I'm listening to NPR talk about the cost of autism on families. Right now. I'm live blogging this discussion.
The rate of autism in NJ is 1 in 47 for boys.
Dr. David Mandell looked at the expense of autism on families. He looked at the cost of autism on earnings. What happens to the family's earning power when they have a child with autism? The silent cost of autism. Do parents work more to pay for therapy and education or do they have to drop out of the workforce to care for their child? Findings – No difference among fathers. Fathers of autistic children did not work more than other fathers. Women dropped out or cut back on hours to care for their children. Huge impact on family income.
Very difficult to take care of autistic kids. Mothers take on the job of chaffeur to find the right services of kids. Also, have to navigate health care bureaucracy.
A mom calls in. Reports that she has to do all this stuff. Had to quit her job. Has to wait for the school bus and manage the after-school therapy. "Almost forced to be home."
A dad calls in. Too much to do. My wife had to quit her job.
OK. That's it. Now here are the important links:
Mothers of children with autism earned, on average, less than $21,000 a year, the researchers found. That was 56 percent less than mothers whose children had no health limitations and 35 percent less than mothers whose children had other health limitations.
Autism costs soar to $137 billion per year.
UPDATE: Yesterday was autism awareness day. So, there are lots of good links out there. I'm just going to keep adding to this post, rather than starting a new one.
Why do some kids grow out of autism? Because they have super active moms who make sure that their kids get enough services. What about those kids whose mothers aren't able to do all that shuffling and must keeping working?
Apt. 11d 
The rate of autism in NJ is 1 in 47 for boys.
I never know what to make of these statistics. I feel torn between, “Wow! That’s a huge number of autistic boys!” and “Wow! That’s huge evidence of over-diagnosis!”
You yourself have talked about how much having the diagnosis helped you get the services that your son needs. If a child would be helped considerably by the services, and I’m his doctor, I don’t see how I could ethically withhold the diagnosis, even if I wasn’t sure it was accurate.
My neighbor had 3 children diagnosed (or “diagnosed”) with autism. She homeschooled them, and prayed to Jesus over them, and had chelation therapy for them, and withheld vaccinations from them. And now they are older and cured (or “cured”) and don’t have autism anymore.
I am by no means an expert, and I certainly don’t want to say that her kids didn’t have significant problems, and certainly may be on the Spectrum. But you who I am most confident about putting on the Spectrum? The mother.
I am all in favor of getting every kid the services that that kid needs to thrive. My concern is that the kids aren’t getting those services unless they’ve got the “Autism” label, and that issue is itself skewing the science.
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With various stigma and denial issues, I wouldn’t assume all misdiagnosis is in the false positive direction.
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Whether or not the diagnosis is accurate or not, these are children who need extra help and for whom the financial and time burden of finding and paying for that help is falling on mothers/women. If you pull back a bit, it’s part of a larger story similar to the sandwich generation families where moms/women again are the caregivers for the elderly.
I cannot begin to imagine a situation where a family has a child/children with special needs and also an aging parent who must be cared for. The financial and emotional stress…
I worked in childrens’ mental health and like autism, for parents who even HAVE the resources to pay for help, navigating the system, finding out what are the best treatments/strategies/therapies and figuring out where to go to get those is a huge burden. Each and every family seems to have to reinvent the wheel.
Being an advocate for your child is a fulltime job.
We all benefit when those needing extra assistance receive that assistance without it being a huge burden on any particular family. Offloading it to families just hides the cost in emotional, financial and mental health.
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With various stigma and denial issues, I wouldn’t assume all misdiagnosis is in the false positive direction.
That’s probably true, too, but it just reinforces that, to some degree on the margins, whether or not you are diagnosed depends on how much you want or don’t want the diagnosis. When I see the 1 in 47 stat, I wonder if those margins are 1% of the cases, 10% of the cases, or 50%.
I would be interested to see how the changes in the rate of diagnoses changed in relation to other conditions/ syndromes for which diagnosis is based on a cluster of observations rather than a single specific test. Has ADHD diagnoses declined or level off as Autism increased?
Autism is currently so diverse that I can’t help but assume that eventually the science is going to find that the current lumping has to be split into several unrelated conditions. Which will lead to political backlash from people who don’t want their lobbying group divided. But now the politics and the science are so intertwined that there’s very little chance of objectivity.
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And, as with other debates that seem like they should be about science or facts, but turn out not to be, government policies, including local government policies that might be executed in arbitrary ways that depend on iffy individuals.
If in NJ or CA, services are available for autism, but not apraxia, I think most clinicians wouldn’t hesitate to give the diagnosis that will give the services they or the parents think the child needs. In a clinical setting diagnosis isn’t done for scientific purity but to develop a treatment plan. That’s true for straight out physiological diagnosis, but even more true for diagnoses that can only be defined by a set of behaviors and checklists.
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I generally. agree with the idea that there are burdens that should be shared by society, for reasons of cost, efficiency, and compassion, but those burdens are much broader than those of identified autism. I become uncomfortable when we start talking about sharing that burden, but dismiss, say, for example, sharing the burden of having a nonfunctional parent (one who is dead, in jail, or an addict, for example)
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That’s 1 in 47 boys, which if you think of it, is not that out of line. Way more than 1 in 47 boys and men are quirky and odd.
There are some gender issues in diagnosis. It’s been a while since I read up on this, but I believe that ADHD tends to be underdiagnosed in girls, because while those girls may be totally spaced out, they are much less likely than the boys to cause disruption. (One of my young female relatives never had any attention span at all, but she was only diagnosed with ADHD in college, which was where she started to flounder academically.) Likewise, girls on the autism spectrum often have more subtle symptoms and are often better at camouflage. (Although I personally think I have an easier time flagging autistic female behavior. It’s a lot harder for me to figure out exactly where the border lies between normal male behavior and autistic behavior–in that respect, I don’t think Simon Baron-Cohen is that far wrong.)
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“…sharing the burden of having a nonfunctional parent (one who is dead, in jail, or an addict, for example)”
I don’t think anybody’s ever figured out how to do that.
Even just a mostly competent but somewhat unhelpful parent (like one that won’t fill out a FAFSA–a very common scenario) can really screw up a kid’s life.
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I know one who did that.
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My husband’s employed less than half-time because of Youngest’s autism. He’s had to make sacrifices so someone’s available after school or during school hours. We both juggle for the little bit of overlap that sometimes requires.
Right now I’m dreading having to phone one of the bureaucracies to see if they actually started the ball rolling on a new diagnosis which she’ll need if she wants to attend college or university. Oh, and did I mention that her teacher left her at the public library yesterday? She was reunited with her class before they’d gotten far down the road to walk back to school but still. . . .
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My husband and I once calculated what autism had cost in lost income and out of pocket expenses – came up with $500k, in a generous school district with my husband working at home, which allowed me to work part-time, and with a child who didn’t have severe behaviors necessitating more expensive respite. Yeeeeah.
I really appreciated the super-active mom article. Among the kids we’ve known, the quality and quantity of the interventions seemed to make a difference among the group that made any progress (and lots of good therapy just didn’t happen then without a pushy parent).
There are two other points I wish they’d made – First, that not only are those moms advocating and navigating bureaucracy and hiring specialists, they are also participating in the therapies at some level and teaching/generalizing skills themselves. Even if they don’t do it formally, learning how to effectively teach your child and knowing what he’s working on and bringing it into your own interactions with him is important.
And second, that kids who are still behind in later childhood can catch up. Mine did and I know others.
Years ago, I wrote a blog post about the increasing numbers, from the perspective of the parent of a child diagnosed at the beginning of the boom. Hope it’s not too tacky to link here.
http://artemisiabackup.blogspot.com/2007/11/veterans-and-epidemic.html?zx=ef32e8ec9c5730e5
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My uncle was moderately retarded, and my grandmother spent enormous amounts of effort making things work for him. My dad, who cruised academically through high school and college (and actually got a PhD from Berkeley after he came home from the war) got far less time and attention from her, because he didn’t seem to need it. My mother was always convinced that some of the needier and less attractive parts of his personality were due to that.
So that’s a family cost not calculable in money, and which has had impact into my generation.
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I object to the term “grow out of autism”. One never grows out of autism. One develops sufficient coping mechanisms and adaptive behaviors to appear “normal”.
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