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A child is now able to attend school in the same grade as his same-aged peers—without an aide or any special services; his academic skills are at grade level or above; he plays video games.
The above description equals “recovery from autism,” in the words of two parents I recently encountered. This “recovery” was attributed strictly to biomedical methods including various intravenous treatments, injections, detoxifying processes, and so forth. (Whether or not the child was receiving any educational services—if not ABA,perhaps speech therapy—-or occupational therapy to address sensory processing needs—or assistance with social skills, was not mentioned.) Many questions enter my mind on hearing of this as a definition of “recovery from autism,” and not only because I know families whose children have done every treatment in the DAN! protocol plus various other things; the child might have an aide in school and can do academic work at or above his or her grade level. In my interactions with the child, he is clearly still autistic as far as his use of language and his cognitive processing and video games do seem to be an activity that autistic children might readily be drawn to.
So I don’t know if “going to school without an aide and having academic skills at grade level or above” constitutes “recovery from autism.” My own does not meet those criteria: He is in a self-contained classroom in our public school district; the student to teacher ratio is 1:1 and he needs lots of speech and occupational therapy. But in some “skills of daily living,” I can see independence emerging, and in ways that anyone needs to make it in this world:
- Charlie holds onto a shopping basket or pushes a cart, choose groceries that he wants and as I direct him (with some prompting—-needed, still, as he usually chooses the same things, but my needs vary). (Then again, put anyone in an unfamiliar supermarket and who doesn’t go wandering blindly to find the paper towels?)
- Charlie is learning how to stop at the sidewalk and wait until told to proceed across a busy parking lot (and I am not holding onto his coat, though I still do this when we’re riding the subway in Manhattan).
- Charlie understands when I say “we don’t need that now” or “we already have that at home” (there’s no reason to buy a new bottle of ketchup every time we go to the store, especially when there’s a half-used bottle at home). And he does not get upset at this news.
- Charlie waits in line.
- Nobody turns their head to see a tall boy walking around the store helping his mother shop. (Why should they?)
I don’t feel I’m with a 6-year-old in the store; I feel like I’m with a 10-year-old kid, my son Charlie. He doesn’t understand the value of money yet but the three mop-harired boys we saw in a convenience store last night, all Charlie’s age or just a bit older and making a beeline for bottles of Gatorade and brightly covered bags of non-nutrient-containing snacks, were spending like there was no tomorrow.I’m not trying to claim that my son is in any way recovered from autism because he can do these simple tasks that, when he was 6, were nearly impossible: Grocery shopping was like competing in a decathlon, in which I had to keep Charlie from opening packages, mouthing fruit, or eating food we had not bought (and had no plans to buy). Grocery shopping is now a pleasant activity and one that offers plenty of learning opportunities, some as simple as me showing Charlie that one kind of relish is “SWEET relish” (which he likes) and the other is “INDIA relish” (which he likes a bit less).
Maybe Charlie will have a job in a store someday, stocking shelves or rounding up shopping carts (he’ll be plenty strong for this job and he is blasé about the cold and heat), or carrying boxes or cleaning. I like to think that our small, every efforts to engage him in activities that we all need to survive—feeding ourselves, clothing ourselves, attending to personal hygiene (Charlie is learning to wash his own face at school), getting and keeping a job, knowing to ask for help, and countless daily activities that I suspect my college students are still learning. As a parent, these are the skills I need to pass onto Charlie to take care of himself; his performance at school is just one out of the many things he needs to learn as he grows up. The New Zealand teenager, 18-year-old Owen Walker, who is alleged to be involved in a multi-million dollar crime ring, is described by his mother as “intelligent” and loving “computers from a young age” (and, too, perhaps has a similar liking for video games). Walker is a computer programmer and has Asperger’s syndrome. Notes a New Zealand new source:
The FBI suspect Walker is “AKILL” – the cyber figure who is the ringleader of a “botnet” which has infected a million computers with a virus which has resulted in an estimated $NZ26 million-plus of economic loss.He was alleged to have been part of an attack that crashed the computer server at the University of Pennsylvania.
Police released Walker after questioning and it is believed that they plan to interview him again after examining computers that had been seized.
The director of the company he used to work for believes that he “did not actively seek trouble or illegal activity.”
Who knows but one day, living in his own apartment (in a supported living setting, with some roommates and support staff) and holding onto a job (minimum wage maybe and not requiring him to have any letters after his name, but a job is a job) and having things to do outside of work (swimming, piano, running and exercising, spending time with people), but Charlie might declare he has, like my friend Rose’s son Ben, “cured himself“? Or at least learned enough by his own hard-won efforts to be a responsible, and a self-responsible one man. Maybe that will means it’s time for me to recover from being an “autism mom” and just be a plain old mother—just another mom.
But of one super-special son.
1253 days ago
[...] Recovery can be distracting. It can lead you to make “curing” a child of autism completely and of making her or him “typical” and “normal,” over and above seeking to help a child develop, learn and grow as much as she or he is able. It can lead you to focus on a single long-term wish of “recovery,” so that those smaller gains, while remarked upon, seem like small steps on the path toward a bigger something else,”recovery.” [...]
1305 days ago
[...] his public school classrooms here in New Jersey, where the emphasis is not at all about “recovering” or “treating” autism but, of course, on educating students to do as best as they [...]
1309 days ago
[...] (they do not have to be recovered, just improved)” are sought—–so “recovery” is not the thing, but rather [...]
1323 days ago
[...] listen. The “fight” with autism is over, and we accept and hope. We’ve let go of recovery and know that autism is lifelong. I no longer feel I have to deliver a [...]
1340 days ago
[...] on various treatments. We’ve known a few families who did Son-Rise and there was no “recovery,” and the families have moved on to other [...]
1347 days ago
[...] was thinking (we suspected) that Charlie was not going to be one of those kids who might “recover“and be [...]
I like the breakdown of what Charlie can do at the grocery store. I agree about going to an unfamiliar store. We have a new discount store next to Walgreens just down the street and last Sunday I took my kids there for the first time. It really caters to the Latino community, but the frozen and refrigerated sections have name brands we are used to and cheaper than regular grocery stores.
They go shopping at camp as well and I have a good pic of each one on their trips pushing cart and paying clerk.
1561 days ago
[...] older children of any diagnosis—an older child, able to understand more, do more, help us, try to be independent. For us, it was good to get an early diagnosis and start learning about [...]
WTG Michelle! I do the same thing, focus on the positives instead of the negatives…I do that with everything and I find I’m happier and more appreciative of what I DO have!!!!
My almost 13 yr old has the very common Aspie addiction to Nintendo. I agree that it has helped him socially where other obsessions may have hindered him. He, like many others, was not diagnosed until he was 11. Autism hadn’t even been mentioned before that! I feel so far behind the curve in treatment sometimes, for him and my 7 yr old son who also shows signs.
At the same time I marvel at what they are capable of doing. A friend of mine has a 16 yr old that was dx’d at 5 and has worked hard in therapy and treatments since. Yet my son “stands out” less than hers, possibly because we have focused so hard on what he is good at and not what he needs to do better.
Sure my boys can’t walk a straight line and aren’t the most fashion savvy, but they never forget the punch line of a joke, have amazing mathematical abilities, and can crack any computer code you put in front of them. That is what I consider defeating Autism.
Good to hear about your daughter. My son learns more every day, understands more, and offers more hope about how much an autistic child can learn and grow. Best wishes.
I have a 6yr old daughter that was diagnosed with autism at 20 months, we started a completley restricted diet asap and chelation at 3yrs 3months, along with many, many various interventions of so called “snake oil” treatments and all the traditional therapies. I now consider her recovered because as hard as I look she does not have any traits of autism. You can be delayed and have sensory issues and anxiety and auditory processing issues and not have autism, you either qualify or you don’t. One by one we have eliminated roadblocks to my dd typical development. Autism is a medical condition and for some, not permanent. We need to celebrate all our children’s success’, including the loss of a diagnosis, not disregard it as impossible (which totally invalidates all the effort and pain of part of your community) but look at it as the ray of hope it is. Full Recovery is Possible, dare to hope!
I met that criteria when I was first diagnosed autistic! (at 15). In fact, I first met that criteria when I was 10 and transferred from one school (where I had an aide who made things worse for me) to another school where I had no aide. I was certainly not ‘recovered’. I was a weird, silly, quirky kid, absolutely clueless about social things (I recognized more of the basics than most autistics, but I had no clue there were cliques in my school until I recognized the description in Queen Bees and Wannabees, despite being in a position – Target – where it is standard to openly recognize cliques), compulsively reading, intensely interested in world poverty, environmentalism and drug addiction (I was depressed and more interested in bad things as a result) and I had no desire to interact with other kids (I have a reduced need for interaction to begin with, and bullying pretty effectively killed what desire I had). I was, in fact, much more obviously autistic than I am now.
I think you are SO RIGHT about being left in the proverbial dust if one isn’t “triumphant or successful” (whatever that is). Unfortunately it isn’t just an attitude in the world of autism. It seems this is the attitude of society these days or at least mainstream media. As if everyone can be NUMBER ONE or everyone CAN win the race or make millions or on and on to the top. People that perpetuate this are dream peddlers seeking notoriety or money for themselves (in most cases). Most of us are every day people who make things WORK as best we can, no matter what position we cross the finish line…we cross it.
I saw your further comments on this on your site, Cliff—very thoughtful. My concern about the word “recovery” in regard to autism is that it has acquired a much more specific meaning than the subtleties pointed out here—-it tends to mean that a parent utilizes some potentially “aggressive” and “intrusive” methods/treatments to “rip the autism” (if I may put it that way) out of a child. It also seems that, in narratives of recovery from autism may present a story of one family or individual’s “triumph,” but those have not gained such “success” are rather left behind in the proverbial dust, because they did not do the diet exactly right, didn’t have just the right therapists, didn’t follow just the right protocol—-the list can go on.
The features of autism, however, are extremely present, though perhaps not as visible. I wrote a little on this, in reference to this post, on my little site, but I’ll repeat it here.
Autism is an extensive condition that affects the entire life of the person, and not in simple communication terms. Its modification on perception, thought, and feeling is not something that is simply shown in the visible behaviors. I could largely pass as non-autistic at this point in life, and yet I am no less autistic then when I was when I was four.
Frankly, it’s just not something you can recover from. It’s like talking about recovery from being a compassionate person, and it really doesn’t make any sense. In this regard, the diagnostic process typically used to describe people really is incorrect, and it feeds into this false notion of recovery.
I will never recover from who I am. And I will never try, though that pressure has existed before. I will further say, at the danger of being pointedly contradictory to some, that no autistic person can ever recover from autism, short of complete brain morphing (and whether that constitutes or something else is a different issue).
Cliff
It’s a lot more productive to simply focus on needed skills – I found focusing on “recovery” to be exhausting and anxiety provoking. But I don’t think recovery itself is to be denigrated. When the features of autism are no longer present, what else do you call it?
My son’s diagnosis was changed from PDD to language learning disabled at seven; however, his language and social skills still required enormous amounts of intervention, and were somewhat typical of a child with autism. So diagnosis? Gone. Recovered? No. Really, nothing changed. It marked a place where we no longer needed to work on certain things, but he still needed the same level of intervention.
Now he gets minor help for reading comprehension issues; however, his issues are fairly typical of what a number of mild LD kids in his school deal with. So recovered? Maybe. Indistinguishable? No.
It excites me that my nine-year-old son doesn’t run through the store wanting a million things or asking for candy or unhealthy snacks. I find this one of the GREAT pluses of being an “autism mom” too. He also doesn’t ask for every toy visable every two minutes like his brother. In many ways I find my autistic son more mature, whether it is a perception or reality…I like it!
I have been lurking on your blog for a few weeks now, but I wanted to de-lurk to tell you how much this post touched me. My PDD-NOS daughter is 4, and we spend a lot of time smiling about how “smart” she is (perhaps as a break from focusing on all the areas she needs so much help in) but this post was such an important reminder that it is as much if not more important to help her learn the skills she will need to survive as an adult in the world.
I would day that I totally agree with Kristina.
I think it comes back to the question of what is your long-term goal. My son has made much progress and I am optimistic that he will continue to so do. But when I refer to progress, I refer to his progression toward independence, better interpersonal relationships and more self-sufficiency. I do not refer to progress in terms of him progressing toward being neurotypical. My goal is for my son to have a great life but I don’t consider whether or not he has a diagnosis to be relevent to his progress.