Impact of Autism on Families

Ricardo Dolmetsch, an associate professor of neurobiology at Stanford University, says his son's autism diagnosis has changed both his personal and professional life.

This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research, such as through managing projects and writing grant proposals, she has put her own scientific career on hold in order to care for their son and his brother, age 7. In his opinion, Dolmetsch says, his wife has earned an honorary doctorate "in getting insurance coverage for stuff."

"The finances of autism are brutal," Dolmetsch says. "The amount of continuous care these kids need is a lot. … The only thing that works at all are behavioral treatments," which, depending on the state and one's health plan, may not be covered by insurance, he says. "They're very intensive… and they're horrifyingly expensive."

Insurance companies MUST start paying for autism treatment. 


6 thoughts on “Impact of Autism on Families

  1. I thought it was interesting that you described yourself on the Atlantic as a “special needs parent” (or maybe “special needs mom”), and it reminded me of the 5-10 years when my mom had an essentially full-time job taking care of her mother and aunt. Not physically, though there was some of that, but she was responsible for navigating the health care system for both of them, learning about different treatments and drugs and interactions and side effects, etc., etc. and making sure their insurance covered what they needed to get. In a way, she was like a general contractor for them, dealing with the eye doctor, the mobility issues, the high blood pressure, and whatever other major health problems they were facing. She was able to do this because she basically transitioned from a very active stay-at-home mom to an elder care specialist.
    It seems like special needs parents have to do this for their kids constantly, but I wonder, do you think it’s possible or desirable for this to be more professionalized? How much of your work is making decisions about what’s best for your son – something that might require knowing him very well as well as knowing all the possible treatments – and how much of it is bureaucratic bs, where everyone knows what the best course of action is but you have to work the system to get it paid for?

  2. “Insurance companies MUST start paying for autism treatment.”
    And everybody must start paying even more for insurance (private or public, it won’t matter).
    A few years back, the profit margin for health insurance companies was 3.4%. Speaking as someone who grew up in small business, for that kind of money, it’s barely worth getting out of bed. The only thing that makes it tolerable is that they handle such vast amounts of money. With that knife-edge profit margin, every new dollar they spend is going to be extracted from the general public.

  3. af – Megan described me as “a special-needs mom,” not me. One of my co-bloggers is also a special needs parent and I think we’ll do some autism politics blogging together. While I didn’t write that, I’m perfectly happy to use the term “special needs mom” as part of my job description, because that’s what I do with a big chunk of my time.
    My mom is doing the same thing that your mom did, af. Dealing with paperwork bs and coordinating health care workers and managing money for an older relative. Not that the money is running out, she’s looking around for a home for the woman. It’s a HUGE amount of work.
    Special needs parenting involves much of the same kind of nonsense. Paperwork. Research. Driving around. Facilitating friendships. I’m taking a mental break from it this year, because I got burnt out last year.
    Could this stuff be easier? Could there be less bureaucratic bs in care work? YES!!!! The trouble is that the system is set up to prevent treatment. Schools and insurance companies don’t want to pay for any of it. They purposely make it difficult. The result is that middle class families, like ours, end up getting the right treatments for the kids, because we can afford to have someone do this job full time. Other families are not so lucky.

  4. I can only imagine that a lot of the time is spent reinventing the wheel family by family. I don’t know the special needs side of things but in my “day job” in childrens’ mental health, navigating that system is again a full time job. Finding the right practitioner, the best practitioner, etc. – there is no central agency or clearing house to figure it out. It’s all word of mouth and individuals spending hours researching.

  5. I new someone who had a elder care consulting business, professionalizing that work. Given the complexity of the system and the money involved I see those jobs growing. But there’s no doubt that they would to benefit those who have the privilege to pay for the service, allowing them to more efficiently get what public funds were available.
    I don’t think there can be less bureaucracy as long as there are money transfers; insurance. companies or government are always going to have rules, and rules mean bureaucracy.
    Didn’t new jersey pass a law requiring insurance to pay for autism treatments? Is that having an effect on access to care?

  6. I sometimes say that I have two full-time jobs: being a history professor and being mom to Autistic Youngest. Her dad pours effort in, too, mind you – he’s chronically underemployed because someone has to be there as a back-up (like when I flew to the Berks last summer and she was suspended for flailing at a teacher when they unwisely decided she could stay in class for a film – Autistic Youngest can’t handle watching fictional shows with conflict).
    Now she’s well into her teenaged years and the tiny bits of help we’d had earlier are disappearing. The people at the care network don’t do a damned thing with my calls except interview me for the tenth time to create yet another complete life history for our girl. Then it seems to all disappear into the ether with no services or response until you pester again and again and again. . . .
    It’s not just treatment, it’s a culture that needs to say “yes, we understand caregiving and accommodating non-neurotypicals in our world, not just assuming their families will take care of them while the rest of the world marches on”.

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