Brain Differences

New research suggests that autism may be different in men and women, and that autism may be different from Asperger's.

The Los Angeles Times reports [h/t JM]:

Do women who are on the autism spectrum have brains that are more “masculine”?

A team of researchers at Cambridge University's Autism Research Center has found striking similarities between the structural anomalies found in the brains of women with autism spectrum disorder and neurobiological characteristics known to be different between males and females in general.

The results, published online Thursday in the review Brain, partially confirm aspects of an “extreme male brain” theory of autism put forth by Cambridge neuroscientist Simon Baron-Cohen and his colleagues. But other results of the study appeared to shake the theory -- scans of the brains of men with autism didn’t exhibit a discernible “extreme” of masculine architecture.

At the least, the study adds significant evidence that there are fundamental differences between the brains of women with autism and those of their male counterparts, and highlights the need to include more women in studies. Although males are disproportionately represented in the population of autistics by a ratio of 2:1 or 3:1, the gender disparity in research samples hovers closer to 8:1, according to the study authors.

The Huffington Post reports on an EEG study showing Asperger kids have brain connectivity patterns different from those of autistic kids.

"We looked at a group of 26 children with Asperger's, to see whether measures of brain connectivity would indicate they're part of autism group, or they stood separately," said study researcher Dr. Frank Duffy, a neurologist at Boston's Children Hospital. The study also included more than 400 children with autism, and about 550 typically-developing children, who served as controls.

At first, the test showed that children with Asperger's and those with autism were similar: both showed weaker connections, compared with typically-developing children, in a region of the brain's left hemisphere called the arcuate fasciculus, which is involved in language.

However, when looking at connectivity between other parts of the brain, the researchers saw differences. Connections between several regions in the left hemisphere were stronger in children with Asperger's than in both children with autism and typically-developing children.
The results suggest the conditions are related, but there are physiological differences in brain connectivity that distinguish children with Asperger's from those with autism, according to the study published Wednesday (July 31) in the journal BMC Medicine.

Q&A: Autism and the Affordable Care Act

At Stateline, Christine Vestal offers some q&a on autism and the Affordable Care Act:

Will existing state insurance mandates apply to policies sold on the state insurance exchanges?

Maybe.

The ACA says state insurance mandates in place before Dec. 31, 2011 may apply to policies offered on the exchanges. If a state requires commercial carriers to cover ABA, that same requirement may be applied to policies sold on its exchange.

However, when the administration directed states to define “essential benefits,” every state either chose a “benchmark plan” (defined as the small business plan in the state with the most beneficiaries) or let the federal government choose a similar plan for them. If a state’s benchmark plan includes a requirement to cover ABA and other autism treatments, then all the plans on its exchange must do the same.

But in 11 of the 34 states with autism mandates, the benchmark plan does not include autism coverage, according to an analysis by advocates Autism Speaks. In those states, as well as the 16 states without autism mandates, state officials have the option of adding autism coverage as a required “supplemental” plan.

In Ohio, where the legislature is currently considering an autism bill, Gov. John Kasich, a Republican, mandated autism coverage by executive order in December 2012. Alaska’s insurance chief, Bret Kolb, wrote to state lawmakers last month confirming that Alaska’s newly-minted autism mandate would apply to policies sold on the federally-run exchange.

How do state mental health parity laws affect autism patients?

According to the National Conference of State Legislatures, every state but Wyoming now has a mental health parity law on the books, requiring that when insurers cover mental illness and/or substance abuse they do so on an equal financial basis with physical illnesses. A federal law – the Mental Health Parity and Addiction Act of 2008 – also requires equal treatment, but the Obama administration has yet to complete the federal rules that would enable states to enforce it.

Parity laws only require carriers to pay as much for mental health treatments as they pay for medical treatments, with the same co-pays, deductibles and coverage limitations. The laws do not require carriers to cover specific treatments, such as ABA treatments. Still, state parity laws, combined with mandates, will maximize coverage for any given child.

Autism, Kansas, and the Affordable Care Act

Kansas does not have an insurance mandate.  The Kansas City Star reports on an insurance industry argument against it:  The Affordable Care Act.

In Kansas, insurance companies have been urging lawmakers to ease up on any new mandates until it’s clear how the new Affordable Care Act will affect premiums.

“It’s not the best time to be looking at new requirements for health insurers,” said Mary Beth Chambers, spokeswoman for Blue Cross and Blue Shield of Kansas.

But some Kansas lawmakers, including conservatives who generally oppose government mandates, want to push forward.

They argue the state will save money in the long term by treating kids now and getting them on their way to an independent life.

“It is the fiscally and morally conservative and responsible thing to do for Kansas kids with autism and their families,” said Rep. John Rubin, a Shawnee Republican.

However, Kansas insurance regulators have warned lawmakers that the state might have to pick up the cost of any new mandate that would be a part of basic insurance plans sold under the Affordable Care Act.

Governors, Employment, and Disability

Many posts have dealt with employment of people with autism and other disabilities. Delaware Governor Jack Markell, outgoing chair of the National Governors Association talks with Judy Woodruff (the mother of a person with spina bifida) about a report titled A Better Bottom Line: Employing People with Disabilities.

.

From the report:

Private and nonprofit providers train and assess talented individuals, including people with disabilities. Some firms serve people with disabilities exclusively. For example, Manpower Group launched a national program called Project Ability to transition people with disabilities into sustainable employment with leading employers nationwide.36 A company called Specialisterne is setting up in the United States to enable 1 million jobs for people with autism and similar challenges through social entrepreneurship, corporate-sector engagement, and a global change in mindset.37

 36 “Manpower, “Manpower Launches Project Ability to Find Employment for People with Disabilities,” Press Release, June 15, 2010,http://press.manpower.com/press/2010/project-ability.

37 Specialist People Foundation, http://specialistpeople.com.

A Promising Employment Study

Most of the news on employment of ASD people has been bleak.  In The Journal of Autism and Developmental Disorders, Paul H. Wehman and colleagues offer a rare bright spot.  The abstract:

For most youth with autism spectrum disorders (ASD), employment upon graduation from high school or college is elusive. Employment rates are reported in many studies to be very low despite many years of intensive special education services. This paper presented the preliminary results of a randomized clinical trial of Project SEARCH plus ASD Supports on the employment outcomes for youth with ASD between the ages of 18–21 years of age. This model provides very promising results in that the employment outcomes for youth in the treatment group were much higher in non-traditional jobs with higher than minimum wage incomes than for youth in the control condition. Specifically, 21 out of 24 (87.5 %) treatment group participants acquired employment while 1 of 16 (6.25 %) of control group participants acquired employment.

A Bad Autism Charity

A number of posts have discussed autism charities.  Most do fine work, but some are not on the level. The Tampa Bay Times reports:

Autism Spectrum Disorder Foundation is one of the worst charities in America when it comes to spending large amounts of cash on for-profit solicitation companies.

But that fact has been obscured in documents filed with state regulators.

The Times and CIR took a closer look at the charity after readers suggested we investigate.

IRS tax documents show that from 2009 to 2011, the charity raised $7.6 million through its solicitors. More than 90 percent of that was paid directly to for-profit solicitation companies hired by the charity.

Its history of using high-cost fundraisers for most of its income would be enough to make Autism Spectrum one of the nation's worst charities. The Times/CIR rankings are based on the amount of money charities spend on fundraisers. But because state reports filed by one of the charity's solicitors understated Autism Spectrum's fundraising cost, it did not make the list.

The charity was founded in 2007 and is run by Michael Slutsky. The organization's mission is to educate the public about autism and provide financial assistance and educational material to help detect and treat the disease.

It provides scholarships for autistic children to attend camp, sends holiday gift cards and gives 'Early Detection Kits' to agencies that work with young children, according to its website.

But of the $7.6 million raised by solicitors, less than 3 percent has been spent on direct cash aid, tax records show.

Data on Age of Diagnosis

At Left Brain/Right Right, Matt Carey writes:

Autism is supposed to present before age 3. One might then think that most autistics would be diagnosed by age three, but this is not the case. The average age of diagnosis is above age three. Consider the recent National Survey of Children’s Health. This survey was the basis for the recent autism prevalence estimate of 1 in 50 in the U.S.. When were these kids diagnosed?

... Most kids were diagnosed after age 3. Many after age 5. A significant minority after age 10.

One would hope that parents, pediatricians, family members, day care workers, pre school staff and more would raise flags before kids enter school. But not all kids go to day care or preschool. One would hope that when kids get to kindergarten they might be referred for evaluations if they show signs of autism. One might think that a school nurse or a school psychologist would test a kid and inform parents of the possibility of autism. But that doesn’t seem to happen. Out of over 2000 autistic kids in the survey, only 130 were identified by a school psychologist.

Perhaps in some cases parents are being referred to an outside psychologist for diagnosis. But there isn’t strong evidence in the age distribution that a lot of kids are being diagnosed at ages 5 and 6, when they enter school. Don’t get me wrong, teachers and school staff do a lot. But they have a lot to do and autistic kids in regular and special education are not getting identified as early as could happen.

It can be done. Yvette Janvier demonstrated this in underserved communities, but the need is there in all communities.

“Study Finds Early Childhood Educators Can Effectively Screen Students For Autism In Underserved Communities

FDA Defines "Gluten-Free"

The Los Angeles Times reports:

With one-third of Americans trying to avoid the protein, the "gluten free" label holds increasing cachet. On Friday, the federal government issued an official definition of that claim, bringing a measure of uniformity to a burgeoning industry.

According to the Food and Drug Administration, a food or other substance can be labeled "gluten free," "no gluten," "without gluten" or "free of gluten" if contains less than 20 parts per million of it. Manufacturers have until Aug. 5, 2014, to comply with the new definition.

...
Some parents believe their children's autism symptoms improved when they stopped eating gluten and casein (a protein found in milk products), though there's no scientific evidence to support their observations.

See the FDA release. 

Bill Proposes a Study of Vaccines

At the House Oversight hearing last year, Representatives Bill Posey (R-Florida) and Carolyn Maloney (D-NY) took the anti-vaccine side. At Left Brain/Right Brain, Matt Carey writes about HR. 1757 by Posey and  Maloney, which seeks a comparative study of vaccinated and unvaccinated populations.

“(11) There are numerous United States populations in which a practice of no vaccination is followed and which therefore provide a natural comparison group for comparing total health outcomes.”

If you think one of the “numerous” populations considered are the Amish, you’d be correct. They are mentioned later in the bill. They’ve been mentioned in previous versions of the bill. Even though the Amish do, indeed, vaccinate. There was some very poor journalism promoting the idea that the Amish don’t vaccinate (and that their are no autistic Amish, another incorrect statement).

The bill then goes on the instruct the Secretary of Health and Human Services to initiate a study of health outcomes in vaccinated and unvaccinated populations.

... 

(d) Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish, members of clinical practices (such as the Homefirst practice in Chicago) who choose alternative medical practices, practitioners of anthroposophic lifestyles, and others who have chosen not to be vaccinated.

Why would the named groups be any more valuable to researchers than “…others who have chosen not to be vaccinated”?

It’s a useless clause. It’s worse than useless. One would want to study populations as similar in all respects save vaccination as possible. In their press release SafeMinds stated, ” Every 7th grader knows you cannot do a proper experiment without a rigorous control group that can be compared with the exposed group.” Choosing a group which is specifically different from the study group in areas other than the variable of interest would be, by definition, non rigorous. I’ll leave it to the reader whether every 7th grader would understand that, as some well educated adults do not.

...

The bill is essentially the same as the previous incarnations. The “transparancy” clause is new. Also new is this:

(b) Rule of Construction- Nothing in this Act shall be construed to authorize the conduct or support of any study in which an individual or population is encouraged or incentivized to remain unvaccinated.

Yes, they are making it clear that they are not asking for a prospective double-blind study where one group would be intentionally unvaccinated. I’d love to know how that new clause was inserted. It’s probably the simple reality that such a study is unethical and would make this bill dead on arrival.

United States of Autism

A number of posts have discussed fictional films and documentaries about autism.  Here is a release from The United States of Autism:

After the sizzling US domestic success of the award winning film “The United States of Autism”, it will begin its Oscar qualification run in New York City and LA from August 9th – 16th. With multiple daily showings during the week at Quad Cinema in NYC’s Greenwich Village and Laemmle’s Playhouse 7 in Pasadena, CA, it seeks to be the first documentary focused on autism to ever win an Academy award at the 86th Annual Academy Awards on March 2nd, 2014 in Hollywood, CA.

The film follows Richard Everts’ 11,000 mile, 40 day journey across America to visit twenty families and individuals living with autism. Interviewees come from a broad cultural spectrum from Mormon to Muslim and Hispanic to Chinese. Each person shows how autism has shaped their world, sometimes for better, sometimes for worse, yet always with significance. What Everts learns along the way changes not only his life, but the lives of those he meets, forever.

The United States of Autism donates 25% of net proceeds from each theatrical screening or up to 100% net of a fundraising private event to a local family/individual/organization affected by autism. It’s helped raise over $20,000 for local autism groups around the country to date. For more information on hosting or to request a screening, go to http://www.usofautism.com/the-screenings

Question

This blog has had a huge spike in pageviews over the past couple of days, and I'm not sure why. I'm certainly not complaining but I'm curious about the reason.  Has a bigger website linked to it?  If you know, please email me at jpitney@cmc.edu.

Abuse in Sweetwater

In South Florida, WTVJ reports on abuse:

Police discovered Thursday that a 30-year-old autistic man was being kept in “dungeon-like conditions” in a Sweetwater trailer home, authorities said.

Gladys Jaramillo told police that on numerous occasions she has locked her son in his room with iron bars and a dead bolt so she could go out with her boyfriend and enjoy herself, her arrest affidavit said.

The 56-year-old mother faces charges of aggravated abuse and neglect on a mentally disabled adult and false imprisonment, police said. She was being held on $15,000 bond early Friday. It wasn't immediately known whether she has an attorney.

AP reports:

Investigators said Jaramillo also admitted giving her son sedatives “so he would fall asleep throughout the time she was away,” the report said.

The man was taken to a hospital with scratches and bruises and is being evaluated to see if he may need any services going forward. The Department of Children and Families is working with the Agency for Persons with Disabilities to find an appropriate place for the son to live, such as with a family member or a group home, after he leaves the hospital, DCF spokeswoman Lissette Valdes-Valle said.

The case will go to court in the next few weeks, where a judge will appoint a guardian for the man.

...

The son was on a waiting list to receive services from the Agency for Persons with Disabilities, the person familiar with the investigation said. Services can include adult day care; having a companion come to the home to help with things such as cooking and cleaning; occupational therapy; and construction improvements so the patient can be more independent in their home, according to the agency’s website.

Video from WBFS-TV:

Cuomo Administration Backs Down in Licensing Dispute

Autism Speaks reports that the administration of New York Governor Andrew Cuomo has retreated from its earlier position required that ABA practitioners obtain a state license in order to qualify for insurance reimbursement under the state mandate. New York has no ABA license.

Autism Speaks, through its Legal Resource Center, urged the state agency to drop the licensing requirement earlier this year, arguing it was in clear violation of the 2011 law which specified that national certification by the Behavior Analyst Certification Board (BACB)would be sufficient for ABA practitioners to provide services in New York.

When DFS proceeded with the regulations, Autism Speaks and other advocates, such as the New York State Association for Behavior Analysis (NYSABA) worked with Morelle and Fuschillo to introduce legislation creating a New York ABA license. The two lawmakers managed fast passage of the licensing bill through both houses of the Legislature in June.

With the licensing bill about to be presented to Governor Cuomo, DFS, which had continued working with Autism Speaks and other advocates, issued a new regulation making clear that BACB certification, as specified under the original 2011 law, would now be sufficient. The new regulations took immediate effect, enabling families with state-regulated health insurance coverage to now access affordable ABA care for their children with autism.