers, said their recent survey found the service delays persist, especially for thousands of autistic individuals who at 21 are leaving school-based special education services. While slow processing may still be an impediment, he said there aren't enough services for the "demographic bulge" of children with autism now needing them, whether that's from better assessments or higher incidence.

Read more here: http://www.mercedsunstar.com/living/health-fitness/article4105341.html#storylink=cpy

Disability Treaty: No Ratification Anytime Soon

James Q. Lynch writes at The Sioux City Journal:

Sen. Tom Harkin is dismayed that his effort to extend the protections of the Americans with Disabilities Act to the international community appears unlikely to gain the Republican support it needs to be ratified by the U.S. Senate.

Harkin, who along with former Republican Sen. Bob Dole sponsored the ADA, which was signed into law by a Republican president in 1990, had hoped to win over another half dozen Republicans to reach the 67 votes necessary to ratify the Convention on the Rights of People with Disabilities (CRPD).

However, a GOP ally did a vote count and said there has been no movement among the Republican holdouts despite encouragement from the U.S. Chamber of Commerce, Business Roundtable, veterans groups and disabilities groups.
...
Harkin thought he might win that support when earlier this month, the National Association of Evangelicals wrote Harkin to say it had dropped its opposition. It changed its position based on modifications of language on abortion and family issues in what are known as RUDs – rules, understandings and declarations – that would guide U.S. implementation of the treaty.

“This is what gave me hope that we might change some hearts and minds on this,” Harkin said. “But it didn’t do any good.”

Based on the vote count, Harkin said, “There no way we can bring it up.”

South Dakota Report

David Montgomery reports at the Argus Leader:

South Dakotans' health insurance costs would rise by as much as $2.50 per month if the state mandated coverage of an expensive but effective autism therapy many insurance plans won't pay for.

That's the conclusion of a report prepared for the Legislature by an outside consultant after passionate debate last year between parents and doctors touting the plan and insurance companies saying the therapy wasn't effective enough to justify the cost.

...
The report by Health Management Associates, released last week, concluded that insurance premiums would rise by 50 cents to $2.50 if ABA coverage were mandatory.

The report also found "moderate evidence" that ABA and similar treatments are effective. Children who receive ABA therapy while young "demonstrate improvements in language, cognitive, adaptive and ASD impairments" compared to a range of other treatments. The report found it was less clear whether ABA was effective among older children with autism.

Supporters of mandating ABA treatment said the report backs up their arguments.

TRICARE Autism Care Demonstration

At The Star-Tribune in Tacoma, Tom Philpott reports on TRICARE:

[A] Comprehensive Autism Care Demonstration that began a slow rollout in late October will still leave retirees and reserve component families facing heavy out-of-pocket costs to provide children with intensive ABA therapy that has become a standard of care, say advocates for families.

Defense Health Agency officials say the demonstration, which is to run through December 2018 and open to any military family’s child diagnosed with autism, will be a platform for evaluating ABA therapy, a series of behavior interventions, to learn which ones benefit autism patients the most.

Army Maj. Gen. Richard W. Thomas, chief medical officer and director of health care operations for DHA, calls ABA therapy is an “emerging science.” Just as military has done for trauma care and other facets of health care delivery, Thomas sees the autism demonstration resulting in “new, innovative solutions to these patients” and discovery of best practices that are safe and effective.
...


When DHA released more details on the autism care demonstration in September, it sparked outrage among parents for another reason: a proposed cut in payment rate for board-certified behavior analysts performing one-on-one ABA therapy. DHA wanted to cut the rate from $125 an hour to $68 for providing day-to-day therapy. The higher rate would only be paid when assessing a patient’s need or drawing up a treatment plan. Otherwise rates would fall 46 percent.
...
The proposed rate change appears to have been based in part on a recent survey of Medicaid rates for ABA therapy in 14 states, which found board-certified behavior analysts receiving payments that ranged from $35 up to $125 a hour.

But DHA didn’t anticipate the reaction from families. Many said they feared board certified behavior analysts would drop Tricare patients and scuttle their child’s therapy. [Autism Speaks director of military relations Karen] Driscoll predicted it indeed would affect“thousands of kids.”

DHA has shelved the rate change until next April, giving it time to consider a more thorough review of ABA therapy payment rates being conducted by the think tank RAND.

The Pope's Address on Autism

The  Vatican Radio translation of the Pope Francis's address to a conference of  the Pontifical Council for Pastoral Health Care, titled "The Person with Autism Spectrum Disorders":

I am happy to welcome you at the end of your XXIX International Conference organized by the Pontifical Council for Pastoral Health Care, which I thank for wanting to realize such a commendable and relevant initiative, dedicated to the complex issue of autism spectrum disorders.

I warmly greet all of you who have come to take part in this meeting, which focused on prayer and testimony, together with people who are affected by autism spectrum disorders, their families and specialized associations.

These conditions constitute a fragility that affects numerous children and, consequently, their families. They represent an area that appeal to the direct responsibility of governments and institutions, without of course forgetting the responsibility of Christian communities.

Everyone should be committed to promoting acceptance, encounter and solidarity through concrete support and by encouraging renewed hope. In this way we can contribute to breaking down the isolation and, in many cases, the stigma burdening people with autism spectrum disorders, and just as often their families.

This must not be an anonymous or impersonal accompaniment, but one of listening to the profound needs that arise from the depths of a pathology which, all too often, struggles to be properly diagnosed and accepted without shame or withdrawing into solitude, especially for families. It is a Cross.

Assistance to people affected by autism spectrum disorders would benefit greatly from the creation of a network of support and services on the ground that are comprehensive and accessible. These should involve, in addition to parents, grandparents, friends, therapists, educators and pastoral workers. These figures can help families overcome the feelings, that can sometimes arise, of inadequacy, uselessness and frustration.

For this very reason, I thank the families, parish groups and various associations present here today and from whom we heard these moving and meaningful testimonies, for the work they carry out every day. I extend to all of them my personal gratitude and that of the whole Church.

Moreover, I want to encourage the hard work of academics and researchers, so that they may discover therapies and support tools, to help and heal and, above all, prevent the onset of these conditions as soon as possible. All of this while paying due attention to the rights of the patients, their needs and their potential, always safeguarding the dignity of every person.

House Will Vote on ABLE Act

Kevin Derby reports at Sunshine State News:

U.S. Rep. Ander Crenshaw, R-Fla., the chairman of the House Financial Services and General Government Appropriations Subcommittee, will have a busy Thanksgiving season since his “Achieving a Better Life Experience Act” (ABLE Act) will hit the House floor in early December. Crenshaw’s bill would create tax-free savings accounts for disabled Americans .

“The ABLE Act is headed for a vote in December – testament to the widespread support for millions who face the daily struggle of living with disabilities,” Crenshaw said on Wednesday. “They deserve the same financial planning tools available to other Americans. My bill gives them just that by empowering families to live healthy and independent lives through tax-free savings accounts.

At Heritage, Robert Rector and Romina Boccia say that the bill would expand the welfare state.  The abstract:

The Achieving a Better Life Experience (ABLE) Act would establish tax-favored savings accounts for individuals with disabilities. The problem is that the ABLE Act takes a decisive step in expanding the welfare state. It eliminates asset tests for all means-tested welfare programs for families with a child who is eligible for Supplemental Security Income (SSI); it also eliminates the asset test for all welfare when disabled children become adults. Even absent the ABLE Act’s impact on means-tested spending, rather than singling out another group of beneficiaries for the tax-neutral treatment of savings, Congress should end multiple taxation of savings for all Americans. Congress should not eliminate the asset test for all families with children on SSI. Congress should reform the treatment of savings for all Americans and preserve means-tested program benefits for those Americans who need them the most.

This argument fails to note that the ABLE Act would help disabled people get the education and training they need to secure gainful employment -- and thus stay off the welfare rolls in the first place. 

So Jerry Isn't Autistic After All

Previous posts discussed Jerry Seinfeld's speculation that he might be on the spectrum. Apparently his PR people have had a word with him. USA Today reports:

After telling Brian Williams earlier this month that he thought he was on the autism "spectrum," Jerry Seinfeld is now backtracking a bit.

"I don't have autism. I'm not on the spectrum," Jerry Seinfeld tells Billy Bush in an Access Hollywoodinterview. "I just was watching a play about it and thought, 'Why am I relating?' I related to it on some level. That's all I was saying."

The Pope and Autism

AP reports:

Pope Francis will meet with autistic children and their families in a bid to help raise awareness and end the stigma and isolation of people living with autism spectrum disorders.

The Saturday audience will cap an international conference on autism being hosted this week by the Vatican's health care office. Organizers said Tuesday it was the biggest medical conference of its kind on autism, gathering more than 650 experts from 57 countries.

The Rev. P. Augusto Chendi of the Pontifical Council for Health Care Workers told reporters the aim of the conference and the papal audience is to "help break the isolation, and in many cases the stigma, that surrounds people affected by autistic spectrum disorders."

While autism is increasingly diagnosed in places like the United States, where about 1 in 68 children are said to be on the spectrum, it is still largely unknown and undiagnosed elsewhere, including in the Vatican's own backyard of Italy, said Dr. Stefano Vicari, head of pediatric neuropsychiatry at the Vatican-owned Bambin Gesu hospital in Rome.

Francis, who has shown great ease around children with special needs, will deliver a speech to the hundreds gathered in the Vatican audience hall. The session will be punctuated by music and movement for the children.

Another Take on Seinfeld

At Haaretz, Rogel Alpher writes of Jerry Seinfeld's self-diagnosis:

The new face of autism is a man who made his fame and fortune from a special brand of humor, exposing the most complex nuances of social human behavior. His jokes, which are spot on, sometime focus on the smallest details of verbal expression.
...
Autism has been in vogue lately. There are documentary films, leading characters in television series. The autistic person is special. An original type. As Seinfeld explained, in his case it doesn’t involve a problem with functioning, but rather “thinking in a different way.” In truth, if that’s what it is, who wouldn’t want to be a little autistic?

But Seinfeld’s nonchalant self-diagnosis is a joke of sorts at the expense of my son, Yotam. While Seinfeld preened with a little autism on television, I sat with Yotam in our living room, together with a social worker. Yotam is 19, but incapable of being responsible for himself. The social worker had come to talk to him as part of the process of having his mother and me appointed his legal guardians.
...
Yotami will be showing an exhibition of his paintings in a month. On good days, he is happy with his life and accomplishes things. When he watches “Seinfeld,” it doesn’t make him laugh. Not even a little.

I wouldn’t change him for any other kid on earth. But for his sake, I would change his future if I could.

Insurance in Washington State

Autism Speaks reported yesterday:

Autism Speaks welcomed Washington as the 38th state to enact autism insurance reform during the 6th annual Autism Law Summit held here today. Washington became the first state to require private insurers to cover medically necessary treatment of autism through litigation; the previous 37 states enacted specific insurance reform laws.

The Washington Autism Alliance & Advocacy (WAAA) teamed up with Seattle attorney Eleanor Hamburger in pursuing a series of successful state and federal class action lawsuits against Washington's major insurance carriers as well as the state employees health benefit plan.

WAAA Founder Arzu Forough [left] and staff attorney Mira Posner celebrate in Nashville

The most recent case, OST v Regence, led to a unanimous state Supreme Court ruling directing Regence Blue Shield, the state's largest private insurer to stop enforcing blanket exclusions for medically necessary mental health coverage, such as applied behavior analysis (ABA) for autism. Hamburger within days then announced she had reached a settlement with Regence of state and federal class action suits.

The proposed settlement would require coverage for medically necessary speech, occupational and physical therapies and ABA therapy to treat mental health conditions, including autism. Exclusions, age limits, monetary caps and visit limits would all be prohibited. A $6 million settlement fund would be established by Regence to reimburse policyholders whose previous claims for autism coverage were denied.

The Supreme Court decision then prompted state Insurance Commissioner Mike Kreidler to direct all state-regulated private health plans to provide coverage in 2015 and to reconsider all claims denied since 2006 on the basis of a blanket exclusion. The order also covers new health plans sold through Washington Healthplanfinder, the state's Marketplace created under the Affordable Care Act.

The state and federal class actions were all brought on the basis that the blanket exclusions violate state and federal mental health parity law.

Insurance in Oregon

Jeff Manning reports at The Oregonian:

The Oregon Insurance Division issued a landmark order Friday requiring commercial health insurers to cover an innovative, but expensive, type of autism therapy.

Activist families have been fighting the insurance industry for years over coverage of so-called applied behavior analysis (ABA) therapy, a sometimes highly effective treatment for a malady once thought incurable. Families have won a series of high-profile legal and regulatory victories of late to force coverage.

Many of the state's largest health insurers have denied coverage, leaving families to bear the $30,000-$50,000 annual cost by themselves.

The division issued two so-called bulletins. The second is a broader ruling requiring insurers to determine coverage of mental health and chemical dependency conditions in the same manner they do for physical medical conditions.

Some insurers continued to refuse claims from families seeking coverage for ABA therapy even in late September and early October, six weeks after the insurance division issued its draft language putting the industry on notice.

Moda Health rejected at least two Oregon families and Regence Blue Cross Blue Shield rejected at least one on grounds ABA was still an "investigational" or "educational" treatment, documents show.

Tripling in Pennsylvania

From the Autism Services, Education, Resources & Training Collaborative (ASERT):

The Autism Services, Education, Resources & Training Collaborative (ASERT) is pleased to announce the release of the Pennsylvania Autism Census Update. The original Pennsylvania Autism Census released in 2009 identified almost 20,000 individuals with autism receiving services across the Commonwealth of Pennsylvania. The 2014 Pennsylvania Autism Census Update now estimates that there are over 55,000 children and adults with autism receiving services, which is almost triple the number initially identified.

The study found that the number of individuals with autism receiving services in all age groups has increased tremendously since the original census study was released. It also found that adults with autism receiving services were the fastest growing group in Pennsylvania. This dramatic upward trend is expected to continue.

...

Learn more about the Pennsylvania Autism Census at www.paautism.org/census .  This website includes a clickable map showing information for each county in Pennsylvania. Resources are also available through the ASERT Collaborative at www.paautism.org or by calling the Statewide Resource Center toll-free number for live assistance at 1-877-231-4244.

Learn more about the PA Autism Census Update 

The cliff awaits. The data also point to the coming tsunami of adolescents and adults with a diagnosis or determination of autism: 

More Reactions to Seinfeld

Jerry Seinfeld has suggested that he might be on the spectrum. Peter Holley reports at The Washington Post:

Some of those who found Seinfeld’s statements offensive were bothered not only by the fact that he made them, but how he went about doing it. Theresa Cianciolo, a behaviorist with the state of Connecticut who specializes in working with twins, triplets and siblings with autism, said the comedian should have avoided a public self-diagnosis. Instead, Cianciolo said, she would have preferred if he had spoken to a mental health professional before associating himself with the autistic spectrum.

“When your child gets an autism diagnosis, it’s devastating,” said Cianciolo, who has a 9-year-old autistic son. “Your life is now over. Your life is your child’s life, and you are forever bound by that diagnosis.”
...
"A lot of college kids who take a psychology 101 class end up saying ‘I can see a part of myself in that,’” Cianciolo said. “But to hear somebody flippantly align themselves with autism and not sound devastated is hard.”

The reason it’s hard for many in the autistic community, according to Rick Ellis, a clinical psychologist specializing in Asperger's syndrome and autism, is because of the strain autism places on many families. He pointed to a 2009 study published in the Journal of Autism and Developmental Disorders that found that mothers of autistic children experience a level of chronic stress similar to combat soldiers.

Factoring in health care, school, therapy and family services, other studies, such as this one from the Centers for Disease Control and Prevention, have placed the economic burden created by childhood autism spectrum disorders at more than $20,000 a year. To be diagnosed with autism spectrum disorder, Ellis said, the symptoms must “limit and impair everyday functioning.”

“It is generally a slap in the face to thousands of parents who have to deal with a child who is non-verbal or severely impacted by autism to compare those children to Bill Gates or any other famous individuals, even of those individuals display some of the minor characteristics of a major condition,” Ellis said.

Home and Community-Based Services

At Autism Speaks, Angela Lello writes about Medicaid changes:

The changes call for “person-centered” planning that provides new rights for people with disabilities to determine their future. And they prohibit home- and community-based services (HCBS) in settings that would “isolate” individuals from the community at large. They were issued earlier this year by the federal Centers for Medicare & Medicaid Services (CMS) and now every state, including yours, is modifying its Medicaid waiver programs to comply.

Person-centered planning is a process that can help family caregivers and individuals identify the exact types of supports they need to achieve specific life goals.

Home and community-based services (HCBS) that are funded by Medicaid must now prioritize the needs of the individual, rather than public agencies or providers. The intent is to help people with disabilities assemble the exact services and types of supports they need to live a full and productive life. The person-centered requirements demand greater opportunities for self-determination by the individual with disabilities in planning their future. This means that the development of the plan must include:

• People chosen by the individual
• Good information for the individual to lead the process and make informed decisions
• Choices for services and supports
• Services based on the individual’s needs and preferences
• The use of plain language and is accessible
• A process to resolve any disputes
• The debate over settings

Medicaid HCBS provides an alternative to living in an institution (like an intermediate care facility or nursing home). Before this rule, there was no clear definition of what types of settings could be funded with HCBS dollars. This rule clarifies the process by which states will determine whether a given setting can be funded with Medicaid HCBS.

How states implement this provision will affect the types of services individuals may ultimately receive. There are different opinions about whether or not Medicaid HCBS should be able to fund specific types of programs. Autism Speaks has long been involved in helping ensure that the needs of all members of the autism community were represented in the development of these new standards. Individuals with autism and their families know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings. View our position statement here.

African Americans and Autism

At The Huffington Post, Areva Martin and Dr. Arshya Vahabzadeh ask if autism looks different in African Americans.

This is a controversial topic, and there have been only a few studies looking at autism in children of color. Is autism, a brain-based condition, different in African Americans? Or are the apparent differences a result of the children and families being exposed to different cultural, economic and social situations? No one really knows, but it could very well be a mixture of the two.

The limited research that is out there points to some key differences in what autism looks like in African-American children. One of the main findings is that "regressive" autism (characterized by the loss of social and language skills after having already developed them) is twice as common in African-American children than it is in their white peers.
One large study suggests that African-American children with autism are also likely to demonstrate challenging and aggressive behaviors.

Another study demonstrates that minority children with autism seem to have more severe problems with language and communication than their white peers. The authors wondered whether the more subtle signs of autism are being missed by parents.

The cause of these findings remains unknown and, like autism itself, may be attributable to a combination of genetic and environmental factors. The difficulty is that there has been little research on autism in African-American children, so findings like the ones I have mentioned are not often followed up on or investigated further.

We applaud scientists like Dr. Daniel Geschwind, a professor of psychiatry, neurology and genetics at UCLA, who has undertaken a five-year genetic study on African Americans and autism. Dr. Geschwind is currently recruiting for this study, and his research will fill a much-needed void in the scientific literature and hopefully provide answers to the complex questions regarding some of the findings that other evaluators have explored but have yet to provide definitive data or conclusions.

Is Jerry Seinfeld Autistic?

Comedian Jerry Seinfeld recently told NBC anchor Brian Williams that he has autistic traits.

I think on a very drawn-out scale, I think I'm on the spectrum. Basic social engagement is really a struggle. I'm very literal, when people talk to me and they use expressions, sometimes I don't know what they're saying. But I don't see it as-- as dysfunctional. I just think of it as an alternate mindset.

NBC's Tracy Jarrett reports:

Seinfeld's revelation sends a positive message that the autism community is much larger and more diverse than people often understand, Ari Ne’eman, president of the Autistic [Self] Advocacy Network, told NBC News. Ne’eman is living with autism and says that there is still a tremendous amount of stigma surrounding autism that hinders the opportunities available to those with the disorder.

“Think about what this does for a closeted autistic person who goes into the workplace knowing that their co-workers have just seen somebody they know, respect, and have a positive opinion of, like Jerry Seinfeld, identify in this way — it’s a valuable and important step in building a greater tolerance for autism,” Ne’eman said.

At The Age of Autism, Ginger Taylor has a very different view, noting that autism involves deficits in social communication.

Jerry's communication and social skills have made him THE wealthiest actor in the world. He is worth $820 million dollars. He is arguably the world's most famous living comedian. And yet Jerry Seinfeld now claims he has autism.

Mind you, he has not actually been diagnosed with it by any of the one thousand willing and qualified medical and psychiatric professionals within one square mile of wherever he happens to be standing right now, but he thinks that he is on the autism spectrum because:

"Basic social engagement is really a struggle. I'm very literal; when people talk to me and they use expressions, sometimes I don't know what they're saying," he said. "But I don't see it as dysfunctional, I just think of it as an alternate mindset."

And you can watch Jerry struggle with basic social engagement and making friends on his new show where he socially engages his many friends, who happen to be the most famous, popular and clever people in the world, on his new show, “I Can't Look You In The Eye or Answer Questions Without Prompting.” No... that's not it. It's called “Comedians in Cars Getting Coffee.” A follow-up to the most famous comedy show of the late 20th century in which Jerry spent many years making witty banter that was frequently entered into the English lexicon. Not that there's anything wrong with that.

Autistic people can be highly successful: the obvious example is Temple Grandin.  But it seems highly unlikely that a person with a pervasive developmental disorder could succeed at comedy, particularly the kind of observational comedy that is Seinfeld's trademark. It is far more plausible that he has what psychologist Philip Zimbardo calls "situational shyness," or feelings of awkwardness in specific settings. Zimbardo says that situational shyness is quite common among performers, who are comfortable on stage, where they are in control, but uneasy in social gatherings.

Calley and the Michigan Mandate

At The Detroit News, Marianne Udow-Phillips and Dr. John F. Greden write:

It will take leaders like Lt. Gov. Brian Calley, who are willing to speak up about their personal journey, to move public policy in a way that will make the difference for the more than 1 million people in Michigan who suffer from other depression, bipolar illnesses and other mental disorders.

In 2012, Michigan passed significant legislation to expand insurance coverage for children with autism spectrum disorder, a group of developmental disabilities that can impair a person’s behavior and social and communication skills. A little more than two years later, it appears that implementation of the legislation has challenges—but also considerable promise—for achieving its goals.

While it is too early to see the legislation’s full impact, there are important lessons in the law’s passage for mental health advocates who want public policy to go beyond autism according to a recent report from the Center for Healthcare Research & Transformation, “Autism Spectrum Disorder in Michigan.”

The debate on autism coverage had been an active and contentious one when Gov. Rick Snyder was first elected governor in the fall of 2010. Bills to expand coverage for autism spectrum disorder were considered and defeated in 2010 because of cost concerns expressed by health plans and groups representing employers.

The legislative climate changed, however, when Snyder assumed office in January of 2011 because a father with a young daughter with autism also assumed an accompanying legislative leadership position that year.

Lt. Gov. Calley, who had long advocated for expanding autism services, served as a powerful advocate for finally moving this legislation forward—a key missing piece in advocates’ efforts to broaden the legislation past autism.

Vaccines, Autism, Media, and the Internet

Elena Conis writes at Salon about the development of the vaccine-autism story.

All the while, parents continued to suspect vaccines. In part, this was likely due to the fact that the media didn’t let go of the story; scholars have shown that public concern about a risk increases as news coverage of the risk increases—no matter how small, or unproven, that risk may be. Moreover, as vaccine worries were being amplified in the news, the rise of the Internet created yet another forum for parents’ suspicions to circulate and gain momentum. Americans in the early 2000s were flocking to the Internet for all sorts of reasons, including the quest for health and medical information. Physicians and health experts lamented that patients’ web research was changing the traditional office visit, and not for the better. But for the parents of autistic children, the online world was a limitless source of information that empowered them to understand and manage their children’s needs. A couple in Massachusetts said they spent five hours a day researching autism tips online. A California mom connected with other parents of autistic children online and learned about their successes and failures. Still others went online to diagnose their own children: “[We] put [the kids] to bed and then got on the Web to do the research,” said a mother in Illinois. “By the end of the night, we knew [our son] Weston had autism.”

... 

The vaccine-autism debate also persisted because it was, in many ways, the perfect story for what sociologist Ulrich Beck dubbed the “risk society.” Concern with risk, Beck argued, is our modern condition. Americans and citizens of other affluent nations are at once acutely conscious of risk and pessimistic about the state’s and institutions’ abilities to manage risks. They are, as a result, plagued by uncertainty; since risk can’t be dependably identified or avoided, one has to assume it is everywhere. This mentality is connected to the increasingly protective form of child rearing prevalent in countries such as the United States, where the economic and emotional value of children continues its upward climb; safety gear and safety precautions for children—from car seats to organic baby food to flame-retardant pajamas—are ubiquitous and ever growing in number. In such a society, the media is a critical venue for identifying, communicating, and evaluating risks. The media certainly embraced this role in the debate over vaccines, covering it attentively, staying focused on the vaccine-autism link long after scientists had dismissed it, and giving voice to parental fears that spoke directly to a lack of confidence in government’s—and industry’s—ability to protect their children from omnipresent risks.

Underrepresentation of Blacks and Hispanics

A press release from the University of Kansas:

The number of children diagnosed with autism has increased in recent years, but a new study co-authored by a University of Kansas professor shows that while the number of students with autism increased in every state from 2000 to 2007, black and Hispanic children were significantly underrepresented.

Jason Travers, assistant professor of special education, co-authored a study that analyzed administrative identification of autism in every state under the Individuals with Disabilities Education Act for the years 2000 and 2007. The disparity in the odds of white students identified compared with minorities might reflect a similar phenomenon associated with the widespread increase in students diagnosed with learning disabilities in the late '70s and attention deficit hyper disorder in the '90s, the authors argue, and also shows that minority students probably are not getting the same services as their peers. 

Travers has studied autism and diagnosis rates previously and noticed discrepancies in the number of students diagnosed. The Centers for Disease Control have estimated that one in 68 children have autism. “

That’s a pretty alarming number,” Travers said of the CDC figure. “I wanted to see if there were differences in these rates. Previous research had found that African-Americans were over-identified. But the data I was looking at showed they were under-identified. This was during an era when autism prevalence rates were increasing across the board.”

Travers and colleagues Michael Krezmien of the University of Massachusetts-Amherst, Candace Mulcahy of Binghamton University and Matthew Tincani of Temple University examined autism identification rates from schools in all 50 states in 2000 and 2007 for the study, published in the Journal of Special Education. The study was started while Travers was a faculty member at the University of Massachusetts-Amherst.

Administrative identification reflects rates at which schools — not necessarily a clinician — identify a child as having autism. Widely varying criteria from state to state are part of the problem, the authors state, but not the full story. White students identified as autistic increased from 2000 to 2007 in all states and the District of Columbia. The number of African-Americans identified increased in all states except Alaska and Montana, and the number of Hispanics increased in all states except Kentucky, Louisiana and the District of Columbia. While counts in all categories showed an increase, black and Hispanic increased at much smaller rates, and all three increased at lower numbers than predicted by the CDC.

A Struggle in Minnesota

At WCCO in Minneapolis, Liz Collins profiles Nick St. Sauver, an 11-year-old with autism, and his parents Brett and Tammy.

“It’s very difficult to hear your own son say, ‘I don’t want to have autism, I just wish I was dead,'” Brett said.

The fight costs the St. Sauvers at least $10,000 a year between support groups, medications and after-school therapies.

“Cross your fingers that insurance will pay,” Tammy said.

But in many cases it doesn’t. Brett cashed out his 401K years ago to be able to cover all the bills.

“It shouldn’t be so hard, it shouldn’t be so hard,” Brett said.

Last winter, teachers could no longer control Nick at his elementary school. The day his parents were forced to pull him out for the year, they went to a hospital looking for immediate help.

“Nick and I will sit here in the emergency room until you find us a bed,” Brett recalled saying at the hospital.

That wait went on for nine hours.

A report by the Department of Human Services last spring found Minnesota has a severe shortage of psychiatric beds for young patients — the lowest number in 15 years.

But mental health experts don’t believe adding more beds is the only answer, pointing to too few child psychiatrists and too little preventative care as even bigger problems.
Fraser’s Autism Center of Excellence, Minnesota’s largest autism service provider, has seen the demand for their services soar. Pat Pulice is the center’s director.

Report on Restraint and Seclusion

Shaun Heasley reports at Disability Scoop:

Despite many states making policy updates in recent years, a new analysis suggests that students with disabilities continue to experience high rates of restraint and seclusion at school.

The practices were employed at similar levels during both the 2011-2012 school year and the 2009-2010 year, according to a review of federal education data conducted by researchers at the University of New Hampshire.

Between those time periods, the report indicates that about half of states revised their policies on restraint and seclusion.

The analysis found that 69 percent of school districts reported no use of restraint and 87 percent did not use seclusion, but a small percentage of districts had “exceedingly high rates.” School districts at both the high and low ends were found in nearly every state.

Prevalence and Reporting Practices

At JAMA Pediatrics, Stefan Hansen and colleagues have an article titled "Explaining the Increase in the Prevalence of Autism Spectrum Disorders The Proportion Attributable to Changes in Reporting Practices."

The abstract:

Importance The prevalence of autism spectrum disorders (ASDs) has increased markedly in recent decades, which researchers have suggested could be caused in part by nonetiologic factors such as changes in diagnosis reporting practices. To our knowledge, no study has quantified the degree to which changes in reporting practices might explain this increase. Danish national health registries have undergone a change in diagnostic criteria in 1994 and the inclusion of outpatient contacts to health registries in 1995.

Objective To quantify the effect of changes in reporting practices in Denmark on reported ASD prevalence.

Design, Setting, and Participants We used a population-based birth cohort approach that includes information on all individuals with permanent residence in Denmark. We assessed all children born alive from January 1, 1980, through December 31, 1991, in Denmark (n = 677 915). The children were followed up from birth until ASD diagnosis, death, emigration, or the end of follow-up on December 31, 2011, whichever occurred first. The analysis uses a stratified Cox proportional hazards regression model with the changes in reporting practices modeled as time-dependent covariates.

Exposures The change in diagnostic criteria in 1994 and the inclusion of outpatient diagnoses in 1995.

Main Outcomes and Measures Autism spectrum disorders.

Results For Danish children born during the study period, 33% (95% CI, 0%-70%) of the increase in reported ASD prevalence could be explained by the change in diagnostic criteria alone; 42% (95% CI, 14%-69%), by the inclusion of outpatient contacts alone; and 60% (95% CI, 33%-87%), by the change in diagnostic criteria and the inclusion of outpatient contacts.

Conclusions and Relevance Changes in reporting practices can account for most (60%) of the increase in the observed prevalence of ASDs in children born from 1980 through 1991 in Denmark. Hence, the study supports the argument that the apparent increase in ASDs in recent years is in large part attributable to changes in reporting practices. [emphasis added]

Offit Speaks to Physicians

At The Los Angeles Times, Eryn Brown writes about Dr. Paul Offit's lecture to physicians at UCLA:

He wanted to give them the kind of pushback doctors have come to expect in affluent parts of Los Angeles and California, where increasing numbers of parents are refusing to inoculate their kids against contagious, even life-threatening diseases for fear of complications.

...
The salt-and-pepper-haired Offit slipped straight into character and zeroed in on one young doctor.

"I know you doctors keep telling me that vaccines don't cause autism. If that's true, then why is it on this package insert?" he asked, playing the role of a parent who had read the blogs and heard the celebrities who connect the two.

Shifting in her seat, the designated victim shot Offit an unsure look.

Then she began citing studies and said that drug packaging inserts include many "temporally associated symptoms" that weren't necessarily caused by the vaccine.

"Why?" Offit pressed. "Why would they put that there — just to scare me?"

The doctor kept trying. "They're required by law," she said. "I actually didn't know the answer."

Offit broke character to explain: Drug companies must list any condition known to have occurred within six weeks of a vaccination, whether the medication caused the condition or not, and even if it occurs at the same level as with a placebo.

Package inserts are legal documents, not medical documents, he said, calling them "the bane of [his] existence."

"If you look at the original package insert for chicken pox vaccine, it says, 'Broken leg has been associated with this drug,'" he added.

Studies have firmly debunked the notion that vaccines cause autism. Yet that is one of the most common claims made by a persistent national anti-vaccination movement that treats Offit as public enemy No. 1.

OT

Stories about autism therapy typically focus on ABA.  But OT is an important part of the story too,  This story in the Chicago Tribune offers some detail:

Since she works with children, Cindy DeRuiter's says her days are always memorable. Her patients are sure to say or do something funny, unexpected, or heartwarming. An occupational therapist at Easter Seals Autism Therapeutic School'€™s Chicago site, DeRuiter, 26, works with children with autism and their families, delivering services in a special-education-school setting.

Her goal is to help kids participate more fully in activities related to school, including development of sensory and emotional regulation skills, handwriting ability, vocational skills, self-care and hygiene, task modification and adaptation. She may address environmental modification of classrooms, and consults with parents, teachers and other professionals to help her patients succeed in school.

She especially enjoys witnessing moments of accomplishment.

"One experience that sticks in my mind was helping a child learn to pedal his tricycle and to jump for the first time," DeRuiter recalled. "It absolutely made him light up with joy."

It can be hard to define occupational therapy (OT) because the field is so broad, DeRuiter said. She sees OTs as health care professionals who help rehabilitate people who've experienced injury, illness, or disability. Therapy focuses on mastering everyday activities (or "occupations") that help patients be more independent, productive and happy.

Aspergery and Apologies

At least one Obama administration official has referred to Israeli Prime Minister Netanyahu as "Aspergery."

The Jewish Daily Forward reports:

“The term “Aspergery” was used in a manner that is insulting to the millions of people around the world with Asperger Syndrome,” said Jay Ruderman, president of the Ruderman Family Foundation, in a press release responding to the article. “It is never OK to insult someone by referring to them by using disability in a negative manner.”

Jennifer Laszlo Mizrahi, who heads RespectAbility, an organization devoted to helping people with disabilities, wrote to White House chief of staff Denis McDonough also complaining about the use of Aspergers as a slur.

“I was really stunned that the insults from the White House used a derogatory term connected to Autism Spectrum Disorder as a way to insult PM Netanyahu,” she wrote. “As the parent of a child on the Autism Spectrum and a disability advocate, I would hope that our president, as well as you as chief of staff, will make it clear that such bullying has no place in our nation.”

The White House responded quickly and on Thursday administration officials reached out to Ruderman, telling him it was an “unfortunate misuse of language” and promising that the issue has been raised at higher levels.

“I’m glad we put this issue on the radar,” Ruderman told the Forward. “It is a perfect teaching moment to come out against using disabilities in a derogatory way.”

The Times of Israel reports:

“Certainly, that’s not the administration’s view, and we think such comments are inappropriate and counterproductive,” said National Security Council spokesman Alistair Baskey, according to the Washington political journal The Hill. “Prime Minister Netanyahu and the president have forged an effective partnership, and consult closely and frequently, including earlier this month when the president hosted the prime minister in the Oval Office.”

Secretary of State John Kerry said Thursday that the statements were “disgraceful, unacceptable, and damaging.” On Friday, Kerry telephoned Netanyahu to apologize in person on behalf of the administration.

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House Members Urge Government to Heed Self-Advocates

From ASAN:

The Autistic Self Advocacy Network applauded five leading congressional champions for autism services this morning for authoring a letter sent yesterday to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). The letter, signed by Rep. Jan Schakowsky (IL-9), Rep. Tammy Duckworth (IL-8), Rep. Kathy Castor (FL-14), Rep. Jackie Speier (CA-14) and Rep. Paul Tonko (NY-20), expressed concern with lack of representation of autistic people in programs funded by the Autism CARES Act, recently passed legislation governing federal autism programs.

The letter notes the severe underrepresentation of autistic people on the Inter-Agency Autism Coordinating Committee (IACC), which is responsible for overseeing all federal funds used on autism research, and in federally-funded programs on autism and other intellectual and developmental disabilities. The letter also expresses concern over the disproportionately small percentage of research funding that focuses on quality of services (2.4%) and adults on the autism spectrum (1.5%).