What’s Going to Happen After I’m Gone?
July 19, 2008 by Kristina Chew, PhD
Filed under Health
Writer Ann Bauer’s adult son is autistic and, in an article in today’s Washington Post, she writes about the question that are always just under the surface of my conscious thoughts:
What happens to Charlie after Jim and I are not here?
Bauer, the author of the novel A World Ride Up the Cupboards, has described a terrifying episode in her family’s life, when her son (at 17) was misdiagnosed as psychotic and had autistic catatonia. She’s also written about the struggle to find and help him keep a job, and how, too often, she’s gotten the message that Autistics Need Not Apply. But the struggles are also because of the world we live in, a world that talks about “raising awareness” but has yet to provide sufficient (or even adequate) and appropriate services not only for autistic children of school age, but for autistic adults. Writes Bauer:
My son is flailing in a system that doesn’t know how to deal with him. I admit I’m of little help. He doesn’t look different from other 20-year-olds, and he happens to be of normal intelligence. But socially, he is as lost as he was at age 4, when he withdrew, quit speaking and stared for hours at his own hand. Over the past year, he’s been placed in a series of group homes for people with mental retardation or psychosis. None has been right.
His senses are overly acute, which means he experiences the world largely as pain. Noises, colors, smells — they’re all too vivid. He is prone to sleeping his days away rather than working in the yard. He likes dark rooms and movies and has the urge to date but cannot work up the nerve to speak to girls, much less ask one out.
Bauer describes a family down the street—60-ish father, adult son with Down Syndrome—who, as she says, she envies, because they’ve “figured out a cohesive, workable system of support.” She writes:
…..while I wouldn’t trade [my son] — the person to whom I gave birth — for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we’re flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance.
Last year, New York Times ran an article about prenatal testing—about 90 percent of women who learn that they will have a Down syndrome child have chosen abortion—and the “dwindling” population of those with Down Syndrome. Parents of children with Down Syndrome are advocating to get a positive message out there about their children and life with them. As Bauer writes in today’s Washington Post, it’s more than possible to create a good life for an adult child with disabilities and it’s more than worth it. In the autism community, even as debate “splinters” (as Bauer writes) over “philosophical issues—-”cure and acceptance“—it’s the concrete issues of where our kids will live, how will they spend their days, who will care for them, that cause the sleepless nights and are, to some extent, behind wishes for “recovering” a child, as if that would ensure that a child would be able to take care of him or herself.
It’s not been easy for Charlie for me to be gone for two nights (though I’ll be back in New Jersey in less than 24 hours). I went because I feel he’s ready to handle it. Jim’s taking Charlie to the beach this afternoon and I’m grateful as ever for technology—the basic cell phone—-so we can talk about any “situations” that ensue. Charlie now has the right supports around him, a teacher who knew why he was crying and gave him words to describe it, a speech therapist who rearranged her schedule so she could come on Friday.
It’s taken us years to get the right school placement for Charlie. One of the most heartening things about his school is that more of the aides and teachers I’ve met have talked about wanting (yes, wanting) to work with older autistic kids, with teenagers and adults. With the right supports, understanding, and the belief that they can do it, our disabled children who will (all too soon; sigh; onward) be disabled adults can go very very far. Very.
Yep a great article in the WSJ today and I had read it earlier. I got the book today, The Boy in the Window and it sure is a big book. Good luck with your blog her session.
Kristina, I think parents’ fears about “what’s going to happen when I’m gone” are huge, and justified.
I think it drives a great deal of what happens in the autism community — but often in the wrong direction.
We spend way too much time arguing about causes and chasing after “cures” and tearing each other down, when we should be uniting to make sure that beneficial living situations with the right kinds of support are available for our kids as they grow into adulthood, and that they’re equipped with the best skills they can develop for effectively communicating and getting constructive action regarding their needs, wishes, and sources of distress.
There’s a wide range of what is necessary, for a wide range of individual situations and outcomes.
There’s also a tremendous amount of what’s *wrong* with the options presently available, that needs to be fixed.
We need to be listening to and working with adult self-advocates who are *living* with those problems. It’s not only wrong, it’s poor strategy to claim that the adult self-advocates have nothing to say that is relevant to our own family situations — because sooner or later, our kids will be faced with the same problematic options. Don’t wait until your children age into adulthood to come to this realization. Connect with, and get on the same side as the self-advocates regarding adult-living issues — and about helping our kids develop the capacity to effectively communicate and get constructive action regarding their needs and wishes and sources of distress — sooner rather than later.
That’s what we should be investing energy into, instead of endless debates about causes and endless chases after “cures”.
Yes, yes, yes—-connect, first of all.
Phil Schwartz said:
“Don’t wait until your children age into adulthood to come to this realization. Connect with, and get on the same side as the self-advocates regarding adult-living issues”
Mr Schwartz most parents are all too aware of the adult realities that face their autistic children when they are gone. Neither you, nor Ms Chew have discovered this reality. See the Chicago Sun-Times “Ultimate Autism Reality – Who Will Care For My Autistic Son When I Am Dead?”
http://www.suntimes.com/news/metro/blogentries/index.html?bbPostId=CzDMaRud1QrjpBDjpgmuOeQ59Cz9BpOMRZSZgwBB506ZBLS8bS&bbParentWidgetId=B8wu4iZ7dr873Su
You insist that parents make false and unnecessary choices when you argue that they should not seek cures and treatments. Some parents seek cures, treatments, education, recreational care, residential care, occupational opportunities and a host of other means of helping their children.
When you lecture parents to get on the same side as the self-advocates regarding adult-living issues you are telling them to agree with the articulate high functioning autistics and persons with Aspergers. You are telling them, yet again, to assume that the high functioning persons face the same realities as the persons with severe low functioning autistic disorder. They do not and they do not speak for my son amongst others.
My son is 12 and he is severely autistic. He will not be living an independent life when I am dead. I faced that reality long ago and I am working hard to make changes in the real world to address those realities. Just as I worked hard to ensure that autistic children in New Brunswick received evidence based early intervention from trained service providers, autism trained Teacher Aides and Resource Teachers in our schools, and tertiary care health services for severely autistic children who injure themselves seriously.
Ms Chew is free to place her child’s future well being in the hands of autistic self advocates. Perhaps her son is doing so well that his interests will align with theirs. But for many that will not be true and the interests of the self advocates will not be their interests. Whether your ideology recognizes these facts or not is immaterial. Caring parents will look after their children to the best of their ability and will not “connect” their children to strangers with different realities, interests and agendas.
@Harold L. Doherty,
Glad to know we’re in it all together.
@Doherty, et al…
You are reading this as “black and white” when it is not, and that is not the reading Mr. Schwarz was intending. He was simply indicating that we spend so much energy on “cures” and the ubiquitous vaccine debates that we are not dealing with the “here and now” of autism.
That parents with a diagnosis of Down Syndrome are selecting to terminate does worry someone like myself. It means that parents might someday terminate people like me.
I am often non-verbal. My wife would probably argue (as many others might) that living independently is a stretch for me. It certainly will always help to have reminders of what I should be doing and when.
A simple test for genes can lead to “false positives” or mild cases being eliminated. That’s a lousy thought and a real fear.
What concerns me about the Bauer article is the assumptions she makes about the family down the street. She hasn’t met them so she doesn’t know if living at home is what everyone involved wants–perhaps that young man has been on a waiting list for years for a supported living arrangment, perhaps his family spent years battling their school district for services, perhaps they gave up on SSI or DDD services because after all the redtape and paperwork the services weren’t worth the extra work…
I am concerned that there is this misbelief that it is only difficult to get services if your child is on the spectrum… trust me it is difficult ALL over and we should be working TOGETHER to improve services and supports for ALL children and adults with disabilities regardless of diagnosis, not pointing fingers that we believe that the family down the street has it easier.
As usual, Harold Doherty arrogates to himself standing he in no way has, to tell other people falsehoods about what I say and mean.
He does this with others he regards as “opposition”, too. With predictable regularity.
He only damages his own credibility by doing so.
Does anyone have perspective or information on the accuracy of this story?
Having lived in Switzerland, my perspective is that baseline social services and supports are better coordinated than here, but I don’t know the quality in re: specialized services or overall disability rights record.
In Switzerland, An Easier Path For The Disabled
Morning Edition
7/31/08
@Maureen, I had the same puzzlement about the assumptions of the other family, and questions about how they’d gotten to that point—–surely we need to band together as we share more than we sometimes feel.
@Regan, The first thing that comes to my mind is the sheer size difference of Switzerland to the US—i think it’s been easier in some ways for us to figure out things in New Jersey because it’s a relatively small state, vs. California (not that it’s not possible). And maybe we’ll be in California someday and have to negotiate such a huge state and state government and its agencies.
A previous story about Switzerland’s heath care system as a potential model for the US’s.
Some information on health care in Switzerland from the Organisation for Economic Co-operation and Development.
Kristina,
Sorry about taking so long to read the link, but my thoughts is that it does sum up our experience with the Swiss health system–granted that I still have questions as to what is encompassed in specific content of intervention and supports for those with autism and related disabilities.
Regardless, there was an interesting quote in the article that you pointed me to. From discussions that I had with some Swiss about the social support system, I think that it may be a fair representation of the mindset, or at least parallels that of those we talked to.
“Worth The Cost
“Yet Rappaz looks puzzled when asked about people in the United States who say that it would be intrusive to mandate health insurance.
“I’m not sure that I get you,” she says, cocking her head.
When the question is put another way, she laughs. “Oh, I see. That’s really an American question. You are so used to having this individualistic way of thinking, and that’s why you don’t have these social [safety] nets. You still have this pioneer mentality where everyone has to take care of themselves.”
That’s not how people in Switzerland think about it, she says. That pioneer mentality, “is good for people who have no problems, but there are a bunch of people who … need a social net.
“I’m really happy to give part of my salary to a solidarity system,” she says.”
This story was posted in the Schafer newsletter I thought the concept was interesting but don’t have knowledge of how well the model and these communities work in real day-to-day–does anyone have first hand knowledge about L’Arche?
Farm cultivates a sense of community
Seattle, The News Tribune
L’Arche International”
Just FYI.