Thoughts on Recovery from Autism While Grocery Shopping
December 2, 2007 by Kristina Chew, PhD
Filed under Adulthood, Asperger's Syndrome, Charlisms, College, Crime, Family, Intelligence, Living Arrangements, Parenting, Work
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.
Jeff Stimpson
Jill Cornfield
I love reading about all the things Charlie can do now! This is probably because a lot of what he used to do is so much like what my twins do right now. One twin mouths things, and the other tries to fit things in his nostrils–never a dull moment.
I also enjoyed hearing about his swim time with the girls. Go, Charlie!
“…small, everyday efforts to engage him in activities that we all need to survive”…so true. These are the pieces of life, the skills our children need to learn so that when they become adults, they can function in a non-disabled adult world. I continually hope that this world will be more accepting of them than it is now.
1 - 5 are areas that we’re still working on, the decathlon stage! and I certainly agree with your version of ‘cure’ but you’re always good at defining your terms.
Cheers
We’re working on being a team of 3 passing on the baton among us…..
I think it’s a shame that if you feel happy, and can do things on your own reasonably well (are fairly independent), to think of yourself or declare your self as ‘recovered from autism’. It means that autism is seen as the source of everything that was not good in your life, before, a wholly negative thing. I’m living on my own (with some help, especially in the paperwork and bill-paying department), have been pefectly fine and happy for years, am in a relationship, and will soon enough have a job (with some assistance), and did go through school without an aide (no one had aides back then over here, but my parents did put me in a very very small school: 9 children in my class). I don’t want to think of myself as not autistic anymore. Besides, it wouldn’t be true: it’s actually fairly obvious.
“Recovery” is just not in my lexicon for my son—-thanks for sharing about your experience. Life with him is not always easy—what it is, ultimately, is very good.
You and Charlie are an inspiration.
You know, I think it’s beautiful to be just a mom. Kids are a blessing. It took me a long time to figure that out.
Just two days ago, I read the amazing story of the recovered four year old. At two, he wasn’t speaking; at four he does. Imagine that! This is a true story.
Funny but that could have been Charlie…………..
The italicized quote sparks an interest in me. Nintendo in Japan has been researching the treatment of Memory loss (eg Alzheimer’s) with video games. I could say my son has recovered from autism due to Nintendo Therapy, well, almost recovered.
Full inclusion, at and above grade level, but he is concurrently enrolled in special ed so he has a “safety net”.
It’s funny but Nintendo has been a form of therapy for my son, too. Video games are his big passion (most Aspies have at least one) and it gives him a great tool to break the ice and talk to other kids. Most parents lament that video games take away from social activity; for us they increase his social activity with other kids.
As far as recovery goes, that is not my focus. For me the focus is on figuring out what he needs to be as successful as he can be in the classroom, in life and in relationships. Period. The diagnosis itself is nothing but a tool that we need to get his services. I have never attached any emotion to getting it and I attach no emotion to losing it.
Coming from the perspective of having met “recovered” by that definition (and, lord knows, my Mom, caring for my wellbeing, only let me play video games because UCLA said to allow me to), I really can’t say that meets recovery at all. Not that I believe “recovery” would ever be an appropriate term, but there’s another point here.
About preschool I was playing video games. I had an arranged friend (who I actually had been good friends with for a long time, and even now we’re on extremely good terms) who had a long-forgotten Sega Genesis, and I went all the way across town to where he lived many weekends of my childhood life to play with him. And, sure, it was a means of socializing, as it established strong shared ground.
But did it in any way indicate a recovery? If my elementary school experience had anything to say, I was autistic to the degree where mainstreaming was extremely stressful. Socially, I was very different, though considered very intelligent (so I’m told in retrospect, much to my surprise; I thought, at the time, I was inferior intellectually to those around me).
Even now, however, when considering autism in my life, I’m still an autistic through and through, and some skill set isn’t going to change that. Not talking, not being able to participate in a classroom. And certainly not being able to jam the “X” button.
Cliff
I’m the father of a non-verbal, classically autistic 10 year old girl whose progress has been agonizingly slow.
Your article seems to be saying two things. First that biomedical interventions have not been responsible for the improvements seen. That I believe to be true. ABMD s a lot of snake oil.
You go on however to denigrate the progress made, focusing on the fact the child is still autistic. Instead why not celebrate the progress made?
Nearly everyone with a low-functioning child with a much delayed mental development would love to see their children get to the point where their children’s autism was manifested by a quirky personality.
Oh, and I don’t see my child as 2-year old. I see her a wonderful addition to the family.
I don’t think she’s denigrating the progress, just stating how it doesn’t qualify for a “recovery”. It’s one thing to say “this child has learned a lot, has made progress, and is doing well”, and whole other to say “this child has recovered from autism, is no longer autistic, and should not be recognized as such”. From my perspective, that’s good for the child more than anyone else, especially since it will put many things in perspective for him.
Cliff
mayfly, I certainly did not mean (as Cliff very kindly comments) to “denigrate the progress made” but to question the equating of such progress as “recovery from autism.” One is certainly cheered to hear of a child’s gaining skills, but to label such “recovery”—as if that is the end of the story about the child’s needs, of whatever sort—-seems a bit hasty, in my very humble understanding of things.
My son is 10, too, and his has been a long journey. Speech came slowly (though diagnosis early, at just around 2 years). Every academic skills has been a new mountain to climb; your description of your daughter fits my son, too. Hence I am cheered greatly by his accomplishing of basic every day skills, such as standing in a line and understanding the notion of “save some of this for later.” He has plenty of quirks; he does not (yet) have the most reliable ways to tell us about these, or about why he likes certain things (the relish, for one thing).
When I stopped wishing that he would one day do certain set things—going to school at grade level and without an aide—-things became so much better. It was as if I was placing hopes and wants on him that were not about him, but about some external standards. The best judge of what to do for Charlie is to follow Charlie’s lead.
Thank you for sharing about your daughter; always glad to “meet” someone with a child the same age as my lovely son.
Kristina,
A super-special son indeed.
Thanks for sharing your thoughts.
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.
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.
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!
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.
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
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.
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 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 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!
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.
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.
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!!!!
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.