The Effects of Awareness

The Salt Lake Tribune reports that the CDC study found an autism prevalence in Utah of 1 in 47.

The recent study by the CDC focused on samples from 14 areas, including 2,123 children from a Wasatch Front community. Researchers examined medical records for 8-year-olds and, where they had access, school records.

The results were intended to be a snapshot, not statewide or nationwide judgments, said epidemiologist Jon Baio, the study’s lead author.

Differing rates may be explained in part by what records were available. In the Alabama area found to have the lowest prevalence — 1 in 210 — researchers couldn’t access school records. And poverty can affect whether a family seeks advice from a doctor about a child’s behavior.

"You might really rely on those educational evaluations and not have the resources to go to a medical clinic," said Laura Klinger, director of the TEACCH autism program at the University of North Carolina.
...
"I hesitate to say it’s a positive thing that so many children were identified in Utah," said Baio, the CDC researcher. "But in some ways it does reflect that children in that community have better access to programs, services, to resources that are serving children with autism."

At Salon, Thomas Rogers interview Temple Grandin:

 On the other hand, this newly expanded number may also make a lot of parents of kids with autism feel much less alone.

I think that’s really important. When I was young my mother was totally alone. It would have definitely made a lot of difference. She would have had other parents to talk to in a support group and none of that existed in the ’50s.

Nevertheless, while people have been talking a tremendous amount about autism and Asperger’s in recent years, you suggest that’s not been entirely productive for children with autism.

To a certain extent it’s a good thing. On the other hand, you get to the smart kids who could go have successful careers in Silicon Valley getting held back by labels. One kid goes to Silicon Valley, the other stays home to play video games, and they’re the same geek. I visit people in [autism] meetings, and a 9-year-old will come up and want to talk about his autism. I’d rather talk about his science project. You get fixated on your favorite thing as a kid, and now kids are getting fixated on autism instead of dogs or medieval knights. I’d rather get them to fixate on that something that could give them a career.

Bullying, Special Ed, and the New Jersey Incident

In New Jersey, The Cherry Hill Courier-Post follows up on a recorded case of verbal abuse:

Staffers who abuse special education students “don’t appear to have the skills they need … and clearly don’t have the supervision they need,” said Brenda Considine, a spokeswoman for the New Jersey Coalition for Special Education Funding Reform.

“It’s ironic that this stuff is garnering so much attention because we just passed one of the toughest anti-bullying laws in the country aimed at stopping kids from bullying one another,” said Considine. “Here’s clear-cut evidence that (school employees) are engaged in bullying.”
...

“I understand the outcry,” said Assemblyman Dave Rible, R-Monmouth, who has called for improvements to special education in New Jersey. “No one wants to see their children degraded or hurt.”

Rible last week urged legislative action on a measure he’s sponsored to create a task force of special education experts.

“The whole crux of my bill is to examine special education, how we’re spending money there and how we can improve it,” said Rible. “If we’re providing a service, we’ve got to provide the best possible service.”

He and Considine expressed concern that special education students could suffer as districts seek to cut costs by bringing such services into their schools, rather than paying steep tuitions to private organizations.

“I’m not against public schools,” said Rible. “But we’ve got to make sure those teachers are provided the tools that they need.”

Among other measures, Considine said, administrators should regularly pop into special education classrooms to monitor staffers’ performance. And she said detailed records should be kept for each student, so that potential problems can be addressed as early as possible.

Autism Training Bill

At The Washington Post, Ben Pershing reports on former Amnesty International staffer Alex Arriaga, whose son got an ASD diagnosis at age two.

The next surprise came after Tommy started public school in Arlington County. Arriaga realized what a growing number of parents, activists and school administrators have learned: The population of autistic children is fast outstripping the number of teachers trained to handle it.

“You’re sort of catapulted into this world where you feel like you need to learn as much as you can, because you will be your child’s advocate,” Arriaga said. “And you may get a good teacher, but you just don’t know.”

So the politically savvy Arriaga, a former White House and congressional aide, joined other Northern Virginia parents in approaching Rep. James P. Moran Jr. (D-Va.). Their lobbying efforts bore fruit Friday, when Moran introduced legislation that would begin addressing that shortfall.

The AUTISM Educators Act would create a five-year grant program to train general-education classroom teachers on the best ways to identify and interact with students with autism spectrum disorders. While children with extreme forms of autism often require separate special-education classes, many with milder cases are mixed into the general population.

The grants would be targeted at school systems with high autism rates — 10 percent or more of the district’s special-education population — and would require the systems to partner with a university or nonprofit group to develop the training program.

Verbal Abuse and the Wire: A Followup

Here is a followup to the story of the father who put a wire on his ASD son.  It shows why unions are not always allies of ASD people and their families.

The former teacher of an autistic boy allegedly mistreated by staff at a New Jersey school did not call him "a bastard" or make other harsh comments that were secretly recorded by the child's father, her lawyer said in a statement.

The statement also accused the boy's father, Stuart Chaifetz, of putting the teacher, Kelly Altenburg, and her family "in harms way," and said she wasn't even in the room for part of the day.
...
At least one classroom aide reportedly lost her job, but the state's largest teachers union said that because Altenburg had been transferred to another school, and not fired, she had been exonerated of making the remarks. Cherry Hill Superintendent Maureen Reusche, however, said "the investigation remains ongoing." [emphasis added]
...
The statement from Altenburg's lawyer said the accusations had "hurt her deeply" and she wanted to "set the record straight."

"Mr. Chaifetz ... has been disingenuous in his assertions and has failed to advise the public accurately, including the fact that for at least approximately one hour in the beginning of the day at issue, Mrs. Altenburg was not even in the classroom with Mr. Chaifetz's son," the lawyer, Matthew B. Wieliczko, wrote in the emailed statement. He said she was at a "Professional Learning Community Meeting" that morning.

Visit msnbc.com for breaking news, world news, and news about the economy

Wearing a Wire to Catch Abuse

Previous posts have dealt with cases of abuse captured on video. Reuters reports:

A New Jersey school district has fired at least two educators for verbally abusing autistic children after a father sent his 10-year-old autistic son to school wearing a hidden microphone upon suspecting he was being mistreated by staff.

The audio recordings, made public in a 17-minute video later posted on YouTube, capture educators speaking in harsh tones to the autistic children, including one in which a woman tells the young boy what sounds like "You are a bastard."

"That night my life changed forever," father Stuart Chaifetz said of the first time he heard the recording. "What I heard on that audio was so disgusting, so vile."

Chaifetz said in the video he had become perplexed by reports his son, Akian, was being accused of hitting teachers and aides and knocking over chairs at Horace Mann Elementary School in Cherry Hill, New Jersey.

ABC reports:



AP reports:

In cases around the country, suspicious parents have been taking advantage of convenient, inexpensive technology to tell them what children, because of their disabilities, are not able to express on their own. It's a practice that can help expose abuses, but it comes with some dangers.
...

Laws on audio recordings vary by state, but in most of the U.S., including New Jersey, recordings can generally be made legally if one party gives consent. Over the past decade, courts in New York and Wisconsin have ruled that recordings made secretly on school buses were legal, finding that there is a diminished expectation of privacy for drivers on the bus.
The recordings have led to firings in several states, criminal convictions of bus employees in Wisconsin and New York, and legal settlements worth hundreds of thousands of dollars in Ohio and Missouri.

"In classrooms where children are nonverbal, unable to communicate, defenseless," he said, "we should start to have a discussion of whether cameras in the classroom are necessary."

Read more here: http://www.kansascity.com/2012/04/25/3575822/parents-use-recorders-to-prove.html#storylink=cpy

Read more here: http://www.kansascity.com/2012/04/25/3575822/parents-use-recorders-to-prove.html#storylink=cpy

ASD Adults in Michigan and the Funding Cliff

Peggy Walsh-Sarnecki writes at The Detroit Free Press:

Schools across the state have programs for kids with autism starting as young as 3 and going as far as 26, depending on their needs.

But that support ends once they are out of school. Most of those aging into adulthood will find an alarming lack of services designed to help transition into the next stage of their lives. An estimated 500,000 kids in the U.S. with autism will turn 18 within the next five years -- more than 5,000 of them in Michigan.

"It's like falling off a cliff," said Kathy Sweeney, director of OUCARES, the Oakland University Center for Autism Research, Education and Support.

Without continued assistance into adulthood, those with autism are likely to regress and lose some of their hard-won verbal and social gains, according to a 10-year study published this year by Washington University.

"Unfortunately, adults leave their educational entitlements and there are no adult entitlements," said Leslie Long, director of housing and adult services for Autism Speaks, a national advocacy group.

Allen Frances on Changes in Prevalence

Dr. Allen Frances edited DSM-IV and blames himself for the "epidemic of Asperger's."  He has argued that the increase in prevalence is an artifact. He sums up his views in the New York Post.

That unexpected jump has three obvious causes. Most important, the diagnosis has become closely linked with eligibility for special school services.

Having the label can make the difference between being closely attended to in a class of four versus being lost in a class of 40. Kids who need special attention can often get it only if they are labeled autistic.
...
The second driver of the jump in diagnosis has been a remarkably active and successful consumer advocacy on autism, facilitated by the power of the Internet. This has had four big upsides: the identification of previously missed cases, better care and education for the identified cases, greatly expanded research and a huge reduction in stigma.

But there are two unfortunate downsides: Many people with the diagnosis don’t really meet the criteria for it, and the diagnosis has become so heterogeneous that it loses meaning and predictive value. This is why so many kids now outgrow their autism. They were never really autistic in the first place.

A third cause has been overstated claims coming from epidemiological research — studies of autism rates in the general population. For reasons of convenience and cost, the ratings in the studies always have to be done by lay interviewers, who aren’t trained as clinicians and so are unable to judge whether the elicited symptoms are severe and enduring enough to qualify as a mental disorder.

Illinois Legislation

In Illinois, the Springfield State Journal-Register reports on autism legislation, leading with the case of Rebekah Webster, an ASD child whose parents worry about her future.

Legislation that has passed the Illinois House would help people like Rebekah by creating a model adult day care program for adults with autism that supporters hope could be used by other agencies throughout the state.

“This is one of the No. 1 problems, not just in Illinois, but in all of the United States,” said Rep. Patricia Bellock, R-Hinsdale, the sponsor of House Bill 4990. “We call it falling off the cliff. We can keep them in school until they’re 22. After that, they have nothing for them.” [emphasis added]

The United States has experienced a 78 percent increase in autism cases in the last 10 years, according to the Centers for Disease Control. Partly as a result, an increasing number of bills have been introduced in the General Asembly to deal with the subject, including legislation that requires training by police and firefighters in dealing with the autistic and tightens insurance requirements.
This year, there are two major pieces of legislation: Bellock’s bill cleared the House on a 106-6 vote and is pending in the Senate. Sen. Don Harmon, D-Oak Park, is sponsoring a bill that would require insurance companies to cover previously diagnosed autistic children, even if the definition of autism changes later to exclude them. That bill is pending in the Senate.

Emken, Obamacare, and Autism

Elizabeth Emken, an autism parent and creator of the Autism Votes website, is running for the GOP nomination for US Senate in California. At the Sacramento Bee, Dan Morain contends that Emken's opposition to Obamacare puts her at odds with much of the autism community:

Peter H. Bell, executive vice president of Autism Speaks, noted that the act provides important benefits, not the least of which is that children can stay on their parents' health plans until they turn 26, and cannot be denied coverage because of their pre-existing condition.

Autism Speaks successfully lobbied to insert language in the final bill requiring that newly created state health care exchanges cover behavioral health treatment, a reference to a type of therapy called assisted behavioral analysis. Alex benefits from the therapy.

"That is a very important provision for us," Bell said. "If the act gets repealed, the provision is no longer there. Fewer families would be able to access those benefits."

In California, state Senate President Pro Tem Darrell Steinberg last year carried a bill requiring that private health insurance companies provide assisted behavioral analysis beginning in July. That measure assumes that in 2014, the feds will start providing subsidies for the treatment.

"Funding is at the core of our services and program needs for our children," said Rick Rollens, the former secretary of the Senate who lobbies on autism-related issues in Sacramento and became immersed in the issue after his son was diagnosed 20 years ago. "We'd be back to square one" if the Affordable Care Act unravels.

An earlier article in the same paper provided additional detail.  Emken lobbied to include autism in the bill even though she disagreed with its overall approach:

Emken said that while she disagrees with the overall approach of the health care overhaul, the effort to include the language was important for her and the organization because autism is "perfect example of a catastrophic medical event" that some insurance companies will not cover.

"What we were doing is, as everyone was doing when you have a Democratically-controlled Senate, House and president, everyone, Democrats and Republicans are all working on a piece of legislation that's on the table," she said during a Sacramento press availability Tuesday. "That's how it's done. You don't just walk away if you don't like how things are going. You continue to work on it."

Emken said the reference to autism did not make it into the bill and regulatory language emerging on the issue is "extremely nebulous." She said that outcome reinforced her opposition to the law.

"The issues are so long and vast and broad with Obamacare," she said, "I really believe the only solution is to repeal it, but I do believe in replacing it with real health care reform and real health insurance reform."

Read more here: http://www.sacbee.com/2012/04/22/4430762/candidate-has-a-personal-reason.html#storylink=cpy

Witness

People with autism and other disabilities are disproportionately likely to be victims of crime.  What happens when they testify? See Katie L. Maras and Dermot M. Bowler,"Eyewitness Testimony in Autism Spectrum Disorder: A Review," Journal of Autism and Developmental Disorders, published online March 12, 2012.  The abstract:

Autism spectrum disorder (ASD) is estimated to affect around 1% of the population, and is characterised by impairments in social interaction, communication, and behavioural flexibility. A number of risk factors indicate that individuals with ASD may become victims or witnesses of crimes. In addition to their social and communication deficits, people with ASD also have very specific memory problems, which impacts on their abilities to recall eyewitnessed events. We begin this review with an overview of the memory difficulties that are experienced by individuals with ASD, before discussing the studies that have specifically examined eyewitness testimony in this group and the implications for investigative practice. Finally, we outline related areas that would be particularly fruitful for future research to explore.

From the text:

From the rather sparse work that has explored eyewitness testimony in ASD to date, it seems that high-functioning witnesses with ASD are capable of providing reliable testimony and are no more suggestible than their typical counterparts, but that the currently recommended police interviewing technique (the CI) is unsuitable for them. Once additional research has replicated and extended this work, it will be important to ensure that findings appropriately inform investigative practice.

Administration for Community Living

On Monday, the Department of Health and Human Services announced a reorganization:

The Obama administration and my department have long been committed to promoting community living and finding new mechanisms to help ensure that the supports people with disabilities and seniors need to live in the community are accessible.

Today, with the creation of the new Administration for Community Living (ACL), we are reinforcing this commitment by bringing together key HHS organizations and offices dedicated to improving the lives of those with functional needs into one coordinated, focused and stronger entity.

The Administration for Community Living will bring together the Administration on Aging, the Office on Disability and the Administration on Developmental Disabilities into a single agency that supports both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children with developmental disabilities or seniors with dementia. This new agency will work on increasing access to community supports and achieving full community participation for people with disabilities and seniors.

...

For more information, please visit http://hhs.gov/acl

Michelle Diament writes at Disability Scoop:

Obama administration officials and disability advocates say the bureaucratic change could pay big dividends long-term for people with special needs by pushing disability issues up the food chain at the cabinet-level agency. Specifically, they say, a big plus is that the new head of the community living administration will have a seat at the decision-making table as an assistant secretary directly reporting to Health and Human Services Secretary Kathleen Sebelius.

“It’s the beginning of a much stronger position for disability interests in the Department of Health and Human Services,” said Ari Ne’eman, president of the Autistic Self Advocacy Network, who called the organizational shake-up a “game changer.”

Michigan Mandate Becomes Law: It's Personal

MLive reports:

Lt. Gov. Brian Calley said he became an advocate for expanding care for autism patients after some families struggling to find help for their children came to his office.

But nearly three years later, it became personal.

“I was at a Heath Policy Committee hearing, and I heard testimony about what it was like from a boy who had received treatment as he described himself before he had access to treatment,” Calley said.

“And my wife and I, we knew we were having such difficulty with our daughter, and we had a hard time getting anybody to help and figure out what the problem was. It became clear at that point that what they were describing was how she was.”

Surrounded by his family and others with children diagnosed with the disorder, Calley on Wednesday signed into law a bipartisan package of bills making Michigan the 30th state to mandate insurance companies provide coverage for autism treatment and diagnosis.

Calley was pressed into service to sign the bills because Snyder is in Afghanistan visiting troops.

AP reports:

Lawmakers gave final approval to the measures last month, and both Republicans and Democrats who worked on the legislation said it was the plight of families trying to pay for their children's treatment that made the legislation so critical.

"When things are personal, you work a lot harder," said Democratic Sen. Rebekah Warren of Ann Arbor. [emphasis added]

Last month, Calley testified on the legislation:

State Officials Learn about the Spectrum

In North Dakota, The Jamestown Sun reports:

When Colin Vieweg goes to the mall, he feels like he’s in a jungle surrounded by howler monkeys all screaming at the same time.

“I just need to go away and stay away from the noise,” the Fargo 12-year-old said. “My mom says that’s because my brain processes noises differently than other people.”

Colin was one of several people who told state lawmakers Tuesday about what life is like living with Asperger syndrome, a developmental disorder on the autism spectrum.

The Human Services Committee is studying autism spectrum disorder and learning about the diagnosis, early treatment and care for individuals with the disorder. The committee is seeking recommendations on how to improve services and what changes the 2013 Legislature should consider.

Lawmakers asked to hear from North Dakotans with autism spectrum disorder to get a better idea of the challenges they face.

In New Jersey, the Star-Ledger reports:

Gov. Chris Christie today toured an autism treatment center that is using public education funds and private donations to teach life skills to 28 students and their families. Christie visited Somerset Hills Learning Institute during the campaign and returned to tout the Bedminster center's research-based approach.

"Of all the visits I made as candidate for governor in 2009 no place affected me personally more than this place," he said in a news conference in the center's lobby, adding: "It's places like this that are helping students and their families every day acquire the necessary skills to live and work as productive citizens of their communities."

Michigan Mandate and Jobs for Behavior Analysts

An earlier post noted that the West Virginia mandate might enable the state to keep behavior analysts who received training in its institutions.  The same is true of Michigan.  Crain's Detroit Business reports:

With 15,400 school-age children and an additional 4,500 ages 2-5 diagnosed with autism, Michigan needs up to 600 more licensed psychologists who also are board-certified behavior analysts and as many as 7,000 licensed therapists to provide autism treatment, said Colleen Allen, executive director of the Autism Alliance of Michigan in Detroit.

...

"There will be some frustration in the beginning from parents because there are not enough qualified therapists in Michigan," said Dave Meador, one of the leading supporters of autism insurance reform and a member of the Autism Alliance.

"Our intention is to help organizations run job fairs to attract (licensed psychologists) back to Michigan," said Meador, who is also CFO of DTE Energy Co. in Detroit. "We have good behavioral colleges, but many graduates leave the state because there is no insurance for autism. This (law) will be a job creation mechanism." [emphasis added]

In Michigan, there are only 118 board-certified behavior analysts, and fewer who specialize in autism, compared with 2,000 in Florida. The Sunshine State is one of 30 that, like Michigan, now mandates autism insurance coverage, said James Todd, a psychology professor at Eastern Michigan University in Ypsilanti

MLive reports:

When passing the bill, State Rep. Lisa Brown, D-West Bloomfield, urged members to note the loss of talent Michigan was facing without the bills.

“I think most people know at least one person who has a family member with a child diagnosed with autism,” she saidwhen the legislation was approved on March 29. “We’ve heard from the schools. They graduate these wonderful, educated, ready-to-go-to-work kids and they have to move out of state because the jobs aren’t here because it’s not covered by insurance.”

Department of Psychology Professor and Chair Wayne Fuqua said he looks forward to seeing less than 90 percent of his behavior analysis graduate students leave the state.

He says he hopes the new legislation translates into WMU ramping up training capabilities, especially once the Great Lakes Center for Autism Treatment and Research center is completed in July. Residential Opportunities, Inc., and Western Michigan University began a $1.7-million renovation project on Portage Road for a new center for autism treatment to serve the 500 children with autism and their families in Kalamazoo County in January.

Insurance Items

RAND has a report on implementation of the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008. Contracted by the HHS Assistant Secretary for Planning and Evaluation, RAND interviewed several representatives of managed behavioral health organizations (MBHOs) 

A few examples were given of services that are not covered because they are not considered medically necessary: (1) “wilderness” programs for youth -- because of no evidence of effectiveness and the lack of clinically credentialed staff; and (2) Applied Behavioral Analysis (ABA) for autism, because it is considered educational rather than medical. [emphasis added] In addition, industry leaders mentioned limited coverage for psychological testing, because while it is clinically appropriate to rule out certain diagnoses, it is also a service that is subject to abuse. Some industry representatives suggested that these services may serve useful social functions but are not evidence-based behavioral health treatments....These organizations reported using standard credentialing checks to decide which providers to include in their networks. Some leaders mentioned excluding certain subspecialties (for example, specialty providers of ABA for autism) ,[emphasis added] and reported doing ongoing evaluations of network providers. One industry leader noted that a problem for all organizations is a shortage of psychiatrists in many geographic regions (especially in rural and frontier areas), and that they work hard to credential and include as many psychiatrists as apply. Another noted that exclusion of individual providers was done only on the basis of “egregious” quality issues.

A release from the California Department of Insurance:

Insurance Commissioner Dave Jones today announced that he has reached another favorable agreement with an insurer, UnitedHealthcare Insurance Company, to require immediate coverage of behavioral therapy for autism as a medical benefit. This new agreement is the latest step in an industry wide compliance initiative by Commissioner Jones. It follows three settlements reached earlier this year with Blue Shield, Health Net and Cigna to provide behavioral health treatments, including Applied Behavior Analysis (ABA), a well-recognized and effective treatment for autism. In addition, Commissioner Jones reconfirmed that yet another major health insurer, Anthem Blue Cross of California, has been providing the coverage pursuant to Department of Insurance (CDI) direction since November 2009.

Autism Advocacy

As part of its "Autism Inside and Out" series, North Metro TV offers a video guide to legislative advocacy, featuring Sherri Radoux of Minnesota:


 

Mandate Bill Passes Alaska Legislature

The Alaska insurance mandate bill came back from the dead and passed the Legislature over the weekend.  AP reports:

The Alaska Legislature has passed a bill that would extend insurance coverage to some children for treatment of autism spectrum disorders.

SB74 passed the House 36-3 on Sunday. The Senate later agreed to the House changes.
The measure would require insurance coverage for medically necessary treatments for autism, like speech and physical therapies.

Some insurance companies opposed SB74, calling it unfair to put the burden on private companies alone. An amendment that would have had the state comply with the coverage requirements was withdrawn on the House floor.

Torture

There have been many stories of abuse and restraint of people with ASD.  WFXT in Boston reports on a case of electric torture at the Judge Rotenberg Center:

Graphic video of teen being restrained, shocked played in court: MyFoxBOSTON.com

Employing Autistic Adults

CNN reports on Roses for Autism, a Connecticut organization that provides ASD adults with job experience:



In Dallas, KTVT-TV reports on employment of autistic adults:

TV News Reports on Autism

KPNX-TV in Phoenix reports on varieties of autism:



AP reports on the CDC study:



New Jersey public television interviews Walter Zahorodny, of UMDNJ, who says that the increase in prevalence probably is not just an artifact of greater awareness and changing diagnostic criteria.  He also expresses concern about DSM-5.

Watch Autism Investigator Sees Disorder Rates as Health Crisis on PBS. See more from WNJT.

Alaska Mandate Back from the Dead

At the Associated Press, Austin Baird writes that Johnny Ellis's SB74 may still pass after all:

Rep. Wes Keller still sees flaws in a bill that extends insurance coverage to some children for treatment of autism, but the chairman of the House Health and Social Services Committee said Friday that he plans to let the widely supported proposal move out of his committee.
...
Some insurance companies voiced opposition of the measure, and Keller sympathized with their claim that it is unfair to put the burden on private companies without extending the onus to the rest of the market. Premera Blue Cross-Blue Shield of Alaska has claimed a 3 percent increase of their premiums will likely occur, and they have said the bill only affects 15 percent of the market with the rest uninsured or covered under public plans.

Keller said after a hearing on the bill Wednesday that he was unlikely to let it through, but now six cross-sponsors of the bill are members of his committee. They and the bill's 29 overall cross sponsors in the House have won out.

He said Friday he has realized his position on the matter leaves him in a "pretty severe minority."
...
If everything goes as planned on Saturday, the bill will move to the Labor and Commerce Committee as scheduled. That committee could, however, waive the bill to ensure a floor vote takes place before session ends Sunday at midnight.

Read more here: http://www.adn.com/2012/04/13/2421995/keller-will-let-autism-insurance.html#storylink=cpy

Genetics and Autism

At The Huffington Post, Dr. Robert Klitzman writes that genetic testing may lead to discrimination:

The discovery of genes associated with autism raises these concerns anew. The Genetic Information Non-discrimination Act (GINA) is designed to try to prevent genetic discrimination in health care, but does not apply to life insurance, disability insurance or long-term care insurance. Currently, life insurers are free to request genetic information, and discriminate as a result.

Schools may learn of, or request genetic test results, and teachers may then discriminate against students with autism-associated mutations -- even if the mutation is not predictive (i.e., if some, but not all individuals with the mutation end up having symptoms). Parents may spend less time with a child found to have an autism-associated mutation than with other offspring.

Genetic information has been introduced into court rooms. The fact that a defendant in a crime has a mutation associated with autism may sway a court in judging guilt, causation, liability, or sentences.

Last week, Thomas Insel wrote:

Last week’s autism news was about prevalence. The CDC reported a 78 percent increase in autism prevalence since 2002. This week’s autism news is about genetics—three papers in Nature describe new genes associated with autism.
...
Is autism genetic or environmental? These new studies suggest it can be both. Genetics will not identify the environmental factors, but it may reveal some of the many syndromes within the autism spectrum (as in other neurodevelopmental disorders), it can define risk (as in other medical disorders), and it should yield clues to the biology of autism (revealing potential targets for new treatments). These three new papers on spontaneous mutations are an important milestone in a long journey. In parallel we need to find environmental factors, recognizing that there will be many causes for the autisms and many roads to find them.

Finally, an unavoidable insight from these new papers is that autism even when genetic may be spontaneous and not inherited in the sense that one or both parents carry some reduced form of the syndrome. Perhaps this insight will finally reduce the “blame the parents” legacy perpetuated for too long in the absence of scientific evidence.

Insurance Legislation

In Alabama, The Birmingham News reports on legislative action Tuesday:

Senators voted 32-0 for a substitute bill that directs insurance companies to offer plans that include coverage for autism treatment. Businesses could choose to offer the coverage as part of their insurance options for employees, or parents could pick it up as a rider, said sponsor Sen. Cam Ward, R-Alabaster.

Advocates originally were pushing a bill that would have mandated the coverage.

"I think it's a fair compromise. Is that everything we want? No," said sponsor Sen. Cam Ward, R-Alabaster. However, he said, "This provides more coverage than the autism community has ever seen."

In Alaska, AP reports:

Rep. Wes Keller, chairman of the House Health and Social Services Committee, said Wednesday that a bill requiring health insurance companies to provide coverage of top-notch treatment for autism spectrum disorders is unlikely to move through his committee this session.

At a hearing Tuesday, the back rows of the room were filled with the usual legislative staffers, but a crowd of activists, parents of kids affected by autism and a handful of children were also in attendance as part of an impassioned plea for the passage of SB74.

"This job is a heartbreaker," Keller said in an interview with The Associated Press. "With all that passion and feeling, it's easy to do something that's not effective, but this is a bad policy."

...

Some insurance companies voiced opposition of the measure, and Keller sympathizes with their position.

In West Virginia, WVNS-TV reports:

West Virginia University has one of the top doctoral training programs in behavior analysis in the country, yet there are only 28 Board Certified Behavior Analysts (BCBA) in our state.

The bills signed into legislation earlier this month not only makes treatment more affordable, it also makes West Virginia a more attractive place for analysts to work.

"Our surrounding states have had legislation that covers insurance for autism for awhile," said WVU Assistant Professor Claire St. Peter, Ph.D. "So when we were graduating students, well they were being drawn to other states."

WVU developed a Masters program in hopes of giving students the skills needed to combat the lack of autism services in rural areas but without insurance coverage, most of those students left the state.

"So we were graduating students who were from West Virginia, who wanted to stay in West Virginia, who couldn't just find a job because there was no coverage and the families couldn't afford it," St. Peter said.

In North Carolina, WSOC-TV reports on a proposed mandate.

Alaska Mandate Bill: A Hearing and a Setback

The Anchorage Daily News reports on an Alaska House hearing on autism mandate legislation:

Two of the witnesses, parents of children with autism, openly wept as they asked the committee to help save families by reducing the financial struggles they faced, even if they couldn't help with their emotional burdens.

One was BreeAnn Davis, a mother testifying by phone who said that if the bill didn't pass this year, it would be like a death sentence.

The other was a legislator more accustomed to being on the other side of the table, Rep. Dan Saddler, an Eagle River Republican who spoke of being forced to split up his family so his son could get autism treatment in a state with better facilities.

Five of the seven members of the Health and Social Services Committee are sponsors of the measure, but when the hearing ended, Rep. Wes Keller, R-Wasilla, its chairman, said he would hold the bill and gave no indication of when -- or if -- he would bring it up again.

KTUU-TV offers more (VIDEO HERE):

A bill that would mandate autism insurance in Alaska suffered an unexpected setback Tuesday night, when House Health and Social Services Committee Chair Rep. Wes Keller (R-Wasilla) decided to keep the measure bottled up in committee -- leaving parents of autistic children deeply disappointed.

With just five days left in the regular session, it is now extremely unlikely that Senate Bill 74 -- which would require insurance companies writing policies in Alaska to provide coverage for autism -- will see the light of day this session.

The measure is not dead, but it's on life support.

Backers' mood Tuesday was one of "shock" and "deep disappointment" according to Beth Richardson, the mother of a 6-year-old who has benefited greatly from early detection and treatment of autism. Statistics show that 50 percent of all children diagnosed with the disease can attend a regular first-grade class rather than special education.

Autism and Obesity

A new study linking autism and obesity is getting a great deal of media attention. CBS reports:

Autism is more likely to occur in children whose mothers were obese while pregnant, new research suggests.

The study, one of the first of its kind, involved about 1,000 California children, ages 2 to 5. Researchers affiliated with the UC Davis MIND Institute looked at their mothers' medical records and examined the association between obesity and autism. Women who were obese during pregnancy were about 67 percent more likely than normal-weight women to have autistic children, the study showed. Obese moms also faced double the risk of having children with other developmental delays.

Obesity isn't the only risk factor found for pregnant moms in the study. Researchers also looked at prevalence of gestational diabetes and found pregnant moms with diabetes had nearly 2 1/3 times the chance of having a child with developmental delays compared with healthy mothers. Although the proportion of diabetic mothers who had a child with autism was higher, the numbers did not reach statistical significance.

The study was published online in the April 9 issue of Pediatrics.

An Interstate Insurance Problem

WTOL reports on the Michigan mandate:

Eleven year old Jarret Breznai is autistic.

His mom describes Jarret as funny, sweet and more honest than most kids.

Ann Breznai says his autistic diagnosis almost ate up the family savings. "Just off the bat it cost us $5,000 to get the diagnosis. They didn't even cover that, the diagnosis," said Breznai.

That's when Ms. Breznai became a member of AIM: Autism Insurance Michigan.

Her group urged Michigan legislators to include autism under health insurance plans. The measure was recently passed. "Any insurance company that writes a policy in Michigan has to include treatment and therapy for autism," she said.

Ironically, that's why Jarret will not be covered. Both his parents work in Toledo. Ohio doesn't have autism coverage. "Which means our policies come out of Toledo but I'm a Michigan resident" says Ms. Breznai.

NOTE:  THE WTOL REPORT SHOULD HAVE SAID THAT MS. BREZNAI FOUNDED AIM. 

Prevalence: The Local Angle

The DSM revision and the CDC report have inspired a number of local news stories about the increasing prevalance of autism.  Some examples:

In Salem, Oregon, The Statesman Journal reports:

In the Mid-Valley, Tim McGee, manager of mental-health services at the Easter Seals Children’s Therapy Center in West Salem, said he didn’t have hard numbers, but it’s easy to say the numbers of autism diagnoses have gone up. The center provides services such as speech and language therapy and occupational therapy.

“It used to be there was just a couple of us mental-health therapists who saw children on the spectrum. Now we have 18 therapists part-time and full-time who will work with children on the spectrum.”
...
Amanda Smith, special-education coordinator for students services in Salem-Keizer School District, said the district has seen a “dramatic” increase in the number of students locally with autism.

She said in 2006, 18 percent of the district’s special-education students had autism. By 2010, 51 percent of special-education students were identified as having autism. [emphasis added] The district has 6,000 students enrolled under the category of special education.

"We are feeling it,” Smith said. “We’re quite proud of how we serve these students. We offer a variety of programs and services, partly out of the growth of autism in our student population.”

The Oregon Department of Education reported Wednesday that autism remains one of the fastest-growing disabilities in Oregon schools. Their numbers have increased from 317 students with the diagnosis in 1990-91 to 2,650 students in 2000-01. This year, the number is 8,694. [emphasis added]

In Maine, The Morning Sentinel reports on Winslow Elementary School:

Amy Benham, a special education teacher who heads the autism program at the elementary school, said Wednesday she was aware of the latest estimate.

"One in 88," she said. "It's scary stuff."

Over the past six years, Benham has seen the population of autistic students rise from three to its current enrollment of 10. She said the school's program is prepared to meet the growing challenge through a mix of emerging technologies, hard work and collaboration with parents.

In North Dakota, The Grand Forks Herald reports:

The Grand Forks School District, too, has seen a rise in the number of children with autism, with 76 out of 6,823 enrolled students falling into that category, according to Tori Johnson, the district’s director of special education. That’s about one in 90.

“That number keeps going up,” she said.

They may go up some more this year. Altru Health System is setting up a series of free screenings for children 12 and younger. The goal is to identify children with this disorder as soon as possible, to maximize the effectiveness of treatment, according to Diane Gunderson, manager of Altru’s Rehab Outpatient Therapy Services.

A key issue with early detection is the resistance of parents fearful of what the truth may mean for their children.

“The embarrassing thing is when parents don’t want to realize their kid is different,” said Bob Concannon, whose son Bobby, now a Central High School student, was diagnosed with Asperger syndrome in kindergarten. Asperger is a disorder that falls within the autism spectrum.

The district deals with parents’ resistance by classifying some students as “non-categorical delay,” which includes children 10 and younger who struggle in school and may have learning and emotional disabilities. Some may have autism but the condition has not been diagnosed.

“It’s a way for us to serve them without identifying them specifically in a certain category,” Johnson said. [emphasis added]

Dismissing Autism

Amy Harmon writes at The New York Times:

THE report by the Centers for Disease Control and Prevention that one in 88 American children have an autism spectrum disorder has stoked a debate about why the condition’s prevalence continues to rise. The C.D.C. said it was possible that the increase could be entirely attributed to better detection by teachers and doctors, while holding out the possibility of unknown environmental factors.

But the report, released last month, also appears to be serving as a lightning rod for those who question the legitimacy of a diagnosis whose estimated prevalence has nearly doubled since 2007.

As one person commenting on The New York Times’s online article about it put it, parents “want an ‘out’ for why little Johnny is a little hard to control.” Or, as another skeptic posted on a different Web site, “Just like how all of a sudden everyone had A.D.H.D. in the ’90s, now everyone has autism.”

...

 According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite. Twenty percent of the 8-year-olds the agency’s reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis. The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis. In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate — 1 percent — in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.

"Please, can you help me go to college? I am an American. I am autistic."

Fox News reports:

At 18 months old, Billy Pagoni was diagnosed with severe autism. The disorder was so disabling, he had trouble speaking.

Today, he’s 20 years old, about to graduate from high school in Naples, Fla., and wants more than anything to go to college. But, so far, every school he and his mother have contacted have told them there is no program available for his specialized needs.

With seemingly no opportunities available for him, Billy has made a public plea to President Obama to help him enroll into a college or university and continue his education.

“Dear President Obama, my name is Billy Pagoni,” Billy implored on a video posted on Facebook. “I want to be a baker. I am a great student. I never miss a day of school. I get A’s on my report card. Please, can you help me go to college? I am an American. I am autistic.”

His mother, Edith Pagoni, explains a problem:

While universities currently offer specialized programs for blind, deaf, ESL and high-functioning Asperger’s students, there are little to no options for more severely autistic children, according to Pagoni.

When you look online,” she explained, “it looks like, yes, there are programs for these students. But what universities actually have are programs for extremely rare, high-functioning, savant-like autistic children. There’s nothing for kids who have splintered skills – for those who are excellent with computers, but may need a subject like geography broken down for them.”

... 

“There’s a complete generation of these kids who are aging out of school, who will have nothing to do,” Pagoni said. “If colleges had a program for autism that addresses specific skills for these kids, there would be people at the door waiting.”

Alabama Update

WIAT in Birmingham covers State Senator Cam Ward's legislation for an autism insurance mandate for Alabama:

 

Social Class and Trajectories

Dr. Claire McCarthy writes at The Boston Globe:

A study just came out with some very interesting information about how children with autism do or don't get better over time. Guess which ones did better?

The ones whose mothers were white and educated.

It's true. Researchers looked at the records of more than 6000 children ages two to 14 with autism followed by the Department of Developmental Services in California. They found that for the most part, even though they made progress, children who were low-functioning when they were diagnosed stayed low-functioning. Children who were high-functioning at diagnosis made more progress. And then there was a really interesting group, about ten percent of the children, who they called "Bloomers". Bloomers started out low-functioning, and then made rapid progress and ended up as high-functioning.

The researchers also had birth data about the children, which gave them information about the mothers: their age, place of birth, race, education level, and whether or not they were on Medi-Cal, the public insurance for low-income people. This is where it got really interesting. The researchers found that:

• Low-functioning children were more likely to have mothers who were minority/foreign born, less educated, and on Medi-Cal
• High-functioning children were more likely to have mothers who were white, more educated, and not on Medi-Cal
• Bloomers were more likely to have mothers who were white and educated.

Licensing Legislation in Louisiana

The Louisiana chapter of the Autism Society reports:

Board Certified Behavioral Analysts Show Strong Opposition to Senate Bill 185:

Senate Bill 185: Louisiana State Board of Examiners of Psychologists (LSBEP) has introduced legislation known as S. B. 185, or the “Board Certified Behavioral Analyst Practice Act.” sponsored by Senator Dan Claitor. This bill would require behavior analysts to be licensed by the Louisiana State Board of Examiners of Psychologists (LSBEP). Clinical psychologists who make up the LSBEP would determine the requirements for the license and oversee the practice of applied behavior analysis (ABA).

Board Certified Behavioral Analysts (BCBA) feel that just as the practice of clinical psychologists is properly regulated by members of that profession. BACB credentials are already recognized in many laws and regulations around the U.S. that enable BCBAs and BCBAs (under the supervision of BCBAs) to practice and be reimbursed by many funding sources without interference from other professions.

BSBAs in Louisiana report that SB 185 will make it difficult for Louisiana to recruit or retain BCBAs. Currently, Louisiana has only 56 credentialed behavior analysts in the state.

One rule adopted recently by the Louisiana Board of Elementary and Secondary Education (LBESE) allows public schools to hire BCBAs as employees. The LSBEP was the only opponent to that rule, arguing that ABA is in the scope of practice of licensed psychologists so behavior analysts should be licensed as psychologists or supervised by psychologists or physicians.

Supporters of that rule argue that the practice of ABA is very different from the practice of clinical psychology, and they feel the supervision of behavior analysts by licensed psychologists is unnecessary and costly.

WAFB in Baton Rouge describes how the bill died:

Employment of the Disabled

Yesterday, the National Disability Rights Network (NDRN) issued a report saying that federally-funded programs are moving people with disabilities into sheltered workshops instead of opening meaningful employment opportunities.

“There is a total disconnect between what governments say they want to accomplish in terms of employment for people with disabilities and how they are actually spending taxpayer dollars,” said Curt Decker, NDRN executive director.

The report, Beyond Segregated and Exploited is a follow up to a report released last year that examined the issue of segregating working people with disabilities in sheltered workshops and the use of the subminimum wage to exploit their disability for the financial gain of employers. The new report is an update on progress to end those practices and move toward a system that encourages integrated employment options that pay competitive wages.

This report also provides additional insight into the complex and confusing system that pumps millions of dollars into sheltered work despite good national public policy meant to encourage integration and competitive employment. The report follows money designated to be spent on integrated employment as it winds its way from the Centers for Medicare and Medicaid Services (CMS) and the Rehabilitation Services Administration (RSA) to the states, state agencies, and finally into sheltered workshops.

A media advisory from the US Labor Department:

Three states — Iowa, Oregon and Tennessee — will receive the first round of grants through the program to assist with planning, policy development and capacity building. In addition to receiving technical assistance from national experts in employment of people with significant disabilities, they will receive mentoring from officials in the state of Washington, which also will receive a grant to mentor the selected states. "Employment First" aims to promote the development of state policies so that integrated employment is the first option of service for individuals with significant disabilities. Integrated employment refers to jobs held by people with disabilities in typical workplace settings in which the majority of individuals employed do not have disabilities, those with disabilities earn at least the minimum wage and they are paid directly by the employer.

Autism, Employment, and the Life Cycle

CNN Headlline News discusses challenges over the life cycle, including employment:

In Rochester, Minnesota, The Post-Bulletin reports on the need to help HFA adults navigatee the job market:

“They need people in their life to help them stay on track, and if they have that support, they are the Einsteins of the world, the Bill Gates of the world. They have phenomenal potential to become contributors to society,” said Susan Powers, co-founder of Social Odyssey, an Olmsted County-based support group for family member and individuals with high functioning of autism.

Powers' group is asking local lawmakers to support a pilot program aimed at providing individuals with Asperger Syndrome and other autism spectrum disorders with the jobs skills training and support they need to be successful. At a rally at the Capitol on Monday in honor of World Autism Awareness Day, Rochester Republican Sen. Carla Nelson touted her bill to set up the pilot program. A former special education teacher, Nelson said these students often excel in school thanks to the support in place to help them. The hope is that if there are resources available to help individuals in the workplace, they can continue to succeed. Her bill would allocate $60,000 to provide employment support to these individuals in Olmsted County

Previous posts have discussed businesses that hire ASD people who can focus on detail. Bloomberg Business Week reports:

The newest entrant into the space in the U.S. is a Los Angeles-based software and design firm called Square One. The company has a small pilot program working to design a software-testing training program for people on the autism spectrum. The project grew out of conversations between company co-founder Chad Hahn and his wife, Shannon, who works with the developmentally disabled. Hahn, along with experts his wife led him to, has put together a software-testing curriculum that he’s now in the process of teaching to an inaugural class of three. The course he’s designed relies not on written instructions but on a software tool called iRise to create simulations of the sort of problems the trainees would confront in an actual work setting.

Hahn is also trying to develop a work environment that would be friendly to those on the autism spectrum, for whom the social interactions of a typical workplace can trigger paralyzing anxiety. For some people, Hahn says, that might mean ensuring that there’s a quiet room or a set of headphones they can put on to block out the buzz around them; for others it’s making sure there’s a counselor there to talk to whenever they need it. Hahn says he’s in talks with Warner Bros. and LegalZoom about software-testing contracts.

But what’s most original about Square One’s approach is how resolutely bottom-line-oriented Hahn is. Specialisterne only worked because of generous Danish subsidies for employing the developmentally disabled, and Aspiritech is a nonprofit. But for the time being Hahn is committed to the for-profit route.