Getting Better All the Time
September 25, 2007 by Kristina Chew, PhD
Filed under Education, Parenting, Sensory, Stereotypes, Treatment
So far this week (and it is only Tuesday) we’ve heard about how, after her son received an “earth-shattering new diagnosis” of autism, one mother “was secretly living a private hell” (via ABC News), and also that there is a tsunami of autism. Such references suggest not only that autism is nothing good, but also that to have autism—-and to live with an autistic person—is to live a life that is bad and just gets worse, until (to carry out the “tsunami” metaphor”) one is (also metaphorically) drowning.
Life with autism and life raising an autistic child are both not the proverbial piece of cake (from what friends with children of all ages and abilities and possible college prospects tell me, raising any child has numerous challenges). But there is much more hope than references to “hell” and tidal waves suggest, and a study published in the September Journal of Autism and Developmental Disorders suggests that, over the course of their lives, autistic persons grow and change.
More than 400 autistic adolescents and adults in Massachusetts and Wisconsin were part of the study. Notes a press release from Washington University in St. Louis:
“On average, people are getting better,” says Paul T. Shattuck, assistant professor at the George Warren Brown School of Social Work at Washington University in St. Louis, who worked on the study as a graduate student and post-doctoral fellow at the University of Wisconsin-Madison’s Waisman Center and is the first author of the paper. “It is a hopeful finding, but the fact remains that those with severe autism will depend on others for their everyday needs and care for the rest of their lives.”
……
Every 18 months, parents in the study are interviewed in depth to assess changes in their child’s symptoms and behaviors.The new paper reports on how behavior in 241 adolescents and adults, initially aged 10 to 52 years, changed over a five-year period. Although symptoms for many in the study remained stable, a significant proportion exhibited improvements in symptoms and maladaptive behaviors.
“For all major symptoms, the percentage of people who improved was always greater than the percentage who worsened,” Shattuck says. “If there was significant symptom change over time, it was always in the direction of improvement, though there was always a group in the middle that showed no change. The mean never went down.”
Like most people, individuals with developmental disabilities such as autism continue to grow and change over time, Shattuck explains: “Their development is not frozen in time and forever the same. That’s just not the case.”
The paper reported on changes in broad categories of typical autistic symptoms: impaired verbal and nonverbal communication, impaired social interaction, and repetitive behaviors. Within those broad categories, changes across 32 specific symptoms ranging from reciprocal conversation and interest in people to compulsions and rituals — were measured. Also examined were broader maladaptive behaviors such as aggression and self-injury that are not specific to autism. Across all categories, the proportion of study participants who improved was larger than the proportion that worsened.
The study also found that 69 percent of the participants were classified as mentally retarded.
Many often proclaim that it is necessary to hurry, hurry, hurry, and do as many interventions as possible for a child before she or he turns five years old, as if some “window of time” is only open for so long. In my experience as Charlie’s mother, this kind of thinking can be dangerous: Not only can it lead a parent to search out treatments of dubious medical value (and with potentially harmful results, and with a hefty price tag), but it can put too much pressure on a child to change and be a certain way (”normal”)—and what happens if the child, for all those harried efforts, still struggles, even has challenging behaviors, is not mainstreamed, can only talk a bit?
Life with Charlie has only gotten better as he has gotten older. He understands more, helps out around the house, attends to his own needs (well, I do have to stand in the bathroom while he brushes his teeth). He may not be able to live independently and may not have an easy time finding a job, any job; he most likely will not drive a car, and I am not at all sure if he will ever read a book cover to cover. Life with Charlie shows me why being able to do those things is hardly the most important thing in the world, even as it makes me appreciate every little victory—each new word, even a syllable—more.
As 14-year-old Luke Jackson says, “‘different is cool.’” Colin Brusnahan, who has autism, ran the 5,000 meters in 23:49. Schools for mainstream students can learn a thing or two from schools for special needs children, from the benefits of attending to children’s sensory needs and “rebound therapy.” There’s a lot to be learned from life with autism: It may not be heaven on earth, but I’m not looking to live in heaven. I’m glad to be here with my feet on the ground and in the wet sand, watching Charlie and Jim swimming close to shore.
Jeff Stimpson
Jill Cornfield
The earlier the better with treatments I think. I do want to say hat I think it is never too late. If five were the magic number we would have been in big trouble since by the time we got her diagnosed and help and had a doctor believe that it was more than “quirky” behavior she was past her 5th birthday. At 5 she had no reciprical conversation was self mutilating and unable to stay on task at all. now at 7 she can carry on conversation with minimal prompts she is not self mutilating at this point and is actually being mainstreamed in school for math the one subject she grade level. We do a dairy free diet because it does effect her behavior. I do believe though that the majority of her progress is because of the amazing therapists and schools staff that have helped her and as always her hard work and determination. I would like parents to have hope as well but not because they recieved a cure or help by a certain magical age but because each of these kids are a joy the way they are and the progress that they can make within the spectrum which is amazingly large.
With all due respect to Dr. Shattuck (who I’m not sure was quoted properly) this sounds like the work of Captain Obvious. I can probably go and find a dozen PubMed-indexed studies showing how autistics develop. Some even give various formulas for different skills, separating out “types of autistics” and such. Only quackery-peddlers claim that autistics don’t develop unless they do foot detox or some other garbage.
Kristina, forgive me, but I notice a sort of relentless “this can be fine, this can be a blessing” melody in your posts that –while it may be entirely fitting for you and yours — may simply not reflect the experience of some others.
I harp on this only because it’s the only similar experience I have, but my experience of caring for a mentally ill adult was not a blessing. It was a harrowing, stripping, depleting time, and it’s had no happy ending so far. While I’m no longer involved in his care, I’ll be at the mercy of his illness for at least the next decade and a half; our daughter lives with it for life. Not only wouldn’t I wish it on anyone, but I’d advise anyone contemplating such a relationship to run, run far away, especially before there were children.
It’s a reaction that occasionally shocks and offends, particularly when I get to the part of the story where I asked him to go because I could no longer take care of him. I can only imagine the reaction parents get when they express similar feelings about their children, but I can certainly believe that they’re genuine. I watched enough of it in my mother’s family.
In other words — I don’t think it’s helpful to condemn, however implicitly, parents who may describe their experience in terms that pain you personally. Or to attempt to balance “hell” with ” “hope”. Both, apparently, are real.
As far as it goes, do I think this is a wonderful condition worth celebrating? The idea makes me uncomfortable. I recently read Kamran Nazeer’s commendably nuanced book; it’s all disconcertingly familiar, right down to the bio at the back, which gave me a laugh (K.N. trained for this, and decided not to use his excellent qualifications, then trained for that, and decided not to, then someone picked him up). I don’t know what of myself I might give up not to be this way, and I don’t know the quality of life I might have had without it. I like myself, I like the sense of being me, and that comfortable insularity. But there is nothing very nice about being 40, responsible for a child, and managing with that sort of clumsiness. Nothing very nice about an itinerant-genteel way of getting by, apart from the free time in the middle of the day (which really is nice). I couldn’t do what you do, for instance. Regardless of talent and cv, I couldn’t survive as part of a department, meeting committee expectations, putting in service hours, serving for years on end as educator and public face of the department, profession, institution. There is a genuine sense of waste there, and a genuine insecurity. Even up here at what I imagine is near the tippy top of the spectrum (though I think something’s fatally wrong with that spectrum idea).
Others seem to have found valuable things in how I am, which is nice, and yet not central. And Emran is right about the protectiveness it engenders in others, though I suspect that if I could see it from their POV I’d be ashamed. Happily, I don’t, and it’s merely convenient. But is this all something to celebrate…I rather doubt it. There’s something to be said for loving the one you’re with, sure. But I wouldn’t turn it into more than that.
I’ve many deficits, many.
Having recently lived with two mentally ill adults, I know that it is not easy, but an attitude of hopelessness can make things very difficult. I prefer hope.
I have met Mr. Nazeer and had a very fine conversation with him, and learned much from it, as I do from your comments, and from those of all those who write here.
Joseph, the study does seem to proclaim the obvious, but perhaps not if one thinks that a non-verbal child has the “mind of a toddler in a much older body”…….
Life with autism does seem like hell sometimes. Especially in the beginning when you get tour diagnosis. In my experience, this period resulted in a nerve breakdown which, thank God, didn’t last long. Of course, you have to love somebody to be able to cope with it, but one just can’t stop loving him/herself, as well. And this leads to unwillingness to deal with a new, unexpected and undoutfully hard situation. You never stop hoping though, that things will get better and that’s what gives you the strength and courage to go on. It will never be like heaven on earth but, on the way, you learn to appreciate small things, insignificant to others, but extremely significant to you. I am only able to speak on my behalf and based on my own experience and I realize that what stands for me and my boy most probably will not be the same with other peoples’ experience, especially as autism spectrum is very broad and two individuals, both with autism disorders can be totally different. As it was said, somes’ condition will never improve or even deteriorate. The fact is that you don’t know which category you belong to, so you have to fight your battle and hope for the best.
As for the intervention thing, not all form of therapies and intervention are available to everyone. We struggle financially to be able to offer our son a small portion of the therapies that children in the US receive much easily. I don’t mind having to give up many things that used to add pleasure to my life, but there comes a time when you just don’t have enough money. And there goes your hope…
athina, I can sympathize with your last point indeed—-does the school system or other public agency provide any services?
All we managed to get so far is one hour of speech therapy and one hour of occupational therapy per week! We have to pay ourselves for any additional therapy or any extra hours. I also have to mention that these therapies are extremely expensive in Greece and although both my husband and I are University graduates with MSc’s and have steady jobs, our income is just not enough for all this. We manage somehow, but I wonder if it is a crime to have an autistic child in Greece and we are punished for that.
Thanks for asking Kristina!
I personally am very celebratory of my differences, and tend to appreciate them . For me, my autism has given me a whole lot more than the odd quirk which is cool, which is then drowned out by a whole wave of negativity. Really, it’s given me a whole perspective of life and of being, and I feel I have a form of honesty and directness with my universe that the far majority of people don’t have. I feel very strongly for that connection. I should note that my place on the spectrum is very questionable (I’ve had both low-functioning, non-spectrum, and high-functioning attached to me, at various times, currently considered high-functioning).
Are there things I might wish I could do? Sometimes. Amy notes being part of an academic department, and while I’m not sure if I could do that (not entirely sure what it entails, to be completely honest), I certainly wouldn’t give it up. Even if it meant being completely isolated, I would prefer to keep me the way I am. Would I like being isolated? Not really. But it’s the easy choice over becoming something other than me. And I could care less about the perspective of others in regards to my personality, because, really, I probably matter as little to them as they matter to me.
On the other hand, it’s not easy being a minority regardless of functional differences, and when there are expectations to function in certain ways, there will be issues to deal with. That’s not so much the individual as the world he or she lives in, including cultural resources and tendencies.
And I’m not trying to undermine that difficulty. I understand that the task of getting resources for the kind of teaching autistics are suited for is a harrowing task, and that the process is tough on the individual. But I don’t think any of that really has something to do with the person. And I think that the differences of the person, in terms of the differences themselves, are valuable, as any difference is.
Cliff
Ok, I should clarify “any difference” to mean “any difference which isn’t explicitly harmful to those around the individual”, and I don’t think that autism falls into that category.
Cliff
I was lucky; I didn’t want the professor job (or this job or that job), and it was decades before I noticed that there hadn’t actually been a choice, despite all the training and encouragement and early promise.
In each instance of encouragement and/or early promise, nice mid-career people were giving me a hand up, welcoming me aboard, and meanwhile I was completely oblivious. No idea what “aboard” meant, no interest in what it might mean. I saw only the job at hand. I’ve rejected jobs, literary representation, publication, valuable mentorship, and spots in nice academic programs without understanding that people were genuinely offering. They never said, “I’d like to offer you a _____. Will you do ______?” People had to point it out later (often in annoyance). I’d have turned down a scholarship and a fellowship, too, if the people offering hadn’t recognized my idiocy and gotten more explicit.
It’s funny until you see what you’ve done with the time instead. Then again, it’s unlikely I’d have been able to keep playing ball, even if I did catch once. In the serious jobs I’ve gotten, I’ve routinely misread cues.
The waste of time and gifts — and I don’t mean to be offensive to people who haven’t got problems this nice — is difficult to get across, because things look reasonable enough, successful enough, from the outside, if a bit patchy and bohemian sometimes. Take Mian. Civil servant, nice degrees, successful pop book, has the odd publication in a good magazine. But obviously he’s capable of far more. It’s just that the chance to do “far more” requires considerably better social tuning; and perhaps I’m wrong, perhaps the work isn’t so good without that social tuning. But I bet everything he turns out is much better than it has to be, given the level at which he’s working. His story about Craig is another iteration. And.
He writes about that consciousness of being hired because you have a useful talent, but when it comes down to it, I don’t think we can see why we’ve been hired. Eventually what they want will change, we will get no memo and carry on doing what we do best, and bip, there goes the job. Or that’s how it’ll look to us. To them, it’ll look like they sweated blood and made sacrifices trying to get us to be flexible and pick up the new game, and we were unbelievably obstinate and unfriendly for no clear reason at all. Personally, I have no idea, at any time, whether my regular clients love what I’m doing or are searching for replacements. Which means I’m always ridiculously grateful when they offer more work. When they say, “You’re crucial to our business, please let us know if someone else is making offers,” I have no idea whether or not they mean it, or what they mean by “crucial” (should I ask for more money?), or if it means they want to offer me something. I’m left feeling deeply uneasy.
And for all Emran’s talk about the value of argumentative skills, this is only an hypothesis. That example he gave of Craig wowing the aide? I’d bet good money the aide wasn’t wowed by the quality of Craig’s argument. I bet her mental ticker went more like this: “OMG, this Professional Speechwriter sounds great and super-smart, and he works wicked fast.”
That’s the thing, Kristina — we don’t know how we’re useful and often don’t care. Total morons in that regard, even when we’re doing relatively well. Which means that “finding jobs for autistic people” isn’t really the whole story — what’s needed is what already exists, only more of it, or in a more focused sense. People who are very good at understanding how to exploit other people’s talents. Who will spot something in another person, say, “I can use that,” or “I know who can use that,” and then — privately, or whatever, it doesn’t matter — make it clear to the prospective employer that the person is oblivious and a bit of a loon, but nice and housebroken, and is crackerjack at _____. The Randall story also caught it nicely.
Amy,
Was this “mentally ill adult” Autistic Amy? Or was he indeed a “mentally ill adult” with some other condition(s)? I have not read anything on this blog to suggest that anything other Autism is a factor yet. The positive attitude being portrayed is not claimed (so far as I have seen) to apply to any other person, so for KC and co, it is good and true, in my opinion.
If you are of the feeling that Autism is a mental illness then please realize that use of the mental illness phraseology is going to get some heated feedback, like this response.
I happen to be an Asperger (Pervasive Developmental Disorder/Neurological Condition) ‘patient’ who also suffers from Major Depressive Disorder, a true mental illness, until they find out (if they ever do) that this is also a neurological condition.
I daresay there are others in the support community that would also find your candor disturbing.
Patrick, there’s no need to jump to conclusions. No, my ex is not autistic. He is mentally ill. Ill in the sense that the condition is crippling and deeply unpleasant, not in the sense that he expects the condition to be temporary. From a caregiver’s perspective, though, the issues can be very much the same. The surprises and emergencies are chronic, and they’re things you couldn’t make up; there is always a hitch of fear wrt what might happen next, what falling masonry will you have to catch in the midst of making breakfast. The care coordination is a job in itself. Things have to be set up in a very particular way, and simple things like going to the store take on Cumberland Gap proportions. The expense can be wild. Other people aren’t likely to understand the problems or your limits. Your world shrinks markedly, you find yourself in a world of services and groups, ambitions dwindle, the person you’re caring for may not be able to see the problems, and you’re cast into a bizarre world in which communication is extraordinarily tenuous and difficult, but you must keep trying, even when you suspect you’re mostly talking to yourself. If you don’t have adequate support from local family, you can easily find yourself overwhelmed, and that the care needs leave no room for your own.
I’m glad Kristina finds joy in her life and her son. What I note, though, is a sense of attempting to combat attitude with attitude, both personally and in public perception. I don’t think it’s necessary. For some people, raising autistic children appears genuinely to be a hellish experience, so that should be part of the story too.
I’m glad I do, too, with all the difficulties!