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.