In yesterday New York Times magazine, Ron Suskind relates an incredible story about he and wife reached their non-verbal autistic son through his obsession with Walt Disney movies. A number of friends forwarded the article to me, because it was a heart-warming tale. But between the lines, I picked up another theme. It was also a tale of parents working entirely on their own to help their son without a roadmap or assistance from professionals.
Suskind writes,
Since Owen turned 3, the daunting, never-enough demands of autism have remained inelastic, bottomless. Not knowing what really works, or helps, makes identifying the inessentials all but impossible. You try everything. And we have: from changing his diet to gluten-free to auditory processing, when he spends hours doing high-speed computer tests while different noises ring in his ears. Lots of families run themselves into bankruptcy. We’ve spent about $90,000 a year on Owen. Actually, that’s not so much higher than the norm — autism organizations estimate that it costs about $60,000 a year to provide adequate educational, medical and therapeutic services to an autistic child. About half of that can go to school tuitions, often with some of the money coming from public funding.
He and wife struggled to find an appropriate school and therapy for Owen (yeah). They came up with Owen’s Disney therapy on their own. His wife even homeschooled Owen for a few years.
In the New Yorker, Andrew Solomon tells an entirely different parenting tale. A tale with a horrible ending. Solomon interviews Adam Lanza’s father, Peter Lanza. Lanza talks about the struggles that he and his first wife faced raising a child with Asperger’s and some sort of mental illness. Again, Nancy and Peter were entirely on their own dealing with a child with increasingly frightening behaviors. Ultimately, Nancy homeschooled her troubled son when he wasn’t able to function within a regular school.
Why are parents dealing with these burdens without support?
In our country, schools are forced to care for all children, including those with developmental disorders and mental illnesses. Schools never wanted this job. It’s expensive. Therapy doesn’t fit into their core mission of academic instruction. The courts told them to do it, so they do a half-assed version of helping these kids. Often, parents have to step in to fill in the many voids.
We need to make some changes. Either the federal government has to step in and provide funding for public schools to properly care for disabled children and their families, or that job should fall to another group – medical professionals, maybe. These families need more specialized schools, more therapy, more parental guidance, more social opportunities, more of everything.
Owen Suskind is a success story, and we all love success stories. But how many kids like Owen are trapped in their heads, because their parents didn’t stumble across the correct road to unlocking their thoughts? And how many families, like the Lanzas, are tortured and troubled? Change is needed.
Apt. 11d 
I think you are picking out a sort of general theme, where public bodies decide something is swell to do, and then make an organization with a related mission do it. Disabled-person paratransit being made the responsibility of the subway system, for example, and paying for low-cost housing being a tax on development permissions for market-rate housing. And your example of schools/mainstreaming etc. I generally think you are better off to narrowly define the public purpose you are trying to achieve, think about the level of government where it ought to happen, and do it on budget.
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As a funding issue, I think this is just another example of the problems caused by absurd number of small school districts. Obviously, there are other issues besides funding.
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Would you want to put a special ed kid that you cared about in the Chicago or NYC public schools?
Big districts aren’t a panacea.
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Rather than the small, poor districts around here? In a heartbeat. You don’t have to drive ten miles from my house to hit districts that fail every student.
If you compare the Chicago and NYC public schools to some of the fancy suburbs around here, I assume the fancy suburbs would come out ahead. The districts were carefully constructed to make it impossible to live in without a car and as difficult as it is legally possible to make it to live in if you are poor. Which is a different problem.
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An option might be regional cooperatives. New York State’s BOCES system has seemed to be somewhat successful. Rather than every district in a county having its own special ed system, there are regional schools.
(Disclaimer: I am a former Nassau BOCES employee.)
Large urban school districts have problems not necessarily because they are large but because of the poverty in urban areas.
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But all of those solutions (providing solutions within the inclusive public service) were a response to the horrific examples of institutionalized care and housing projects (and, I’m guessing, some equally unacceptable transit services).
I’m glad that the interview exists and that Lanza’s father decided to talk. I think we need to here more stories from people inside those families, including siblings. But I think we as a society haven’t really figured out what we will do in cases of diminished mental capacity, and there are no easy solutions. What would more of everything look like in the Lanza family?
One of the issues seems to be a true unwillingness to deal with the changes the mother was seeing in her son (not surprising, really). I think similar issues arise with aging related decline in function (though, there the threat to others usually comes only through the use of machinery, like cars, and not potential violence).
The article was a worthwhile read — thanks for the link.
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But all of those solutions (providing solutions within the inclusive public service) were a response to the horrific examples of institutionalized care and housing projects (and, I’m guessing, some equally unacceptable transit services).
Yes. Generally speaking, I’d expect that if you separate out the services for a group with disabilities, you will eventually wind-up with a system ever more underfunded then before.
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I’ve been listening to the stories about nursing home care with some degree of horror.
http://www.npr.org/blogs/health/2014/03/05/286261742/a-third-of-nursing-home-patients-harmed-by-their-treatment
I do not think that adequate care and support can be provided, except in the context of community. I don’t know what level of cost will be supported by society, but I think we should be having those conversations and that it is generally the case that in the US, the responsibility falls mostly on the individual family.
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There was a lot that was horrific about institutionalization but there were some small (very small) benefits to it: resources could be pooled and spent more efficiently (theoretically) and the institution had to take you in if you qualified. Deinstitutionalization addressed a lot of the horrors of separated group care but shifted the burden on to individual families, as Laura mentions. It seems like community “institutionalization”, a system that combines the benefits of both systems, would be a step forward to improving on the current system. Group homes do this to some extent although the quality of those varies greatly and they don’t meet the needs of higher functioning people.
Of course, funding, we don’t have enough of it or the political will and support needed to devote enough resources to this issue to really make a difference.
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There are pretty serious ideological obstacles in the US to thinking about collective obligation for random individual problems. Remember the conservative-libertarian response to Hillary’s “It Takes a Village”? As long as the mythology of rugged individualism persists, society will continue to ignore the disabled.
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I read both articles (the Lanza one just now). and on one level I hear you about how parents shouldn’t have to do this all alone *but* on the other, parents are the ones who spend the most time with their children, who make their children their sole source of attention. Teachers have 20+ students; guidance counselors and school psychologists have many many more students. The reason why the burden falls on the parents is because they have more attention to pay to the child. Attention is one of those weird things economically. Parents do it for free. Teachers, support staff, etc. have to be paid. And it’s time consuming and in some ways disruptive to the individual who needs to be paid attention to.
Maybe we need to reframe autism support not as an issue of care/caretaking but in terms of science. Scientists in labs observe phenomena, record data, analyze data, and reach conclusions. That’s what Suskind’s parents did. But it takes so much work. We pay for that kind of endless and (to me, but I’m not a scientist) boring process of scientific observation via grants. But those grants pay for research that will make discoveries that can be monetized. An individual’s well-being cannot be monetized.
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Wendy said:
“Teachers have 20+ students; guidance counselors and school psychologists have many many more students. The reason why the burden falls on the parents is because they have more attention to pay to the child.”
Right. That’s why it’s such a disaster if a child does not have that one person in their life who cares about them more than anybody else. If a teacher has 20 students and fails one, that’s 95% success, but if a parent has 1 child and fails that 1 child, that’s 100% failure.
One of the problems with the it-takes-a-village thing Sam was mentioning upthread is that none of us can kick back and expect “the village” to do the heavy lifting for us. Obviously, the village can make life easier (or harder), but the village just doesn’t care enough about any particular child to be a safe guardian.
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“But those grants pay for research that will make discoveries that can be monetized”
That’s really not true. But we do expect collective good and knowledge to come from the work. And, a individuals well being isn’t collective or well monetized.
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It would be nice if the federal government would fund IDEA. It would also be nice to have an independent definition of conditions. I have the impression many battles between parents and schools are reinventing the wheel.
On the other hand, very, very few autistic children harm anyone outside their families. I fear the effect of labeling a child with social difficulties a danger to society, merely because he’s weird.
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I’ve been fixated on the story of the mom in Florida who tried to drown the kids in the minivan. HEre’s another case where society failed someone who needed help. Why isn’t her abusive husband’s picture all over the news? He clearly failed his kids as much as their mother did, yet she’s the only one who’s villainized? How about the teachers or neighbors who might have known the kids were in danger in that house yet did nothing?
That was one thing that I really got from Peter Solomon’s book, how totally alone those parents were. In half the cases in that book, the dad left (like Lanza did), leaving the mom with a schizophrenic child or a brain-damaged child or a severely disabled child. The dads were always like “Well, I couldn’t take it, so I just left.” Kind of like the women were the adults so they had to stay, while the men were like children who could just quit and walk away.
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In Peter Lanza’s defense, he was accepting his (ex)wife’s opinion, and Adam’s clearly expressed wishes. “He’s worse when you’re around/you make him worse/go away” is not an argument to force your presence on someone.
I do know couples who have, at times, had family structures along the lines of, “Dad’s in Brazil 7 days out of 9.” Or, “mom’s at the city apartment 4 nights out of 7.” When it is normal for children to see their parents at predictable, scheduled intervals, the transition from married to divorced is not as clear-cut as in other situations.
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About the Florida mom–the driving into the ocean thing wasn’t completely out of the blue. Her sister was worried enough about her to call 911, the Florida mom checked herself into a hospital, and the police were concerned, but didn’t have quite enough to work with.
“She was trying to get help for her sister. Help for a woman who was distraught and uneven, having driven to Florida to get away from her husband. Who had gone, at her sister’s urging, to a hospital only to sign herself out earlier in the day. A woman who was “talking about Jesus and that there’s demons in my house,” her sister said on a 911 call. “I’m trying to control her,” the sister said, expressing worry about her sister’s three children. “… I’m trying to keep them safe.”
“At first, the plea appeared to pay off: Police caught up to the woman — later identified as Ebony Wilkerson — after she sped away from her sister’s Daytona Beach apartment. An officer questioned her as her three children sat in the Honda Odyssey’s backseat, smiling and seemingly calm. Wilkerson explained that she feared for her safety, worried that her estranged husband would harm them.
“According to a Daytona Beach Police report, the officer believed she might have a mental illness. Despite these concerns, the officer talked to a detective also at the scene and let her go on her way, concluding she couldn’t be held under a Florida law that allows for detention of people believed to be impaired by mental illness and who possibly pose a risk of harm.
Almost two hours later Tuesday, Wilkerson drove her black minivan — with the three kids still inside — into the surf of the Atlantic Ocean.”
http://edition.cnn.com/2014/03/08/justice/florida-mother-minivan-ocean/
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In the Lanza case, another dynamic seemed to be playing out (reading the interview, and always with the caveat that you can’t know what’s happening inside another family) — Adam Lanza’s behavior was becoming more extreme and the mother was following the pattern of trying to avoid all of Lanza’s triggers. The dad (and, dads in general) seem less willing to work with behaviors (both good and bad — because it’s always a balance how much time you are going to spend on accommodating versus altering any atypical behavior). The dad, who saw him less frequently, might have been in a position to see that the behaviors were becoming more extreme. It seems like both Adam & the mother isolated themselves to avoid the complete realization of the extreme behaviors.
I agree that the village can’t replace the parent (or some other adult who loves/cares deeply about the child or person needing care). But, one important thing that villages provide (especially ones that aren’t isolated or cult-like in and of themselves) is a reality check of where behavior fits on the spectrum of human behavior. It’s very easy for a parent to produce a specialized environment where the behavior doesn’t seem as out of place (an example being families that don’t realize that a child has speech delays because they’ve all worked to never make it necessary for the child to speak — say by responding to facial expressions, gestures, and anticipating needs).
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It’s also possible mother and son shared something along the lines of a genetic predisposition to prefer hermitism. She may have been increasingly isolated by her son’s peculiarities, but some of her decisions were odd. We will never know, as he took care to destroy the witness and the records.
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Right.
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There’s a funny/cute/slightly creepy post here where Katharine Beals discovers that her son has been impersonating her by text to fish for invitations in order to look at friends’ ceiling fans (his particular obsession).
http://oilf.blogspot.com/2014/03/autism-diaries-why-i-pretend-to-be-you.html
There’s a bj in the comments there–is that you, 11d bj?
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