A Case for Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

Zoë Kirsch at Slate:

Recent research suggests that, by 2, toddlers can begin to reveal signs of autism: an absence of big smiles or, as in Jonathan’s case, an abrupt loss of speech and a lack of interactive gestures. But most children with autism aren’t identified until after they turn 3 (the median age of first diagnosis is 3 years and 10 months). By then, in most states, kids are no longer eligible for the array of services that Jonathan gets on a weekly basis—a delay that robs them of time that could have been used to catch up to peers.
...

Research shows that black and Hispanic kids are less likely than their non-Hispanic white counterparts to be evaluated before 3, and that, on average, black and Latino children are diagnosed later than their white peers — with a delay of 1.4 and 2.5 years, respectively. Kids who communicate in a language other than English at home are 48 percent less likely than English speakers to be referred to early intervention. It’s a stark example of how children who haven’t even learned to brush their own teeth may already suffer due to the color of their skin or the language that they speak.

...

In 2007, the American Academy of Pediatrics recommended that doctors screen all toddlers for autism at their 18- and 24-month visits, when indicators start to stabilize. Since then, the average age of diagnosis in some communities has dropped by roughly a year and a half, according to a 2016 study by researchers at Albert Einstein College of Medicine in the Bronx.
...

Studies show that kids who start treatment early demonstrate increased social and cognitive functioning which can, in turn, result in more independence. In a recent paper, researchers at the New England Center for Children analyzed gains among dozens of children who began the same early intensive behavioral intervention at ages 1, 2, and 3, and found that those who started therapy youngest saw the most improvement.

...
Early signs of autism can masquerade as the typical struggles that bilingual kids confront when learning a second tongue: The key to distinguishing one from the other is knowing that a bilingual child with a learning impairment will struggle in both languages, not just one.

There is no guarantee of dramatic progress.

A study out of the Bronx found that just 1 in 14 toddlers who received early intervention services improved to the point that they no longer needed services in first grade

"National Call-In Day: No Tax on Disability"

The Politics of Autism includes a discussion of tax issues.

From the Autism Society:

Please join the Autism Society and advocates across the country on Wednesday, November 29th for National Call-In Day: No Tax on Disability!

Background
On November 17, the House of Representatives passed its version of a tax bill. The Senate Budget Committee passed their version today. A final vote in the Senate is expected Thursday. Both bills are extremely harmful to people with disabilities. A conference committee may have to work out the differences between the bills, meaning that provisions in either bill could end up in a final tax bill. Both bills are harmful because they:

– Increase the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.
– Lead to cuts to Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to reduce the deficits and debts incurred by tax cuts.

While the House tax bill does not directly cut Medicaid, the actions it takes will have the same or even worse effect on Medicaid and other services and supports for people with disabilities. The House bill that has many provisions that harm people with disabilities and their families by eliminating the following tax deductions and credits:
– Deduction for high medical expenses, which is critical to many people with disabilities and their families
– A $2,400 tax credit businesses can get when hiring someone with a disability
– A $5,000 tax credit for businesses that make their businesses accessible to people with disabilities (Architectural Barriers credit)
– Reduces incentive to contribute to non-profit agencies that often provide support for people with disabilities and their families (charitable giving)

The Senate bill is even worse. It includes a provision to repeal the individual mandate to obtain health insurance. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more. Repealing the individual mandate will:
– Result in almost 14 million people losing health care coverage (according to an analysis by the Congressional Budget Office (CBO)).
– Increase health insurance premiums for those purchasing coverage on the exchange by at least 10% for the unforeseeable future (also according CBO)·
– The CBO analysis also says the repeal of the individual mandate will save approximately $330 billion (because of the large number that will not be insured) over ten years.
– This money will be used to pay for a making the corporate tax cuts permanent and to cut to the tax rate for corporations and individuals on the upper income scale.
– According to the Tax Policy Center, the Senate plan shows that 87 million households earning less than $200,000 will get a tax increase under the plan

We have a VERY short timeline to stop this very harmful and unpopular legislation.

TAKE ACTION
Contact your Senators NOW. We only have days to defeat this! Autism Society is co-sponsoring a national call in day on Wednesday, Nov. 29. Call your Senators. Use the Capitol Switchboard number 202-224-3121 and ask for your Senators.

National Call-In Day

The Politics of Autism includes a discussion of tax issues.

From the Autistic Self-Advocacy Network:

Right now, Congress is trying to ram through their tax reform bill — and if it passes, it’ll be devastating to people with disabilities. We can still stop this bill from passing, but only if we take action together. This Wednesday, November 29, is a national disability community call-in day. We need your voice.

Here’s a recap of what the bill does:

• Repeals the “affordable” part of the Affordable Care Act. Getting rid of the individual mandate means 13 million people will lose health insurance, and premiums will increase by 10% on average.
• Raises the deficit, creating an excuse to slash Medicaid and more. The tax bill raises the deficit by $1.5 trillion. Congress’ proposed budget tells us exactly how they plan to pay for this: by cutting Medicaid and health care funding by between $1.3 trillion and $1.9 trillion.
• Automatically guts vital services. If this bill passes, it will trigger automatic cuts to services and programs that many people with disabilities depend on, including food stamps, special education funding, and Medicare.

No matter what talking points come out of Congress, their end goal is clear: to give massive tax cuts to billionaires and corporations by decimating basic services that everyday Americans depend on. That’s why we’re participating in Wednesday’s national call-in day. Here’s how to join us:

Use ContactingCongress.org to find your Senators’ phone numbers. When you call, you can use our script below, and if you don’t speak, you can call using your AAC device, or get a friend to call in and read your message.

ALSO SEE THE FACEBOOK PAGE 

Self-Employment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed efforts to provide them with training and experience. 

Clare Ansberry at The Wall Street Journal:

So, jobs are few for people on the spectrum, and adults with the condition have an estimated 80% to 90% unemployment rate. “One of the ways people choose to address this is by creating a business that allows them to be self-employed,” says Angela Geiger, CEO of Autism Speaks, an advocacy and support organization, which has a business-accelerator program.

By launching their own companies, people on the spectrum can create a work environment that fits their comfort level and doesn’t force them to navigate the traditional, heavily social office setting. Very often, though, their key to success is not to try for independence, but to build up a network of supporters who will help them with the business.

“It’s how interdependent can you get,” says Mr. Raede. “Try to get as many people you can rely on, not one. I want to have 10,000 people I know and can rely on.”
His online community is built on that concept, offering support groups and online courses to facilitate learning on a mass scale.

One of the best ways those supporters can help someone on the spectrum become self employed is to identify and build on their skills instead of trying to change behavior or have them do something they can’t, says Cary Griffin, co-founder of Griffin-Hammis Associates, a Florence, Mont., consulting firm that specializes in developing self-employment opportunities for people with disabilities. If a person can’t manage bookkeeping or marketing, for instance, others can.

Ominous Tax Legislation

The Politics of Autism includes a discussion of tax issues.

At The Hill, Peter Wilderotter writes about tax legislation:

The bill passed on Nov. 16 by the U.S. House of Representatives would eliminate a valuable deduction used by millions of people, including thousands with spinal cord injury, who face high medical bills.This allows taxpayers to deduct medical expenses for themselves and dependents that exceed more than 10 percent of their adjusted gross income.

...
About nine million people used the medical expense deduction in 2015 (the latest year information is available), claiming an estimated $87 billion in deductions.

This means that those who utilized the deduction — it’s only available to taxpayers who itemize their deductions — have extraordinarily high out-of-pocket health care costs. Additionally, many disabled Americans who file their own taxes may not realize the deduction even exists and, therefore, have not taken advantage of it.

For those who utilize it, however, the deduction is incredibly important to ensuring their financial well-being. The majority of those who claim the deduction have incomes of less than $75,000. They’re also the most vulnerable Americans: people already carrying catastrophic medical issues and the accompanying expenses, often with this deduction serving as the only barrier between them and poverty.

... 

Currently, small businesses can get a tax credit — the Disabled Access Credit — on any improvements they make to their facilities to make them more accessible. This credit has been vital for pushing back against (while providing a financial incentive to) businesses that claim it’s too expensive to comply with the Americans with Disabilities Act (ADA), despite having more than 26 years to become compliant.

The House bill eliminates this credit. Even worse, it comes on the heels of the House introducing legislation that would weaken the rights afforded by the ADA.

Spacing of Pregnancies as a Link

In The Politics of Autism, I discuss various ideas about what causes the condition.

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;

Not to mention fever during pregnancy.

Another is spacing of pregnancies. From EurekAlert:

Investigators have found a link between the amount of time between pregnancies and Autism Spectrum Disorder in children. The findings are published in Autism Research.
Autism Spectrum Disorder was increased in second and later-born children who were conceived less than 18 months or 60 or more months after the mother's previous birth. Other developmental disabilities were not associated with birth spacing.

"These findings support existing guidelines on pregnancy spacing and further highlight the association between autism and pregnancy health," said lead author Dr. Laura Schieve, of the Centers for Disease Control and Prevention. "Couples thinking about getting pregnant should discuss pregnancy planning with a trusted doctor or healthcare provider."

And back to maternal obesety, also from EurekAlert:

A recent Obesity Reviews analysis of published studies found that, compared with children of normal weight mothers, children whose mothers were overweight or obese prior to pregnancy had 17% and 51% increased risks for compromised neurodevelopmental outcomes, respectively.

Pre-pregnancy obesity was linked with a 62% increased risk of Attention Deficit Hyperactivity Disorder, a 36% increased risk of Autism Spectrum Disorder, a 58% increased risk of developmental delay, and a 42% increased risk of emotional/behavioral problems.

"Like avoiding smoking during pregnancy, this review of over 40 articles suggests that maintaining a healthy weight during pregnancy may also be important to a child's brain development," said senior author Dr. Bernard Fuemmeler, of the Virginia Commonwealth University.

Texas Scandals Continue

In The Politics of Autism, I discuss special education.  Some states do a reasonably good job, but Texas has not been one of them. A 2016 Houston Chronicle investigation revealed that tens of thousands of disabled students  were refused access to services because of a de-facto enrollment cap.

Matthew Choi at The Texas Tribune:

The Texas Education Agency fired the state's special education director Wednesday amid allegations that she covered up a sexual abuse case at her previous job at an Oregon school district, the Austin American-Statesman reported.

The firing comes two days after The Texas Tribune reported that Laurie Kash, who started at the Texas position in the summer, was facing a $1.85 million civil suit from two instructional assistants at Rainier School District in Oregon. The lawsuit alleges that a six-year-old special education student told the plaintiffs she was being sexually abused by a high school boy but that Kash and her husband, superintendent Michael Carter, blocked them from reporting it to the authorities. After they reported it anyway, Kash and Carter harassed the plaintiffs in retaliation, the suit alleges.

The TEA said in a statement to the Statesman that the allegations were not disclosed during the hiring process for Kash and that they "prevent her from carrying out her duties effectively." The agency could not be reached for further comment Wednesday.

Vaccine Update

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

FactCheck.org:

The Food and Drug Administration credits vaccines for the decline of many infectious diseases over the last century, and more than a decade of peer-reviewed studies show there is no link between their use and autism.

However, a story perpetuating the myth that vaccines cause autism has prompted several questions to FactCheck.org and has been getting popular on Facebook, where it was flagged by the social network’s users as potentially false. It is.

The headline on the story says: “NOW IT’S OFFICIAL: FDA Announced That Vaccines Are Causing Autism!”

But the FDA has made no such announcement, and the only evidence that the story gives to support its claim is the label from a vaccine called Tripedia, which was discontinued in 2011.

That evidence is pretty weak, since the label for Tripedia lists autism along with 10 other “adverse events” that were voluntarily reported by doctors or parents who had their children get the shot. Autism was not found to be among the effects identified in the studies of that drug before it went to market.

Julia Belluz at Vox:

While vaccine refusal rates have overall increased since 2011, they leveled off 2013 through 2016, researchers writing in the journal Open Forum Infectious Diseases found.
...
During the study period, there were important legislative advances in vaccine policy, which went into effect after the study ended. In July of 2016, Vermont banished its philosophical exemptions, and California also did away with all nonmedical exemptions. [But note that some parents are getting dubious medicale exemptions. -- JJP]

Legislation in other states generally seems to be heading in a more pro-vaccine direction. One JAMA paper looked at the 36 vaccine bills considered between 2009 and 2012: 31 wanted to expand them, making it easier to opt out of vaccines, while only five wanted to make vaccine exemptions more difficult to obtain.

None of the 31 anti-vaccine bills passed, while three of the five bills clamping down on vaccine deniers made it through. So while there was more activity from the anti-vaccine side, public health has been winning out in state legislatures.

But there are refusal hotspots.

In Texas for example, between 2003 and 2016, there’s been a 19-fold increase in vaccine refusals — and it hasn’t leveled of lately. “We are still seeing an aggressive increase in nonmedical exemptions [here in Texas],” said Peter Hotez, a pediatrician at Baylor College of Medicine, “with at least 52,000 last year, up from 45,000 the year before.”

Texas is one of those lax states that allows parents to get both religious and philosophical vaccine exemptions (unlike Mississippi, West Virginia, and California). Researchers have continually found these more permissive places have higher rates of vaccine refusals — a trend that appeared again in the Open Forum Infectious Diseases paper. In the study, the rate of exemptions was 2.41 times higher in states allowing both religious and philosophical exemptions compared to those that allowed religious exemptions only.

Taking the much longer view, since the early 1990s, vaccine exemptions have overall been trending upward. In one 2009 New England Journal of Medicine paper, researchers looked at the state-level rates of non-medical exemptions and found that, between 1991 and 2004, those rates increased from less than 0.98 percent to about 1.5 percent. According to the new study, we’re now hovering above the 2 percent exemption rate, which translates to thousands more unvaccinated children than just a decade ago.

Disability and Sexual Abuse

Recent stories have detailed sexual harassment and abuse in politics, business, and other areas of American life.  People with autism and other disabilities are especially at risk.

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

Click here for resources from RespectAbility 

Click here for resources from Autism Speaks.

From the HHS Office of Women's Health:

Research suggests that women with disabilities are more likely to experience domestic violence, emotional abuse, and sexual assault than women without disabilities.1 Women with disabilities may also feel more isolated and feel they are unable to report the abuse, or they may be dependent on the abuser for their care. Like many women who are abused, women with disabilities are usually abused by someone they know, such as a partner or family member.

In 2014, S. M. Brown-Lavoie, M. A. Viecili, and J. A. Weiss published an article in the Journal of Autism and Developmental Disorders titled "Sexual Knowledge and Victimization in Adults with Autism Spectrum Disorders."  The abstract of the study, which involved ASD people in Canada:

There is a significant gap in understanding the risk of sexual victimization in individuals with autism spectrum disorders (ASD) and the variables that contribute to risk. Age appropriate sexual interest, limited sexual knowledge and experiences, and social deficits, may place adults with ASD at increased risk. Ninety-five adults with ASD and 117 adults without ASD completed questionnaires regarding sexual knowledge sources, actual knowledge, perceived knowledge, and sexual victimization. Individuals with ASD obtained less of their sexual knowledge from social sources, more sexual knowledge from non-social sources, had less perceived and actual knowledge, and experienced more sexual victimization than controls. The increased risk of victimization by individuals with ASD was partially mediated by their actual knowledge. The link between knowledge and victimization has important clinical implications for interventions.

Buckeye Scandal Update: Wristbands?

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.  

Recently, a police officer in Buckeye, Arizona, abused an autistic teen who was peacefully stimming in a public park.  Now the department wants to create a registry for people with autism and other disabilities.  They could wear wristbands so that police could more easily identify them. Dave Biscobing at KNXV-TV:

“I think it’s disgusting that you have to label someone with a disability with a special mark so they don’t have to live in fear from being hurt by police,” said Danielle Leibel, who told ABC15 her son Connor was traumatized during the incident.

“If my son were on a registry, how would that have changed this situation at all?” she asked. “How would that have kept him safe?"

Buckeye will give people on the registry a color-coded wristband according to their condition.

ABC15 obtained a copy of the registry application and the color codes.

“It sounds like an idea with good intentions but I’m curious to see how successful it is,” said Dr. Aaron Blocher-Rubin, CEO of Arizona Autism United.

According to information provided by Buckeye, the registry’s purpose is “to compile and maintain a list of individuals who have ‘Special Needs’ due to mental or neurological disabilities and who may reside or frequently visit the City of Buckeye.”

...

“It publicly labels someone which certainly has some drawbacks,” he said.

Most importantly, Blocher-Rubin hopes the registry and wristbands don’t replace training and awareness.

“You would hate to see that it becomes an expectation,” he said. “Hopefully, this is just some extra thing to provide some help and not over time becomes an expectation to where police say, ‘You didn’t sign up, so how did you expect us to know.’”

...
 “People with disabilities shouldn’t be required to broadcast their diagnosis to the world just because police officers have insufficient training,” said ACLU Arizona policy director Will Gaona. “I think a better solution would be to have special wristbands for officers who engage in excessive use of force so the public knows who they are dealing with.”

Autism Society v. GOP Tax Bills

The Politics of Autism includes a discussion of tax issues.

The Autism Society opposes the GOP tax bills:

Background

On November 16, the House of Representatives passed its version of a tax bill. Now the Senate is finalizing its own version. Both bills are extremely damaging because they:
Pave the way for cutting Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to pay for the tax cuts later.
Increase the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.

But the Senate bill is even worse. It also repeals the “individual mandate” for people to have health care coverage. If this happens, nearly 14 million people will lose health coverage and it will increase premiums for people buying insurance on the health insurance exchange by 10% per year. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more.

The Senate is scheduled to vote on its Tax Cuts and Jobs Act the week after Thanksgiving.

We must stop this very harmful and unpopular legislation NOW. TAKE ACTION

• Call your Senators. Call the Capitol Switchboard number 202-224-3121 and ask for your Senators.
• Attend a Town Hall Meeting.
• Participate in a Tax Plan Rally Event.

WHAT TO SAY:

• I am a member of Autism Society of America.
• Please vote NO on the Tax Cuts and Jobs Act.
• We cannot afford these tax cuts that go mainly to the wealthiest Americans and large corporations.
• Tax reform should not be rushed. People should have time to understand the bill and how they will be affected.

Hollywood, Autism, and Self-Funded Insurance

In The Politics of Autism, I write:

Sixty-one percent of Americans with employer-sponsored health insurance are in a self-funded plan, in which the employer takes direct financial responsibility for enrollees’ medical claims. Employers that self-fund typically contract with an insurance company to run the plan. Workers then get cards that bear the name of the insurance company and often look just like those from a traditional plan, so many do not even know that they are in a self-funded plan. Most of the time, the distinction makes little difference -- unless the employees are seeking coverage for a family member with autism. The catch is that the state mandates do not apply to self-funded plans. A federal law (the Employee Retirement Income Security Act of 1974, or ERISA) exempts self-funded plans from most state insurance laws, including mandated benefits. When South Carolina passed its mandate, the Unumb family was in a self-funded plan, so Ryan could not benefit from Ryan’s Law. As lawyers, the Unumbs knew about this exception all along, but for many autism families in states with insurance mandates, it comes as an unpleasant surprise.

At Variety, Jessica Ritz writes that her family relies on a Writers Guild of America (WGA) health plan.

But for many families in the entertainment industry affected by autism, there’s a stinging irony. Our WGA health care plan doesn’t cover most of our son’s therapies. Those who create the characters and stories that help spread autism awareness are themselves often denied essential funds to help treat this very condition, leaving the burden of extensive intervention costs largely on our shoulders.
...

California Senate Bill 946, California’s Autism Insurance Mandate initially passed in the state legislature in 2011 and implemented in 2012, helped nudge the needle forward to add autism services to behavioral health insurance coverage in California, including Applied Behavioral Analysis (ABA) and other autism therapies. And yet the loopholes are many. The Writers’ Guild-Industry Health Fund is a “self-funded” entity, meaning it’s administered by a third party and therefore has discretion over what’s included in members’ Anthem Blue Cross plan.

We received a letter explaining the Fund “recognizes” SB 946, but the Health Fund Plan excludes ABA and other “Educational Therapy” treatments. File this discretionary decision under perfectly legal — and a deeply unfair policy that needs to be challenged. (Yet another item to add to the parents of special needs kids’ To Do lists, along with consulting with therapists, attorneys, and advocates.) When your own insurance plan falls short, the buck gets passed to overburdened public agencies, such as California Regional Center.

Kevin and Avonte's Law Clears Senate Judiciary Committee

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

On Thursday, the Senate Judiciary Committee reported S. 2070: Kevin and Avonte's Law of 2017.  Senator Charles Grassley (R-IA), chair of the committee and sponsor of the bill, said:

Today, we have Kevin and Avonte’s Law of 2017, S. 2070, on the agenda. I want to thank Senators Klobuchar, Tillis, Schumer, Burr, Durbin, and Coons for their cosponsorship of this measure, which last July passed the full Senate by voice vote.

The House passed a related companion bill in December, but we ran out of time before the 114th Congress adjourned to resolve differences between the two chambers’ versions. This year, however, Congressman Smith and I introduced the same bill text in both chambers on the same day.

Our bill would update and extend a Justice Department program known as the Missing Alzheimer’s Disease Patient Alert Program. That program reportedly had a high success rate in locating missing individuals who enrolled in it.

We’ve retitled the program and changed it to support not just people with dementia but also children with developmental disabilities. It allows Justice Department grants to be used for education programs to help prevent wandering by these individuals and for technology to reunite caregivers with missing family members.

For example, because police often are the first people to respond when a child goes missing, the bill will make resources available to equip first responders with the training necessary to better prevent and respond to these cases. These activities will help save lives and conserve police resources.

The measure’s entitled “Kevin and Avonte’s Law" in honor of two young, autistic boys who wandered away from their caretakers and drowned. One of the two, Kevin Curtis Wills, jumped into Raccoon River near his hometown in Jefferson, Iowa, at the age of nine. Research suggests that up to half of autistic children wander, and those who do are strongly attracted to bodies of water, often with similarly tragic results.

We’ve received endorsement letters from the Alzheimer’s Association, the National Center for Missing and Exploited Children, Autism Speaks, the Autism Safety Coalition, the Arc, and the National Down Syndrome Society, among many others. I seek unanimous consent to include those in the Record.

The Autism Treatment Market

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

Autism treatment is a business.  There are many good providers, with dedicated therapists who can help autistic people achieve remarkable outcomes. But there are a lot of substandard providers and outright scamsters, too.  It is extremely difficult for parents to find reliable, standardized information about providers and the quality of the services they offer.

A release from Marketdata:

Marketdata LLC, a leading independent market research publisher since 1979, has released a new study, a 50-page report entitled: The U.S. Autism Treatment Market . The study traces the market from 2009-2022 Forecast, examining programs and medications used to treat children with autism. This is a little-researched, but growth niche market.

According to Research Director, John LaRosa: “Applied behavior analysis (ABA) has become widely accepted among health care professionals and is used in many schools and autism treatment clinics. Occupational and speech therapy are also used.”

Major Findings:

Market Value… The U.S. autism treatment market was estimated to be valued at $1.85 billion as of 2016, growing to $1.87 billion in the current year. Marketdata forecasts 3.9% average yearly growth, to $2.23 billion by 2022. This could be conservative, as insurance coverage is improving.

ABA (applied behavioral analysis) programs are estimated to generate $1.07 billion in revenues this year, and prescription drugs for autism symptoms account for $800 million.

Patient Demographics…. Based on new government data that finds that 1 in 45 children in the United States, aged 3-17, have autism, Marketdata analysts estimate that there are 1.4 million children with autism. Another 700,000 adults have autism, having “aged out” of childrens’ programs. 81% of autistic children are male.

The total annual costs for children with ASD (autism spectrum disorder) in the United States were estimated to be between $11.5 billion and $60.9 billion -- a significant economic burden.

There are basically three types of ABA program providers: brick & mortar centers, community providers, and In-home therapists.

The “average” ABA center grosses about $821,000. Many are non-profit organizations. Many now have waiting lists and there is a shortage of qualified supervisors.

Insurance coverage is a problem, but the share of children with access to insurance coverage is expected to increase from the 36% level today. In addition, the number of self-funded private employers covering autism treatment continues to grow.
Venture capital firms are starting to take notice of investment opportunities in this market.

Data suggest that approximately 58 percent of patients with a diagnosis of childhood autism receive some type of pharmaceutical treatment. However, this segment of the market has been shrinking in value as concerns continue over side effects of drugs such as Risperdal. These drugs also face competition from cheaper generics, as patents have expired.

Nine large multi-site ABA program providers operate an estimated 296 brick and mortar centers and employ thousands of therapists. Together, they account for about $390 million in revenues—a 38% market share of ABA programs.

"Many autism treatment organizations, and some of the largest competitors, are located in California. This is due to the fact that funding for treatment programs has been in place there since the 1990s, prior to the insurance mandates that were later put into place.”, according to John LaRosa.

As for the last point, note that Lovaas worked at UCLA and many of his students work in the region.

Many self-advocate object to "economic cost" analysis, arguing that it treats autistic people as burdens rather than contributors to society.

Finally, note the emphasis on children.  Autistic youths grow into autistic adults, and they continue to need services.  We know a good deal less about the fate of autistic adults.

Nominee to Head Special Education Office

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From the White House:

From Johnny Collett of Kentucky, to be the Assistant Secretary of Education for Special Education and Rehabilitative Services. Mr. Collett is the Director of Special Education Outcomes at the Council of Chief State School Officers. In this role, he supports states in their work to raise expectations and improve outcomes for children and youth with disabilities. He previously served as Director of the Division of Learning Services and State Director of Special Education at the Kentucky Department of Education. In this role, he provided oversight to a division that included special education, as well as other program areas such as English Learners, gifted and talented, response to intervention, the Kentucky School for the Blind, and the Kentucky School for the Deaf. He also served on the board of directors of the National Association of State Directors of Special Education, serving a partial term as secretary-treasurer of the board. Mr. Collett also served in various other roles, including exceptional children consultant, assistant division director, and acting division director. Prior to working at the Kentucky Department of Education, he was a high school special education teacher. Mr. Collett is a graduate of the University of Kentucky, and Georgetown College (KY).

From an April interview with Collett: 

The same reason that academic success for any student is important to me. While it is true that much progress has been made over the last 40 years since the passage of the Individuals with Disabilities Education Act (IDEA), it is also true that there is still much work to do to ensure that all children, including students with disabilities, are prepared for success. For example, states have learned that a focus on compliance under IDEA, while necessary, is not sufficient by itself to improve achievement and outcomes for SWD. States are not content to maintain environments where the achievement of compliance alone is viewed as success. As a result, the focus has expanded beyond compliance to include intentional focus around results and to improving achievement and outcomes for SWD, as well as associated staff development and school improvement toward that end.

 At his confirmation hearing, senators should ask him about reports that DeVos wants to change rules concerning minority enrollment in special education.

Senate Tax Bill Would Repeal the ACA Individual Mandate

The Politics of Autism includes a discussion of tax issues.

From the Autistic Self Advocacy Network:

ASAN remains strongly opposed to the elimination of the individual mandate to purchase health insurance under the Affordable Care Act (ACA), and condemns the inclusion of repeal within the latest versions of the tax bills.

The individual mandate helps make insurance more affordable, especially for people with disabilities. The bipartisan Congressional Budget Office has shown that 13 million people could lose access to affordable coverage if the mandate is repealed, with premiums rising an average of 10%. The American people have strongly rejected such proposals three times in this year alone. Taken in conjunction with the Budget resolution which cut $5 trillion dollars over the next decade from Medicaid, Social Security, and other essential services that allow people with disabilities to live good lives in our communities, the tax bill and the repeal of the individual mandate amount to a full-scale attack on people with disabilities.

It is reprehensible and immoral to take health care away from 13 million people in order to let corporations and the wealthiest Americans avoid paying their fair share of taxes. The lives and liberty of people with disabilities are worth more than this. ASAN urges Congress to heed the clear voice of the disability community–and many others–and abandon this umpteenth attempt to force a destructive and partisan agenda.

Trump Names Drug Company Guy to Head HHS

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Trump promoted that idea, but stiffed antivax activists in his appointments to FDA and CDC.

Now he is nominating a drug company guy to head HHS.

From the White House:

Alex Michael Azar II of Indiana, to be the Secretary of Health & Human Services. Mr. Azar is currently the chairman of Seraphim Strategies, LLC. Mr. Azar has led a notable career by serving in several senior roles in both the public and private sectors. As President of Lilly USA, LLC, the largest affiliate of global biopharmaceutical leader Eli Lilly and Company, he directly led the U.S. Biomedicines business unit, the affiliate’s largest division, encompassing the areas of neuroscience, cardiovascular health, men’s health, musculoskeletal, autoimmune disease, Alzheimer’s disease, and pain, as well as the sales, marketing, and payer operations of the company’s U.S. commercial business. Prior to his time at Lilly USA, Mr. Azar was the Deputy Secretary of the U.S. Department of Health and Human Services immediately after serving as its General Counsel, where the Senate confirmed him for both Presidential appointments by voice vote. He received his bachelor’s degree from Dartmouth College and his juris doctorate from Yale University.

Eli Lilly is not only a major manufacturer of vaccines, it is the company that developed thimerosal.

Antivax Rep. Dan Burton represented the Indiana district where Lilly is located. He attacked the company, and its executives (though not Azar personally) contributed to his primary opponents in 2010.

The antivax people are probably unhappy.

Trump betrays everybody.

In this case, good!

Hyping Research

In The Politics of Autism, I discuss various ideas about what causes the condition.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  

 A release from the University of Nebraska-Lincoln:

A breakthrough in finding the mechanism and a possible therapeutic fix for autism and intellectual disability has been made by a University of Nebraska Medical Center researcher and his team at the Munroe-Meyer Institute (MMI).

Woo-Yang Kim, Ph.D., associate professor, developmental neuroscience, led a team of researchers from UNMC and Creighton University into a deeper exploration of a genetic mutation that reduces the function of certain neurons in the brain.

Dr. Kim's findings were published in this week's online issue of Nature Neuroscience.
"This is an exciting development because we have identified the pathological mechanism for a certain type of autism and intellectual disability," Dr. Kim said.

Recent studies have shown that the disorder occurs when a first-time mutation causes only one copy of the human AT-rich interactive domain 1B (ARID1B) gene to remain functional, but it was unknown how it led to abnormal cognitive and social behaviors.

Autism spectrum disorder (ASD) impairs the ability of individuals to communicate and interact with others. About 75 percent of individuals with ASD also have intellectual disability, which is characterized by significant limitations in cognitive functions and adaptive behaviors.

There are no drugs or genetic treatments to prevent ASD or intellectual disability; the only treatment options focus on behavioral management and educational and physical therapies.

The team created and analyzed a genetically modified mouse and found that a mutated Arid1b gene impairs GABA neurons, the 'downer' neurotransmitter, leading to an imbalance of communication in the brain.

... 

"We showed that cognitive and social deficits induced by an Arid1b mutation in mice are reversed by pharmacological treatment with a GABA receptor modulating drug. And, now we have a designer mouse that can be used for future studies."

The study may well be very good neuroscience, but any connection between a mouse study and intervetnions that will help autistic people will encompass many years and countless other studies. Autism affects behaviors (e.g., speech) that mice cannot perform in the first place.  It is pure hype to use a headline such as "Breakthrough research suggests potential treatment for autism, intellectual disability."

House Tax Bill Would Hurt People with Autism and Other Disabilities

The Politics of Autism includes a discussion of tax issues.

At The Daily Beast, Elizabeth Picciuto explains why the House tax bill would hurt people with disabilities.

The provision that will have the most catastrophic effect on disabled people is the removal of the deduction for out-of-pocket medical expenses. Currently, if your out-of-pocket medical expenses exceed 10 percent of your adjusted gross income, you can deduct that from your tax bill. In the Jobs and Tax Cuts Bill, that provision is excised completely.

Depending on individual circumstances, people who pay out-of-pocket for personal care assistants and durable medical equipment would be among those experiencing the most calamitous repercussions. Someone who needs a new power wheelchair to get to work and recreational events may have to fork over tens of thousands of dollars. A caregiver who can only maintain a full-time career if she hires a personal care assistant to provide care for an aging parent may be forced to quit her job. A disabled person who can live independently in the community so long as he has a personal care assistant may have to live in a nursing home instead.

“[Disabled people are] a group at a disadvantage that’s been targeted to raise revenue,” says Thomas Cooke, a professor specializing in tax law at Georgetown University. “The broad sweep of this bill is to cut corporate taxes significantly. Somebody’s got to pay for that reduction. And I’m afraid it’s being paid on the backs of individual taxpayers, including taxpayers with disabilities and medical expenses.”
...
Another provision that specifically affects disabled people is the elimination of a tax credit granted to businesses to comply with the Americans with Disabilities Act, or ADA. Businesses that, for example, wish to build a ramp, hire a sign language interpreter, or make their website more accessible can no longer claim this exemption. “It’s disastrous,” Cooke said.

Concurrently, there is a bill pending in the House, H.R. 620, designed to make it harder for disabled people to sue businesses that do not comply with the ADA. Suing is the primary current enforcement mechanism for failures to comply with the ADA.

In tandem, the tax bill and H.R. 620 would make it more expensive to comply with ADA and less risky to violate it.

Insurance Mandates Mean Autistic Kids Get More Services

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

Brendan Saloner and Colleen L Barry have an article at Autism titled "Changes in Spending and Service Use after a State Autism Insurance Mandate." The abstract:

Almost all states have insurance coverage mandates for childhood autism spectrum disorder treatment, yet little is known about how mandates affect spending and service use. We evaluated a 2011 Kansas law mandating comprehensive coverage of autism spectrum disorder treatments in the State Employee Health Plan. Data were extracted from the Kansas All-Payer Claims Database from 2009 to 2013 for enrollees of State Employee Health Plan and private health plans. The sample included children aged 0–18 years with >2 claims with an autism spectrum disorder diagnosis insured through State Employee Health Plan or a comparison group enrolled through private health plans. We estimated differences-in-differences regression models to compare trends among State Employee Health Plan to privately insured children. Average annual total spending on autism spectrum disorder services increased by US$912 (95% confidence interval: US$331–US$1492) and average annual out-of-pocket spending on autism spectrum disorder services increased by US$138 (95% confidence interval: US$53–US$223) among diagnosed children in the State Employee Health Plan relative to the comparison group following the mandate, representing 92% and 75% increases over baseline total and out-of-pocket autism spectrum disorder spending, respectively. Average annual quantity of outpatient autism spectrum disorder services increased by 15.0 services (95% confidence interval: 8.4–21.6) among children in the State Employee Health Plan, more than doubling the baseline average. Implementation of a comprehensive autism spectrum disorder mandate in the Kansas State Employee Health Plan was associated with substantial increases in service use and spending for autism spectrum disorder treatment among autism spectrum disorder–diagnosed children.

From the study:

It is unclear what factors drive increased utilization. One likely possibility is that increasing the spending cap led families with children who were previously constrained
to use more services. Another possibility is that some of the increase in spending and service use with an ASD diagnosis code may be related to reclassification of services
that were already being provided to children prior to the mandate. For example, a child previously receiving counseling with an intellectual disability diagnosis may be classified with an ASD diagnosis after the mandate in order to take advantage of better coverage. We found large, but not statistically significant, reductions in non-ASD spending and prescription drug spending after the mandate. Finally, better access to services for ASD-diagnosed youth may reduce spending in other areas due to improved medical management (e.g. reduced visits to the emergency department). Identifying the contribution of these factors is important for further research.

...
The Kansas SEHP experience demonstrates that coverage mandates can be effective in increasing receipt of services among youth with diagnosed ASD. With a growing number
of states implementing these mandates, experiences may differ depending upon factors such as the scope and enforcement of the mandate, the response of insurance companies to new requirements, and the level of awareness among physicians, patients, and parents of children with ASD. As was found in Kansas, new mandates may create opportunities for children to take advantage of a broader array of services. Whether these policies lead to better quality of care and improved outcomes among these children will be an important benchmark for future evaluation.