Recovery Distracts
There’s a new study by Molly Helt et al. out about recovery from autism in the December Neuropsychology Review. Kev at Left Brain/Right Brain has an overview; here’s the abstract:
Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.
There’s discussion over the specifics of the study at Kev’s blog; I’d like to consider the ramifications of the whole notion of “recovery from autism” as it can affect parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
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.”
Further, the notion of “recovery from autism” suggests that autism is something to be recovered from; is a disease or illness. While some do prefer to view autism this way, such a view can be detrimental to an understanding of autism as a lifelong condition. And, it can be harmful not only to the perception of autism, but also simply to autistic persons themselves. Sure, you can’t catch autism, but the more that is heard about autism as “maddening” and devastating, debilitating, etc.,, etc., and the more that the “behavior problems” of autistic children are the main thing that is described, the more a seed is planted in people’s minds that doing away with autism, or at least “getting the autism out of one’s child,” is what has to be done. In the name of recovery, some have tried treatments (such as chelation, often of an “alternative” nature, that have no evidence beyond anecdotal reports to recommend them, and that have sometimes proven dangerous, if not fatal, to a child’s health.
The entire December issue of Neuropsychology Review is about autism, with the title of “Autism Spectrum Disorders: Complex, Controversial, and Confounding.” While the article on “Can Children with Autism Recover?” may get a great deal of attention, other studies to note are on the rising prevalence rate and the proliferation of theories; regression and autism; the “triad of impairments“—social interaction, communication, and flexible imaginative—used to diagnose autism; and bridging the gap between neuropsychological evaluations and educational planning.
I know there’s a lot of varying opinions about “recovery from autism.” When my son was first diagnosed, and in the wake of reading books like Catherine Maurice’s Let Me Hear Your Voice: A Family’s Triumph Over Autism, it seemed that we could not not try to “recover” Charlie. But then I started to realize that I was valuing “recovering” Charlie (whatever that meant) over cheering on, appreciating, celebrating the small gains Charlie made and, too, life with Charlie.
I hope I’m not so distracted anymore.
Tags: alternative medicine, asd, asperger, autism, autism blog developmental disabilities, catherine maurice, chelation, neuropsychology, recovery, regressionRelated Stories
POSTED IN: Diagnosis, Education, Health, Psychology, Treatment
20 opinions for Recovery Distracts
Jen
Dec 3, 2008 at 8:40 am
I’m with you.
ASDmomNC
Dec 3, 2008 at 8:42 am
BRAVO! Well said, Kristina.
I prefer to NOT miss my child’s entire existence and gifts while tilting at windmills. People ask me how I can be so happy and have such a positive attitude, and a lot of that I think is due to the fact that I am NOT on a quest to “cure” my child.
Beth
Dec 3, 2008 at 8:50 am
Hi,
I noticed the mention of “residual vulnerabilities” which affect “higher-order communication and attention.” Sounds like my son who has Asperger’s and ADHD. Also, the tics, depression and phobias. I’m not convinced that these children recovered as much as they were trained to supress the outward signs of autism (see reference to preventing interfering behaviors.) Only time will really tell if they have recovered.
abfh
Dec 3, 2008 at 9:44 am
Thank you. I was going to post a similar comment on Kev’s blog post, but I think you’ve said it better than I would have.
Linda
Dec 3, 2008 at 9:48 am
How does one “recover” from being who they are?
An insulting notion at best.
Your posts compiled are a book. The title is Autism Vox and the time is now. The populace deserves an antidote to the McCarthy version.
Laua
Dec 3, 2008 at 10:48 am
I do think quite a few of those that are trying to “fix” or “recover” their children from autism are parents who saw typically developing children for the first two to three years of life, only to “lose” them to an ASD. I understand, to a good degree, the idea of wanting to get a child back to a place where they were smiling, talking, interacting, playing typically with other children, etc. I think sometimes parents with children diagnosed with an ASD are comparing apples and oranges so to speak with diagnosis - those with children with an ASD from birth are appalled at the idea of “fixing” their child since their child was born with the disorder. Those with a child not seemingly born with the disorder, but acquired it following an illness or vaccination are appalled at the idea of not trying to recover their child. Both make sense to me, and for either parent to try to speak to the other’s experience can be a little frustrating I think for both. I fully agree with you about not being distracted in parenting however. Our jobs are to raise happy, healthy kids that are confident and capable in whatever they choose to do in life, to whatever extent they are capable.
Emily
Dec 3, 2008 at 11:48 am
What Beth said. I’ve often suspected that a higher level of intelligence and early behavioral therapy focused just as these authors describe can help ameliorate some of the autistic traits that even an autistic person might find distracting, but there’s no question in my mind that even with those traits “learned” away or “modulated” in a situation-specific fashion that a person who is autistic–whatever it is we define as that–stays that way their whole lives. Not to put too find a point on it, but I’m STILL learning social information that I’m pretty sure most people learn by the time they’re 10. And when I’m alone, I let out behaviors that I struggle sometimes to suppress when I’m out ‘n’ about.
I don’t think there’s one thing wrong with working with a child–autistic or not–to foster them to their fullest potential. That means FOSTERING and working to POTENTIAL, not CURING them.
C
Dec 3, 2008 at 11:56 am
Hi Kristina,
Two quick points:
1) It is possible that some children considered “recovered” may have been misdiagnosed as autistic.
2) I suspect that some children, like mine, through therapy and growing up experience a lessoning of the limitations associated with autism. Make no mistake, K is still autistic (at least I think she is… hm…) but is functioning at a level that is difficult to distinguish from typical children.
Eleanor
Dec 3, 2008 at 12:29 pm
Thanks for posting this. I know Molly Helt’s sister, and this prompted me to get in touch with her and update her about my son!
Plus, it is really interesting. My spin on this is that this is not really about “recovery,” but about the adaptabiliy of some people with an ASD diagnosis to find ways to compensate and to mask some of their outward symptoms.
Mary (MPJ)
Dec 3, 2008 at 12:33 pm
Like Beth, the mention of those “residual vulnerabilities” makes me think that the “recovered” children have been taught to mask some of the more visible signs of neurological difference. It makes me think of the days when teachers would tie left hands behind children’s back to force them to use the right. They could certainly be taught to do things right handed, but that didn’t change the underlying neurology.
AnneC
Dec 3, 2008 at 12:53 pm
The main thing that stood out to me in that study description was the mention of “tics, depression, and phobias” in supposedly “recovered” autistics. IMO, that sounds like the response of someone who has been through so much “normalization” that they are possibly suppressing autistic mannerisms and tendencies out of fear or shame.
My experience has been that when I try to “act normal”, people tend to read me as anxious and even “stiff”.
ASDmomNC
Dec 3, 2008 at 1:03 pm
AnneC and MPJ hit it on the head. I think that children who are paraded as “recovered” have simply learned how to “pass” as NT in our NT society. John Elder Robison touches on this in his book Look Me In The Eye. He talks about how his mind still works the same way, but he has learned how to engage in behaviors and social graces that make him appear “not autistic.”
I like the analogy MPJ used about tying the left hand behind the child’s back and forcing them to write with the right hand.
David L.
Dec 3, 2008 at 1:53 pm
Yeah, what about when these “recovered” children become adults? Autism is still very much only about children in most people’s eyes. Will they be able to make relationships and be able to hold jobs? I bet that under stress, the so-called recovery will collapse.
Jeni Hill Ertmer
Dec 3, 2008 at 2:54 pm
Because, as you mentioned, autism is a life-long disorder, with respect to the use of the word “recovery” perhaps it would make more sense to speak of it as one does with alcoholics and alcoholism -which is a lifelong disease. Those who are alcoholic and attempting to live a life of sobriety speak of this as being “in recovery” which indicates it is a process that will continue as long as the individual lives. The same goes for those with diabetes -who must monitor their health all the time to maintain their sugar levels, etc. I realize alcoholism and diabetes also are physical issues, sometimes causing severe ramifications to the individual’s health, but I would also posit that not continuing with whatever needs the autistic individual may have, throughout the lifetime, could bring about mental health, possibly even physical health issues too then, could it not?
I’m just wondering if putting that word into a slightly different context might curb some of the animosities that seem to flare up about whether an individual diagnosed with autism can “recover” or not or would it be better to regard it as the person is “recovering” with the emphasis then being placed on the disorder being a constant.
AnneC
Dec 3, 2008 at 3:53 pm
Re. ASDmom’s point: I think this whole discussion sort of hinges on the problem of conceptualizing autism as a “set of dysfunctional behaviors”.
Autistic people may naturally tend toward certain behavioral phenotypes, but this does not mean that those phenotypes are somehow impervious to any external influence or that autistic people do not develop over time in ways that alter how we appear on the surface.
Autism really only makes sense when conceptualized as a cognitive style / neurological configuration. The surface stuff may be the most noticeable, but is also probably the most malleable and subject to influences like adaptation, education, and (unfortunately) intimidation, shame, and fear. Whereas the overall neurodevelopmental-structural tendency is likely to start off atypical and remain atypical throughout the person’s life.
And if that isn’t recognized — if a person is presumed to be internally functioning like a neurotypical when in fact they are autistic and using tremendous amounts of resources just to maintain the presentation they’ve been trained into in order to avoid constant ridicule, lectures, comments, etc. — then autistic adults will tend to be very vulnerable to the effects of stress, discrimination, denial of services for failure to fit a stereotype despite having very real difficulties in certain areas, etc.
mayfly
Dec 3, 2008 at 3:56 pm
I wonder how many of the commentators actually read the article which is a review of other papers (primarily longitudinal studies) and addresses with many of the concerns raised.
It does not deal with alternative medical treatments as qualifying papers in that area cannot be found.
Kristina Chew, PhD
Dec 3, 2008 at 4:23 pm
I would note that, given the interest in biomedical treatments of at least one of the authors (Martha Herbert—-consider the latest edition of Alternative Therapies), and given the fact that “recovery” has been said to have occurred in some children due to biomedical treatments, discussion of alternative medicine here isn’t surprising, as far as the discussion is about the notion of recovery more generally?
Paula
Dec 3, 2008 at 5:01 pm
Book! Book!
I am agreeing with Linda’s post above.
Naydi
Dec 4, 2008 at 4:47 am
When C was between 18 and 24 months he was practically nonverbal, would stack and line up everything, and made no eye contact. I have no doubt he would have been diagnosed with Autism had he been assessed at the time. However he was not assessed until he was 3 1/2 years old. His diagnosis was PDD-NOS, with the doctor saying that in a few years he would likely be more of an “aspie” (yes, she did use that term ;) ). His hand flapping is decreasing, his eye contact is increasing, and he has begun to ask those W questions. Perhaps when he’s a teen he will fall off of the DSM’s listed PDD’s. Perhaps not. But I wouldn’t call that recovery- I would call that a natural progression of his development that should be accepted at face value rather than analyzed. In science I think that is what they would call “remitting of symptoms”.
It doesn’t mean that someone is not on the Autistim Spectrum if they falls off of the DSM’s listed PDD’s. It just means that they no longer fit the check list. I also find it funny that whenever they evaluate a treatment, no matter how strange, they always find so many children who improve… but who is to say those children wouldn’t have improved anyway.
farmwifetwo
Dec 14, 2008 at 8:58 am
I would guess it depends on what your def’n of recovered is.
Technically my eldest at 9 has been “cured”, he doesn’t flap, spin, echo, he now speaks clearly. He’s always been in a regular class without supports. This term he got an A in French, B’s in everything except Language Arts (not a surprise) where he got a C.
Grades are all his…. he’s involved in Scouts, Karate etc.
He talkes “normally”, he acts mostly normally :)
That… to some would be cured…. but that’s the surface.
Finally, after 5yrs of fighting, at Gr 4 we have an EA (Ed assist) in the class for him. She’s there an hour to 90min to help plan his day and help with Language Arts. He sees the LST, one hour per week to again work on L/A. He sees the OT for sensory and computer skills. He has a token program in place to teach appropriate social and behavioural skills for his age level. We’ve had a psychometric test done and we now know where the Learning Disibilities are… “walking and chewing gum at the same time” and short term memory deficits. The SLP has nearly completed another Language assessment.
Finally at Gr 4, coping isn’t good enough. On the surface he appears “normal”…. but those that think these kids are “cured” are in for a nasty shock the older they get and the kids have issues coping and learning in classrooms, b/c what’s on the surface… is not reality.
S.
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