Moms of autistic children work less, earn less

NEW YORK Mon Mar 19, 2012 11:02am EDT

An autistic child peers from between curtains at the Consulting Centre for Autism in Amman, March 30, 2010, one of the few places in the country that helps children with the condition. REUTERS/Ali Jarekji

An autistic child peers from between curtains at the Consulting Centre for Autism in Amman, March 30, 2010, one of the few places in the country that helps children with the condition.

Credit: Reuters/Ali Jarekji

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NEW YORK (Reuters Health) - U.S. families with autistic children earn nearly $18,000 less than parents of normally developing kids, according to a new report.

The gap is mainly due to mothers not having a job or working fewer hours, researchers found.

"The needs of children with autism really straddle a number of service systems and there is a tremendous amount of finger pointing in terms of who's going to pay," said David Mandell, associate director of the Center for Autism Research at The Children's Hospital of Philadelphia.

"Mothers are leaving the workforce to cobble this care together for their kids," he added.

Autism spectrum disorders, which range from mild Asperger's syndrome to severe mental retardation and social disability, affect about one in 110 children in the U.S., according to the Centers for Disease Control and Prevention.

As more and more kids are diagnosed with the disorders, the nation is grappling with how to pay for the extra care these children need, which may cost as much as $3.2 million over a lifetime.

Mandell said that until now, the impact on individual families in terms of employment and earnings had not been clear.

For the new work, Mandell's group used data from national household surveys done yearly between 2002 and 2008, including 261 children with autism and more than 64,000 without health problems.

After accounting for factors such as parents' age, race, education and health, fathers of kids with autism were just as likely to be employed as fathers of typically developing children. The same was true for how much fathers worked and earned.

For mothers, however, there was a marked difference. Compared with mothers of kids without disabilities, those who had autistic children were six percent less likely to be employed, worked seven hours less per week and had less than half the annual income.

All told, households with autistic children earned $17,763 less a year.

The researchers couldn't say for sure that the gap is caused by having a child with autism. But Mandell said today's system means families have to shuttle their kids between several different providers.

"I think it's a case of the mother becoming the case manager and the advocate for the child," he told Reuters Health. "If these kids were appropriately cared for it wouldn't be such a burden for the family."

Guillermo Montes, a researcher at St. John Fisher College in Rochester, New York, said the new study shows families with children with autism make different financial decisions than others.

"By putting their kids first, these decisions result in lower and more unstable family income," Montes, who was not involved in the new work, told Reuters Health by email.

"State legislatures, employers and the federal government have to engage these families in a conversation about how to best assist them," he added. "Any assistance must preserve work flexibility and the wide variety of work and care arrangements which are key to achieve a work-family balance that works for kids with autism, their siblings and their parents."

SOURCE: Pediatrics, March 19, 2012.

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Comments (2)
sbrown68 wrote:
While shuttling children from place to place can be a drain on resources, other issues abound.
1. Stress of having any child with a disability is higher than “normal,” but for parents of children with ASD’s it can be like soldiers in combat. Working becomes tough in that circumstance if it is not absolutely required. If you do, you may not operate at peak performance and thus are not eligible for the promotions and raises that others are.
2. Child care. Finding child care for children with disabilities is very difficult, especially as they age. Many home based programs will not take the children because they do not have the training or the staff. Aging out of program based activities does not mean the child can stay home alone. Summers and vacations can be a serious gap in child care. Not many jobs give the freedom to take all the time off that might be needed. No child care- no full time job.
3. Meetings. CSE meetings. Parent-teacher meetings. Meetings with the principal. Meetings with the service coordinator… You name it, it takes place during working hours and that interferes with the day job. The more time you need to take off, the less eligible you are for promotions and raises.

They all add up to needing less work time and earning less pay. We do it for our kids. It is a no brainer for those in the trenches.

Mar 19, 2012 9:26pm EDT  --  Report as abuse
SandraB wrote:
It isn’t just that we have to tour doctors, psychiatrists, nutritionist etc, usually to little avail, it’s also that our children themselves need so much support, so much calming from their high anxiety, and are so much younger emotionally for so long. I have a 14 year old, but I am really at home with a 7 year old who cries if I am not there and he develops a headache.
Good research shows that the cortisol level of mothers of autistic children resembles those of war veterans, perhaps because of the stress, but also possibly because of whatever it is that is causing the autism in our children. We are tired, and in my case at least, it is hard to keep up hope. This too makes work harder.

Mar 20, 2012 6:19am EDT  --  Report as abuse
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