Push for Full Funding of IDEA

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

Senator Charles Schumer (D-NY) has written the chair and ranking Democrat of the Senate Appropriations Committee:

Dear Chairman Blunt and Ranking Member Murray,

I write today on behalf of children with autism spectrum disorder and other developmental disabilities to urge you to increase funding for Part B of the Individuals with Disabilities Education Act (IDEA). This program serves one of our country’s most vulnerable populations, yet has never received full funding. Children living with autism and other developmental disabilities have the right to receive the high-quality, comprehensive range of services provided by IDEA.

As you know, the majority of educational services provided to children with developmental disabilities fall under IDEA Part B. This program authorizes grants to states based on the state’s number of children between ages 3-21 and the number of children within that age range living in poverty. When passed into law, Congress authorized IDEA funding equal to 40 percent of the national average per pupil expenditure (APPE) multiplied by the number of children with disabilities served. Unfortunately, IDEA has never received the full appropriation to help ensure that children and families receiving services and supports thrive.

In Fiscal Year 2016, federal funding for IDEA Part B only covered 16 percent of APPE. This means that appropriations fell short of the full funding by approximately $17.85 billion dollars. As the full funding estimate continues to rise, it is critical that we work to close the gap between this and the annual appropriation.

It is important that educational services and resources are available for families and children with autism spectrum disorder and other developmental disabilities.

Unfortunately the ongoing lack of funding for IDEA does not reflect the current need for services. A recent report issued by the Office of Autism Research Coordination and the Interagency Autism Coordination Committee found that only about seven percent of funding for autism research went to the development of services and less than one percent of research funding went to issues that follow people with autism throughout their lifetime.

In order for our nation’s children to thrive, we must invest in services that set them up for success. For this reason, I urge you to decrease the funding gap between the estimated need and the actual funding by increasing appropriations for IDEA Part B. I know you have been working on these issues for some time and I appreciate the opportunity to work with you in supporting this critical funding situation.

Sincerely,
Charles E. Schumer
United States Senator

In California, Autism Up, Intellectual Disability Down

In The Politics of Autism, I write:

While many people with autism received the tag of “mentally ill,” even more fell into the category of “mentally retarded.” Again, the reasons for the label are easy to grasp. Some people on the spectrum do have low IQs, though not as many as researchers once thought. More important, poor attention to task may cause intelligent people with autism to stumble on standardized tests. “Mental retardation” was a convenient catchall category for people with low scores and unusual behavior.

At Left Brain/Right Brain, Matt Carey looks at data from the California Department of Developmental Services.  He finds support for the idea that diagnostic substitution accounts for much of the apparent rise in autism prevalence:

You see I also graphed intellectual disability. I got autism counts, intellectual disability counts and “unduplicated” (total, each disabled person counted once) by birth year. I also got census data by birth year. And I graphed them. And anyone claiming CDDS data show an autism epidemic needs to do the same and to explain this graph, complete with the sharp peak for birth year 1993. (click to enlarge):

Intellectual disability has dropped. Off about 40% of the peak value.

If you think your idea for the rise in autism is correct, let’s take the failed vaccine idea as an example, you need to also explain how that resulted in far fewer people with intellectual disability. Plain and simple. And none of these claimed causes of an “epidemic” can explain the drop in ID.

Why bother challenging the people claiming an autism epidemic? Because it denies the existence of undiagnosed autistic adults. We have very little effort to identify those who were missed in past generations. And the likelihood is that these people–our people–are not being supported appropriately because of their misdiagnoses. And not only are we abandoning the misdiagnosed, we are failing to learn. What worked for past generations, the adults of today? What failed? What are the appropriate supports for the various needs of autistic adults? We don’t know today. And are unlikely to know by the time my kid is an adult, especially if we aren’t even looking at autistic adult needs today.

And then there’s the whole autism causation question. People spending their time trying to correlate CDDS data–data clearly confounded by numerous social influences–are unlikely to ever find a real answer.

But, for those who want to keep trying, include all the data. Give an explanation for this and you may be on to something.

Training for Special Education

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

On Thursday, the U.S. Department of Education today announced more than $13.4 million in grants to higher education institutions to fund quality personnel preparation programs to help improve services and results for students with disabilities.  From the release:

“We are committed to promoting equity and excellence at every level of the education system,” said Sue Swenson, acting assistant secretary for the Office of Special Education and Rehabilitative Services. “These grants will give special education teachers and leaders the skills to help America’s students with disabilities achieve their academic potential.”

Of the $13.4 million, more than $4.1 million is being awarded under the Personnel Development to Improve Services and Results for Children with Disabilities – Leadership Personnel program. The funds will go to higher education institutions to prepare doctoral students for faculty and administrator positions in special education, early intervention and related services.

The remaining $9.3 million in support is being provided under the Combined Priority for Personnel Development to help address state-identified needs for highly qualified personnel in special education, early intervention and regular education programs that serve children with disabilities. The funds will help train teachers and direct service providers in such areas as early childhood, low-incidence disabilities, related services and transition services.

The Office of Special Education Programs is a primary source of federal funding for training in special education, early intervention and related services.

Yet Another Purported Risk Factor: Circumcision

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 peer-reviewed 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. 

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. "  One recent example is the notion that too much folic acid may play a part.

Another involves circumcision.  Sarah Kovac reports at Time:

Dr. Morten Frisch is a Danish epidemiologist who led a study examining the link between circumcision and ASD. The study, published in the Journal of the Royal Society of Medicine, found that boys who undergo circumcision are more likely to be diagnosed with autism by age 9. “Considering the widespread practice of non-therapeutic circumcision in infancy and childhood around the world,” the study states, “confirmatory studies should be given priority.”

...
But Frisch’s study is not without its critics, one of the most vocal being Professor Emeritus Brian Morris of the University of Sydney. “The problem with Frisch’s fundamental premise is that circumcision causes pain in infants and boys… Sometimes observers believe that crying during a circumcision is because of pain when in fact it is more likely because of the baby having to be restrained.” Morris also points out that, in many circumcisions, the baby doesn’t even cry during the procedure, and may even fall asleep.

His argument is supported by statistics out of Australia, where circumcision rates have been dropping since the 1960s, but ASD diagnoses have been rising.

Pathways to Early Diagnosis and Intervention

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

At IMFAR 2016, Maria Martinez had a paper titled: "Pathways to Early Autism Diagnosis and Intervention." The abstract:

Background:

Families of children with an ASD have more difficulty accessing and using services compared to families with children with other mental health care needs (Vohra, Madhavan, Sambamoorthi & St. Peter, 2014). The Autism CARES Act of 2014 introduced legislation to reduce barriers to screening, diagnosis and treatment however little is known about pathways that lead to earlier diagnosis and intervention. The Anderson model of health care utilization (Aday & Anderson, 1975) provides a framework to organize and examine factors associated with earlier access to autism services.

Objectives:

The purpose of this study is to identify pathways associated with early screening, assessment and intervention that can be utilized to develop a system of service that provides early intervention for autism spectrum disorders (ASD) and other developmental disabilities in order to facilitate children’s ability to reach their maximum potential. The target audience includes researchers, stakeholders and policy makers.

Methods:

Data from the 2014-2015 North Carolina Needs of Young Children with Autism Survey are presented that represent over 450 families with a child diagnosed with an ASD. Descriptive statistics and logit modeling analyzed de-identified demographic, diagnostic and service use information using the Anderson health care utilization framework. Pathways to early intervention as well as models predicting early parent recognition of concerns, who first recognized concerns, time to diagnosis, and early intervention are presented.

Results:

Early parent recognition is associated with parents sharing concerns with more providers prior to a child’s initial ASD diagnosis (p < .005), ASD presentations with lower levels of functioning (p < .005), parents (vs. providers) first recognizing a concern (p < .005), and type of providers conducting initial autism assessment (p < .05). Who first recognized developmental concerns was associated with parent completion of an autism screener at their doctor’s office (p < .01) and minority child race/ethnicity (p <.05). Early diagnosis was associated with ASD presentations with lower functioning (p < .001), type of provider (p < .05) conducting ASD assessment, and autism screening (p < .05). Early intervention was associated with ASD presentations with lower functioning (p < .05) and type of providers conducting initial autism assessment (p < .05).

Conclusions:

Parents who recognized concerns early were more likely to enter a pathway to earlier child diagnosis and intervention, particularly in cases of prompt initial diagnosis. This appears to be associated with type of provider conducting initial autism assessment and severity of child functioning, reflecting quicker pathway entry for families who are swiftly connected with specialists as well as autism presentations with greater functional impairment that may be easier to identify. When providers initially recognized developmental concerns, families were more likely to enter a pathway to quicker diagnosis and earlier intervention.

It is important for policy makers to support and increase autism awareness among parents and providers, routine autism screening and follow-up, strategies to improve provider recognition for minority and higher functioning children, and availability of specialists trained to conduct early diagnostic assessments

Autism and Assets

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

Yuki Noguchi reports at NPR:

"Once you develop into an adult, those resources plummet," says Leslie Long, vice president of adult services for the advocacy group Autism Speaks. 

An estimated 50,000 people on the spectrum enter adulthood every year. Face-to-face job interviews can be a challenge for many, Long says, and some engage in repetitive behaviors, which can seem odd to the uninitiated. 

But those idiosyncracies sometimes mask hidden talents, she says — like intense focus, or a facility with numbers and patterns. 

"I mean, look at what happened with the housing bubble and the financial market," she points out. "It was a man on the spectrum who saw which mortgages were going to fall. And I don't think that's something an average person would have been able to do." 

That particular case — of Dr. Michael Burry, the physician and hedge fund manager featured in the book and movie The Big Short — is in many ways exceptional, Long admits. (Burry has a son with Asperger's syndrome, and has said he believes he fits thediagnosis, as well.) 

Still, with baby boomers starting to retire, and with talent in increasingly short supply, companies as varied as Microsoft, Walgreens, Capital One, AMC Theaters, and Proctor & Gamble are all starting to actively recruit people who have autism spectrum disorder. They aren't yet putting a lot more people to work, but their recruiting and training programs are becoming models for other firms.

Autism: What Are We Spending Money On?

Yesterday, I cited a passage in The Politics of Autism: "A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit?"  Indeed, uncertainty is a major theme of the book, which concludes with a call for research in what works.

Aubyn C Stahmer, Jessica Suhrheinrich, and David S Mandell have an editorial in Autism: "The Importance of Characterizing Intervention for Individuals with Autism."

The estimated annual cost of caring for individuals with autism is US$268 billion (Leigh and Du, 2015). What is this buying? Beyond a general knowledge of setting and type of service provided (e.g. educational, mental health, speech therapy, and occupational therapy), we know very little about the type and quality of interventions being delivered. For several reasons, it is imperative that we be able to accurately and efficiently characterize the treatment that children with autism receive in their communities.

... 

• One reason for this urgency links treatment to our basic understanding of mechanism and subtype in autism.
• The second reason for characterizing intervention is the need to identify active mechanisms, with the goal of refining treatments (e.g. Kasari and Lawton, 2010;Schreibman et al., 2015)
• The third reason to characterize interventions is that we can measure the quality of care individuals with autism receive.The service delivery infrastructure for individuals with autism has not kept pace with the dramatically increasing number of children diagnosed. Service providers rush to hang out shingles saying that they treat autism, but there are few licensure and credentialing practices in place. 

Building the Gauges

In The Politics of Autism, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Autism Speaks reports on comments by Dr. Paul Shattuck at IMFAR:

“There have been many calls to ‘move the needle’ on adult outcomes,” he said. “But we still need to build the gauges to see if adult outcomes are truly improving over time.”

By what few measures are available, he said, it appears that, overall, young adults on the autism spectrum are doing poorly despite historic expenditures into research and interventions.

By way of example, Dr. Shattuck noted the “National Autism Indicators Report” that his team released earlier this month. (Autism Speaks Vice President of Adult Services Leslie Long served on the report’s advisory panel.)

The report found that nearly 18,000 people with autism used state-funded vocational rehabilitation programs in 2014, more than double the number five years earlier. But only 60 percent of these people left the program with a job. And 80 percent of these worked just part-time at a median weekly rate of $160, putting them well below the poverty level.

In part, he proposed, we’re doing so poorly in supporting the transition to adulthood because such a thin sliver of autism research funding is going toward lifespan issues such as developing effective supports to improve success in employment and community integration.

The recent “Portfolio Analysis Report,” by the Interagency Autism Coordinating Committee (IACC) put that sliver at just 1 percent of total autism research expenditures in 2012, Dr. Shattuck noted. (See graphic below.)

“I don’t have all the answers,” he said. “But the fact that there are cries to move the needle on adult outcomes in the context of tiny outlays in support of adult research reminds me of a quote attributed to Henry Ford: ‘If you always do what you’ve always done, you’ll always get what you’ve always got.’ The only way we can move the needle on outcomes is to first move the needle on funding for a research agenda that prioritizes services and life course questions.”

Adding to the urgency, Dr. Shattuck said, the Workforce Innovation and Opportunity Act, passed last year, requires all states to dedicate at least 15 percent of their vocational rehabilitation budgets to programs for transition-age youth (teens and young adults).
“So here we are embarking on a huge policy experiment, with state governments spending huge amounts of money, but with little guidance and no plan for measuring whether any of this effort is having the desired impact of improving to lives,” he warned.

Underserved Populations

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

Roy Grinker and colleagues have a paper titled "Mobilizing Community Systems to Tackle Challenges of Early Detection of ASD in Underserved Populations."  The abstract:

Background: There is a pressing need to improve the capacity of communities to detect ASD early to change developmental trajectories and improve outcomes. Although delays in social communication usually appear by 18-24 months, most children are not diagnosed until 4-5 years of age. Underserved families are identified even later and are underrepresented in intervention research. This new collaborative of 4 universities in partnership with the National Black Church Initiative (NBCI) has infused community-based participatory research and implementation science within a services research study to build consensus with stakeholders in the planning stages to lay the foundation for sustained utilization. The long-term project aim is to study effectiveness of mobilizing community systems using a web-based professional development platform with links to family resources and tools to increase family engagement and expedite receipt of screening, diagnosis, and early intervention services.

Objectives: To describe qualitative research findings from focus groups with families and providers designed 1) to identify challenges and barriers to early detection and access to early intervention (EI) for children under 24 months, and 2) to develop strategies to promote EI in underserved populations.

Methods: Focus groups with community stakeholders, including parents (n = 105) and professionals (n = 45), were conducted in Southwest Florida, Atlanta, Philadelphia, and NYC. Separate groups were held for primary care physicians, parents/grandparents from NBCI, and parents of children at-risk for developmental delay. Topics included: 1) barriers to early screening in primary care settings; 2) strategies to engage families and professionals and improve participation in the screening/referral process; and 3) information sharing about EI with families at the time of screening, diagnosis, and referral. Focus groups were audio-recorded and transcribed.

Driven by an iterative, grounded theory approach, researchers analyzed transcripts with an inductive, open-coding technique to identify emergent thematic dimensions, recurrent patterns and analytical categories. Focused coding of the remaining transcripts, using Dedoose software, identified major themes and frequency counts linked to core theoretical concepts. The use of multiple sites and the mapping of diverse stakeholder viewpoints within the same community (physicians, grandparents, and parents) onto themes allowed for increased dimensions of variation in this purposive sample, and for saturation of themes. Research team members completed five inter-rater reliability tests in Dedoose, resulting in very good agreement (average pooled Cohen’s kappa=93.6). Further measures of inter-rater reliability included consensus coding, data review, and discussion and resolution of discrepancies.

Results: Sixteen major themes emerged from 1,709 excerpts, and illustrative quotes were drawn from diverse topics surrounding culture, early developmental milestones and red flags, family-physician trust, previous experience with individuals with autism/other disabilities, stigma, materials, resources, support, and practical and psychological/motivational barriers to accessing screening, assessment and intervention (Figure 1).

Conclusions: Topics for further exploration include the role of family power structures and processes impacting engagement in community screening, diagnosis and early intervention services; trusted materials and resources used in information gathering about ASD and developmental milestones; where families turn when traditional support systems fail; and family feelings, perspectives, and resistance to classifying a child who is continuously growing.

Causes, Correlates, and Folic Acid

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 peer-reviewed 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. 

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. "

James Hamblin writes at The Atlantic about a Johns Hopkins press release:

The written press release was titled “Too Much Folate in Pregnant Women Increases Risk for Autism, Study Suggests.”

The subsequent headlines were similar: “Autism Linked to Overdose of Folate and Vitamin B12 During Pregnancy” (The Telegraph), “Study: Too Much Folate, B12 In Pregnant Women Can Multiply Autism Risk By 17.6” (CBS), “A Study Asks: Too Much Folic Acid a Cause of Autism?” (Fox News). I could go on.

...

At this point, though, the evidence is extremely premature. The findings have not been peer-reviewed or published in a journal; the press release referred only to a brief scientific abstract that is being presented at a conference this week.

It remains to be seen if the findings hold up to the scrutiny of peer review and, so, warrant publication in a medical journal. Even if they do, after that, the correlation would need to be seen again, and again, in multiple studies, before it could reliably be said to exist. Then, if it does exist, the challenge would be to attempt to figure out what drives those elevated levels in a person’s blood.

The abstract of the study is here. 

Services and Autistic Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

At IMFAR, Katerina M. Dudley and colleagues have a paper titled "Service Usage, Needs, and Obstacles for Adults Living and Not Living with Family: A Message Regarding Public Policy."  The abstract:

Background: Individuals with autism spectrum disorder (ASD) have substantial difficulty accessing services (Kraus et al., 2003; Kogan et al., 2008), and many of their service needs go unmet (Chiri & Warfield, 2012). However, the majority of studies have focused on children with ASD, and studies with adults have generally only included individuals in their twenties (Shattuck et al., 2012). Thus, there is very little research on service needs of adults with ASD. Even less is known about how service needs for those in middle adulthood may differ depending on their living situation, which is important due to the high number of adults with ASD living with family caregivers (Krauss et al., 2005).

Objectives: The current study investigated the service use in a large sample of adults diagnosed with ASD as children between 1970 and 1999 at the UNC TEACCH Autism Program. Specifically, this study compared services received, unmet needs, and obstacles that impacted service usage for adults living with family caregivers compared to those not living with family caregivers.

Methods: Caregiver surveys were completed for 189 adults with ASD (21-64 years of age; M age=35.5). All participants were diagnosed with ASD during childhood (initial evaluation M age=7.22). Caregivers of adults with ASD completed a survey that included 34 questions about service usage. Analyses examined differences in service usage, unmet needs, and obstacles attaining services for those living with family members and those not living with family (including those living independently, in supervised housing, a group home, or institution).

Results: As adults, 47% of individuals with ASD lived with family members. Analyses indicated that those living with family members received significantly fewer services than those not living with family members. Specifically, they received less support with independent living skills (24% family, 62% non-family; X2=14.97, p<.001), psychological care (23% family, 57% non-family; X2=17.41, p<.001), social work (23% family, 49% non-family; X2=7.40, p=.007), and transportation (26% family, 70% non-family; X2=19.89, p<.001). Furthermore, adults living with family members were reported to have significantly more unmet needs than those not living with family members (65% family, 43% non-family; X2=9.96, p=.007). Families with adults living at home reported more struggles in knowing where to find services (36% family, 11% non-family; X2=13.68, p<.001). These findings hold when comparing individuals living at home to different types of residential categories for those living outside the home (e.g., those living with family members received fewer services than those living independently).

Conclusions: These data indicate that adults living with family members receive approximately half the amount of services as adults who are living outside the family home. Further, adults living with family are reported to have a greater unmet need for services and difficulty knowing where to access services. With approximately half of this adult sample living with family, these results have clear implications for public policy; we need to work to increase services for middle-age adults with ASD living with family and knowledge regarding where to find these fundamental services.

Autistic Man v. Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns. 

Matthieu Vaillancourt writes at The Independent:

As someone who lives with autism, I am angered and disgusted by Donald Trump’s position on the correlation between vaccines and autism. The very fact that he believes in the myth of an autism epidemic is detestable, but worse is the fact that he uses those with autism as vulgar props to gain attention for his campaign. Because of his endorsement of this ridiculous theory, he provides publicity for snake oil sellers who actively exploit autism sufferers and their families.

Donald Trump has no record in helping those with autism, or even showing an ounce of care. His only interest in autism is the posting of misleading comments on social media.

The Impact of Mandates

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

At IMFAR, David Mandell and Colleagues have a paper titled "The Effects of Autism Insurance Mandates on Treated Prevalence and Service Use."  The abstract:

Background: In the US, 42 states have passed autism insurance mandates that require commercial insurance plans to pay for autism-related services. These mandates have not been rigorously evaluated. The few studies of the mandates have not assessed their effects directly on the number of children diagnosed with autism or the services they received as a result of the mandates.

Objectives: To assess the effects of the autism insurance mandates on the treated prevalence of autism and use of and spending on behavioral therapies among children with autism.

Methods: We used data from the Health Care Cost Institute from 2008–2012. HCCI data includes health care claims from three large insurance companies in 50 states and the District of Columbia. A difference-in-differences design with state and year fixed effects was used to identify the independent effects of the mandates, separate from other state characteristics. Outcomes among four groups of children were compared: 1) children in states with an active mandate who had insurance subject to the mandate; 2) children in states with an active mandate whose insurance was not subject to the mandate; 3) children in states without a mandate whose insurance would have been subject to the mandate if one were active; and 4) children in states without a mandate whose insurance would not have been subject to the mandate if one were active. Additional analyses estimated the impact of mandates on treated prevalence in the first, second, and third or later years after implementation. Regression models also adjusted for patient age, sex, insurance plan type, and calendar month and standard errors were adjusted to account for clustering at the state level. A second set of analyses using a similar analytic approach will examine the effects of the mandates on service use among children diagnosed with autism.

Results: Analyses of the effects of the mandate on service use and spending are ongoing. Mandates were implemented in 29 states by the end of the study period. Mandate enactment increased the treated prevalence of autism overall by 12.2% (95% confidence interval [CI]: 6.1%, 18.63%) from a base of 2.4 per 1,000. Treated prevalence increased by an average of 9.9% (95% CI: 4.7%, 15.2%) in the first year after enactment, by 16.6% (95% CI: 7.1%, 26.0%) in the second year, and by 17.2% (95% CI: 8.6%, 25.8%) in the third or later year.

Conclusions: This study represents the most rigorous analysis to date of a widespread state-level insurance mandate policy in the US. We found that autism mandates have had a statistically significant but small effect on treated prevalence, which remains far below what would be expected based on community prevalence studies. Mandates may be a necessary but not sufficient policy for helping children obtain services reimbursed through private insurance. Analyses that will be completed prior to the conference will examine whether the mandates had an effect on use of behavioral health care, functional therapies, and other types of relevant care and total and out-of-pocket spending on these services paid for through private insurance.

At Kaiser Health News, Shefali Luthra reports on the study and quotes Alycia Halladay, chief science officer at the Autism Science Foundation:

"You can't rely on these mandates alone. You can't say, 'OK now, everything's hunky-dory, and everyone's being served the right way,' " she said.

There are a few possible reasons the coverage requirements aren't always translating to people getting treatment.

Even if insurers have to cover care, there is wide variation in how generous the coverage is. Plans can argue that certain services like speech and occupational therapy as well as applied behavioral therapy aren't necessary. Or insurers can require higher cost-sharing, or reimburse at a low enough rate that providers don't participate. Also, not all mandates are equal — some states cap coverage, allow ceilings to the number of visits or limit the age range of beneficiaries.

Even when a mandate is in place, it's often unclear what insurance plans are actually required to pay for, said Halladay. Plus parents of autistic children may not realize what services are covered, she added.

Then there's also the fact that, compared to the need, not enough doctors are familiar with autism treatments, noted Mandell, who co-authored a qualitative study published last November in the journal Autism. The research presented Wednesday will appear this summer in JAMA Pediatrics.

"There are long waiting lists for people to get medical referrals for their autism-related problems. There are wait lists all over the place. And that's because there aren't enough people trained," Halladay said. "It's not an easy problem to solve."