Adults: ASD, the Cliff, Siblings

Michell Andrews writes at Kaiser Health News:

It’s getting easier for parents of young children with autism to get insurers to cover a pricey treatment called applied behavioral analysis. Once kids turn 21, however, it’s a different ballgame entirely.

Many states have mandates that require insurers to cover this therapy, but they typically have age caps ranging from 17 to 21, says Katie Keith, research director at the Trimpa Group, a consulting firm that works with autism advocacy groups. In addition, the federal Centers for Medicare & Medicaid Services recently announced that all Medicaid and Children’s Health Insurance Programs for low-income families must cover comprehensive autism treatment for kids—until they’re 21.

After I wrote about the new Medicaid coverage requirements, the mother of a 23-year-old with autism wrote in asking about coverage options for her son.

Unfortunately, once someone with autism turns 21, “they fall off a cliff,” says Lorri Unumb, vice president of state government affairs at Autism Speaks, an advocacy organization. “It’s the next big frontier that’s got to be addressed.”

Parents of older children have a few options. Some state autism mandates don’t have age caps, including New York, California, Massachusetts, the District of Columbia, Wisconsin and Indiana, according to Keith.

If an insurer denies therapy and a parent lives in one of the states that has an age cap on its autism mandate, it’s worth appealing, Unumb believes. The appeal may be bolstered, she said, by the federal mental health parity law, which bars plans from imposing quantitative or qualitative treatment limitations on mental health care that are more restrictive than those on benefits for physical health conditions.

Like dollar caps on benefits, age is a quantitative limit, says Unumb.

Although the courts have yet to address the issue, she says, “In my opinion, all of these age caps are probably invalid under mental health parity.”

Nicholette Zeliadt reports at SFARI:

Siblings of people with autism face a unique set of challenges: They have a 20-fold increased risk of developing autism themselves, and even those without the disorder may show subtle signs of autism. These traits, such as repetitive behaviors and difficulties with social interactions and communication, are collectively known as the ‘broad autism phenotype,’ or BAP.

A new study suggests that siblings with BAP tend to struggle with employment, relationships and mental health as adults. The findings, published 5 September in the Journal of Autism and Developmental Disorders, highlight the need for greater awareness of BAP in both children and adults.

Reproductive Stoppage

In JAMA Psychiatry, Thomas Hoffmann and colleagues have an article titled "Evidence of Reproductive Stoppage in Families With Autism Spectrum Disorder."  The abstract:

Importance Few studies have examined the curtailment of reproduction (ie, stoppage) after the diagnosis of a child with autism spectrum disorder (ASD).

Objective To examine stoppage in a large, population-based cohort of families in which a child has received a diagnosis of ASD.

Design, Setting, and Participants Individuals with ASD born from January 1, 1990, through December 31, 2003, were identified in the California Department of Developmental Services records, which were then linked to state birth certificates to identify full sibs and half-sibs and to obtain information on birth order and demographics. A total of 19 710 case families in which the first birth occurred within the study period was identified. These families included 39 361 individuals (sibs and half-sibs). Control individuals were randomly sampled from birth certificates and matched 2:1 to cases by sex, birth year, and maternal age, self-reported race/ethnicity, and county of birth after removal of children receiving services from the California Department of Developmental Services. Using similar linkage methods as for case families, 36 215 pure control families (including 75 724 total individuals) were identified that had no individuals with an ASD diagnosis.

Exposures History of affected children.

Main Outcomes and Measures Stoppage was investigated by comparing the reproductive behaviors of parents after the birth of a child with ASD vs an unaffected child using a survival analysis framework for time to next birth and adjusting for demographic variables.

Results For the first few years after the birth of a child with ASD, the parents’ reproductive behavior was similar to that of control parents. However, birth rates differed in subsequent years; overall, families whose first child had ASD had a second child at a rate of 0.668 (95% CI, 0.635-0.701) that of control families, adjusted for birth year, birth weight, maternal age, and self-reported maternal race/ethnicity. Results were similar when a later-born child was the first affected child in the family. Reproductive curtailment was slightly stronger among women who changed partners (relative rate for second-born children, 0.553 [95% CI, 0.498-0.614]).

Conclusions and Relevance These results provide the first quantitative assessment and convincing statistical evidence of reproductive stoppage related to ASD. These findings have implications for recurrence risk estimation and genetic counseling.

Shaun Heasley writes at Disability Scoop:

The finding that many families choose to stop having children after learning that their son or daughter is on the spectrum may mean that current estimates on the odds of having a second child with autism could be unreasonably low, researchers said.

When reproductive stoppage was taken into account, the study found that the odds of having a second child with autism rose to 10.1 percent for full siblings, an increase over the 8.7 percent estimate found when families who stop having children are not factored in.

The study did not examine why parents of children with autism are more likely to stop having kids, but researchers said it could be due to concerns about having another child with the disorder or that parents feel they are unable to care for additional children after having one on the spectrum already.

More Risk Factors

Most scientific studies are careful to distinguish correlation and causation, but a casual reader of the news might scan recent stories and conclude that "everything causes autism."

From Time:

More research finds a family-based risk of autism among siblings, which raises the question of what parents can do to lower the risk among potentially at-risk youngsters.

Researchers from Aarhus University in Denmark report in the journal JAMA Pediatrics that children with an older brother or sister diagnosed with an autism spectrum disorder (ASD) are more likely to be on the spectrum themselves.

According to their study of about 1.5 million children born in Denmark between 1980 and 2004, those who had an older sibling diagnosed with autism had close to a seven-fold increased risk of developing autism as well. Siblings who shared the same mother and father had a 7.5 greater risk of having autism, whereas maternal half siblings had a 2.4 greater risk. Paternal half siblings didn’t have a statistically significant increase in risk.

From Healthline:

Expectant mothers should be tested for thyroid issues to reduce their child’s risk of developing autism and other complications, experts say.

New research published in the Annals of Neurology shows that mothers with low levels of the thyroid hormone T4, or throxine, are four times more likely to give birth to a child with autism. The more throxine deficient a mother is, the more pronounced her child’s symptoms can be, researchers said.

Scientists from the Houston Methodist Neurological Institute and Erasmus Medical Centre came to this conclusion after studying 4,000 Dutch mothers and their children. This finding coincides with previous research that shows a mother’s throxine levels influence a child’s neurological development.

“It is increasingly apparent to us that autism is caused by environmental factors in most cases, not by genetics,” lead author Dr. Gustavo Román, a neurologist and neuroepidemiologist who directs the Nantz National Alzheimer Center, said in a press release. “That gives me hope that prevention is possible.”

HealthDayNews reports:

Inducing or helping along labor in pregnant women may raise the risk for having a child with autism, particularly if that child is a boy, a new study suggests.

Experts, including the Duke University researchers, are quick to caution that there are often overriding medical reasons to induce or augment labor that should not be ignored because of any potential risk of autism.

Inducing labor involves stimulating contractions before labor has started through various means, and augmenting labor refers to the practice of helping labor progress more quickly with oxytocin (Pitocin), a drug that stimulates contractions.

... 

The new study, published online Aug. 12 in JAMA Pediatrics, is the largest to date that looks at autism risk and factors affecting labor and delivery. The findings don't prove that labor induction or augmentation cause autism, they just show an association. Exactly how labor induction could affect autism risk is unknown, but the drug oxytocin may play a role.

CBS reports: 

Other conditions during pregnancy have recently been linked to increased autism risk. An August 2012 study showed that mothers who were obese were 67 percent more likely to have children with the disorder compared to those who maintained a normal weight during pregnancy.

Taking the anti-epilepsy drug valproate has been linked to a five-fold higher risk of having a child with an autism spectrum disorder in an April 2013 study published in JAMA. Exposure to air pollution while with child was also significantly connected to higher rates of autism, a June 2013 Environmental Health Perspectives study revealed.

Autism and Recurrence among Siblings

MedPage Today reports:

Among families who have a child with an autism spectrum disorder (ASD), the risk of a subsequent child developing an ASD may be higher than previously estimated, a multicenter study showed.

In a study of 664 infants born into familes with an affected child, the ASD recurrence rate was 18.7% (95% CI 13.34% to 25.5%), with greater risks in male infants and in those with more than one affected older sibling, according to Sally Ozonoff, PhD, of the MIND Institute at the University of California Davis, and colleagues.

Most previous studies have put that figure at 3% to 10%, with one recent report estimating a 14.2% recurrence rate, the researchers reported online ahead of the September issue of Pediatrics.

Susan Levy, director of the Regional Autism Center at Children's Hospital of Philadelphia, said in an interview with MedPage Today that she is not surprised by the higher rate.

"There have been hints and suggestions from data from different, smaller studies that have implied that the recurrence risk is really higher than the 10% that we have ended up quoting," said Levy, who is a member of the American Academy of Pediatrics' autism subcommittee.

"So this [study] is confirmation and it's really consistent with other results I've heard about," she said.

The Autism Baby Boom

Amy Lennard Goehner reports at The New York Times:

"We estimate there are going to be half a million children with autism in the next 10 years who will become adults,” said Peter Bell, executive vice president for programs and services of the advocacy group Autism Speaks.

Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.

“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”

...

Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

“If an individual needs 24-hour services, the staffing ratio is one to one,” said Charlie Lakin, who heads the Research and Training Center on Community Living at the University of Minnesota. “That means fewer people will get served, resulting in long waiting lists for other families.” Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin.

...

Among the most powerful advocates are siblings of those with developmental disabilities. “Sibs have always played a really important role; we just haven’t identified them as sibs,” Mr. Lakin said. “We’ve identified them as agency leaders and social workers occupationally. But the real impulse of their work is that they were a sibling.”

Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”

At About.com, OAR President Peter Gerhardt writes on policy responses:

• There exists a significant need to further identify and research potential evidence-based, and socially valid, interventions for adolescents and adults with autism in the community. While interventions based upon the principles of applied behavior analysis have the most research, much more is necessary given the current emphasis on life in the community.

• Adult outcomes indicate that transition plans developed under the Individuals with Disabilities Education Act of 2004 (IDEA) for individuals with ASD fail to comply with the transition requirements contained therein such that individuals with autism are generally not provided with the skills necessary to successfully move from school to post-secondary education, integrated employment (including supported employment), adult services, independent living, or community participation (emphasis added). Not only does this need to change but the fiscal resources necessary to support such change are, potentially, available, under IDEA.

• Within the developmental disabilities adult system more effective strategies of staff recruitment, training, and retention need to be developed and implemented on a consistent basis to ensure both better-trained staff and more consistent programs and supports for adults with ASD.

• While continuing the necessary focus on biomedical, genetic, and/or etiological research, an addition emphasis on research addressing "quality-of-life" and related intervention variables for adults with ASD needs to be actively implemented and the results disseminated in such a way to accessible to both families and professional staff.

• Efforts need to be undertaken to shift at least some of the focus of current public awareness efforts away from emphasizing the deficits and challenges associated with living with ASD to include attention to the strengths and competencies of individuals on the spectrum and the benefits of their active inclusion in adult life in the community.