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With Autism, "Recovery" Doesn't Always Mean "All Better"

By August 5, 2010

A reader writes:

I have now heard of the second person who claims that are totally 'recovered' from autism: (1) Michael Marino who is Dan Marino's son and now (2) Sean Barron whose book "There's a Boy in Here Emerging from the Bonds of Autism" I am reading. So, who do you think is correct? I have read that if a person completely 'recovers' from autism then they really never had it and now I have 2 people telling me that had it and are completely recovered form it. I am confused. Please advise.

This is a good question, and one that has no absolute answer. I can only give you my opinion.

Autism is a disorder that's diagnosed on the basis of behaviors, interviews and assessments; there is no medical test to be sure a diagnosis is accurate.  People going through the process of diagnosis may function particularly well or poorly on the day of assessment, making it tough to know whether a diagnosis is absolutely correct.   It's quite common for practitioners to legitimately differ on diagnosis (Asperger syndrome v. adhd v. non-verbal learning disorder, etc.).

In addition, it's perfectly possible to have symptoms associated with autism - and not be diagnosable because the symptoms are mild or there are not enough of them.

What's more, a person can have all the symptoms of autism, be diagnosed, and improve functioning only to the point of no longer being diagnosable as autistic. Yet that person can still have a whole lot of trouble with various issues such as social interaction, communication, etc., and be diagnosable with other related issues such as anxiety disorders, non-verbal learning disorder, sensory processing dysfunction, ADHD, etc.

In other words, it's not a simple yes/no diagnosis.  It's possible to develop or "recover" many skills, do relatively well in the world, and yet still qualify for a diagnosis - or to lose the diagnosis and yet have a very hard time managing day to day.

In the world of autism, "recovery" doesn't necessarily mean "all better."

Comments
August 5, 2010 at 4:08 pm
(1) Pia says:

Very well put.

August 5, 2010 at 5:21 pm
(2) Bill says:

I am endowed with Asperger’s. (Professionally diagnosed)

I am quite intelligent, a professional engineer trusted with multimillion dollar projects, and I go through life pretending to be normal. I have an Aspie son, quite intelligent, who pretends to be normal. I have another Aspie son, reasonably intelligent (at least above average), who makes little or no effort to pretend to be normal, whose life has been a disaster. Gothic may be cool in high school; in your thirties panache is just weird.

I have an Aspie brother who could never learn to not tell his boss how to do his job. I have another incorrigible Aspie brother who won’t accept the fact that he has Asperger’s and adjust his behavior or seek help, even though his social aberration is profound to the casual observer.

Pretending to be normal is a choice, not a cure. Maybe with the proper training or with exposure to trauma or ill consequences, you are more likely to make the choice to pretend to be normal. Could the willingness to make that choice be considered a “cure”, maybe. Making that choice makes all the difference in the world in social and workplace success. I suspect intense behavioral therapies condition children to make the “right” choice, if for no other reason than to avoid more behavioral therapy.

I did not coin the phrase “Pretending to be normal” (I understand Temple Grandin used it), but the phrase is so spot-on correct that I cannot avoid using it. My strategy for pretending to be normal is to dress professionally, be impeccably polite, and keep my mouth shut, since I seem to screw things up every time I open it in a social context.

If you get a child to pretend to be normal, is the child cured? Why are there some successes and mostly failures? Dr. James Coplan has been doing an excellent online blog series on autism and says “two children with the same degree of atypicality will have vastly different outcomes, depending on the coexisting IQ.” I believe he is is quite correct, and success is dependent on IQ. I also believe success in dependent on the choice to pretend to be normal. IQ and making the right choice are not mutually exclusive, nor are they always in lock step. My brother who can never seem to get along with his employers, and in my opinion makes little effort to pretend to be normal, seems to feel it is his right to behave they way he does because everyone else is so stupid (he is considered a genius).

I admit to being a social leper, yet both of my Aspie sons, the quiet cerebral one, and the gothic hell raiser, seem to have friends and a social life. My genius Aspie brother claims to have a social life which dominates his existence (which mystifies me since I consider him to be an insufferable jerk.)

If social life is the criterion for cure, all three must be cured, yet in my opinion only the quiet cerebral son has a prospect of a quiet, relatively stress free successful career.

I recently had a torn deltoid muscle, an excruciatingly painful affliction. I learned that by consciously flexing my latisimus dorsi muscle, I could “shut down” the innervation to the deltoid, and “limp along” with no pain at all, and 95% of the use of my arm restored. To the casual observer I would appear to be cured. Does conscious effort to do things slightly differently constitute a true cure?

Should parents expect cures? My opinion after growing up with one sibling with Asperger’s, another I am certain has Asperger’s, and three more I suspect have Asperger’s, plus two sons who I am confident have Asperger’s, is: You will know early on if your child is intelligent or not, and you will know early on if your child is a brat or not. Do not expect a cure if your child is unintelligent and a brat. You might get lucky if you have an intelligent docile child; he may learn to pretend to be normal.

What criteria did some of the famous “cure” claims use? Is mainstreaming in regular school a criterion? I and every one of my Aspie relatives was mainstreamed in school. Did they start talking? My brother didn’t talk until he was older, then immediately spoke in complete sentences.

August 6, 2010 at 1:04 am
(3) Twyla says:

Some people do recover from autism. Here are some recovery stories:

http://www.autism.com/fam_recovery.asp

h t t p : / / w w w .danasview.net/recover.htm

h t t p : / / w w w . childrenscornerschool.com/recoveries_new.html

h t t p : / / featuresblogs.chicagotribune.com/features_julieshealthclub/2007/09/autism-recovery.html

August 6, 2010 at 7:35 am
(4) autism says:

It’s a tricky issue, and I suspect a lot of the disagreement is over semantics.

Dr. Susan Levy at Children’s Hospital in Philadelphia says that about 20% of kids diagnosed with autism at some point lose that diagnosis. On the other hand, she says she doesn’t consider that a “cure,” because those kids still have related problems and issues.

I’m really not sure I understand the difference between “no longer qualifying for a diagnosis” and being cured or recovered – except that the terms “cure” and “recovery” do suggest that the disorder is completely gone. And that is very rarely the case.

Looking at some of the autism success stories we see in the general community (as opposed to GenRescue “recovery stories,” which are quite controversial), I can say that many people who grew up fairly profoundly autistic do gain the skills to do very well indeed.

Folks like Stephen Shore and Temple Grandin are successful by almost any measure. Yet both have difficulties that are related to autism, and both must take measures to manage their worlds. IMO, those folks and others like them are not “cured” or “recovered,” but since autism hasn’t stopped them from doing what they want to do and doing it well, it really doesn’t matter. Most people have something that gets in their way and must be managed, whether it’s allergies or diabetes or dreadful family situations, etc.

As I said in the post, when it comes to autism “recovery” doesn’t always mean “all better.”

Lisa

August 6, 2010 at 2:26 pm
(5) Danielle says:

As a teacher for students with high functioning/ Asperger syndrome, in my experience it boils down to self-reflection.

Awareness is the battle and self-reflection the key. Each student is reached in their own mean and to varied degrees of success. I have some students that appear completely cured within this higher functioning population. Are they cured or are they aware of what reactions “look normal?”

Hard to say… For myself its not what appears on the outside… but how they feel on the inside when they leave for the day =)

August 6, 2010 at 8:25 pm
(6) Ritch says:

I am Aspie as well. I think “pretending to be normal” is a perfect way of describing the dynamic. It is a “social skill”. Taking part successfully in society has been enabled because I have been able to learn how to be sociable. It is not natural. I do not particularly enjoy the inane behavior that goes along with it sometimes. I see it as a survival skill. It helps me achieve my goals in life (vocation, education, day to day and leisure).

August 7, 2010 at 11:08 am
(7) Jay says:

Coincidentally, I just wrote a blog post a few days ago on this regards.

Can We Cure Autism? Should We?

My biggest concern is, would my son be happier by being cured of autism and become ‘typical’? We go through so many ABA drills every day. I’m getting sick of doing the same thing over and over that is not natural to me. Wouldn’t he feel the same way?

August 7, 2010 at 1:07 pm
(8) Malia says:

Does being neurotypical arbitrarily equal being perfectly fine? People who never warrant a diagnosis of autism don’t have to be perfectly fine to be considered “normal” or “average”, so my question is why do people seem to expect that people, in order to lose a diagnosis of autism, have to be perfectly fine or “perfectly neurotypical’ in order to be considered “normal” or even “average?” When is “good enough” good enough?

August 7, 2010 at 1:50 pm
(9) barbaraj says:

I think of autism as the “real deal” that brought about a diagnosis. Along that road, are IMO kids with subsets of behaviors and sensory issues that never culminated as full illness. These NT’s that are so often used to compare are likely “imo” affected in some way with a level of adhd, capd, hyperactivity, behavioral issues, speech problems and on. Some of these kids likely were stimming ,flapping, possibly non verbal, and gained enough to join the group of “normals”, the “new normals”. As example, I’ve discussed this before, the Grandmom’s of this generation see a difference in most boys. They say there’s a little something “not right”. This is one reason why I “hate” comparisons using vaccinated autistic boys vs vaccinated boys. I think there are similarities that shouldn’t be overlooked. If my calculations are right, normal will be autistic in the near future,anyway. Last night, as my six year old named every member of both baseball teams, called the lineup, explained the stats on most players to my 45 yr old brother, I thought, OMG this isn’t really “normal”. When my 14 yr old scored a perfect score in math in nationwide testing, I thought the same. Yet when I asked him to start putting the bunk beds together he ,armed with a screw driver ,was at a total LOSS? My brother could have put anything together by the time he was ten. Potty training of the new normals is different too, my vaccinated kids were slow, the youngest almost 3 1/2, the baby “asked” to go potty when he was under 2. I’m not so sure it’s going to be that difficult to blend anymore, as example, yesterday there were five autistic children at the pool, yet in observation there were many more that just missed that diagnosis. I’m more strict with my “criteria” perhaps than the cdc, two were non verbal, one age 6 ,one age 9, three were around 4 to 5 , with the gaze and gait and stims. This wasn’t a “meeting”, this was the normal group at the community pool. My blonde haired ,fair skinned baby, has a hint of tan, I noticed that most of the kids did not. So I added sunblock to my list of suspects:)..and yes.. even I think beyond vaccine..sometimes.

November 11, 2010 at 4:14 pm
(10) Elly says:

My 4 year old son was diagnosed with PDD-NOS nearly a year ago. Following a year of therapy (6 months of intensive ABA and speech before this), I cannot see how he still fits the diagnostic criteria, although he still has substantial language issues. We are in the process of having him reassessed, to at least determine his current status.

A lot of people have questioned my decision to discover if he can be ‘undiagnosed’. I am all for self-acceptance and tolerance of our natural variations, but at the end of the day my son was diagnosed under criteria that establish mental illness and disability. It would be wonderful to view special needs children as just special, but that isn’t how our world has opted to view this disorder. Having seen the struggles of many autistic children and families (particularly with LFA, which accounts for 75% of classical autism) I have a great deal of sympathy with this view. Take my boss who is up at 3am with his severely LFA son, cleaning the faeces he has smeared into the floorboards. Okay at 2 years old, not so much at 10. It’s not all happy clappy rainbows for every parent.

When I look at my husband, his brother, his mother and father, all have significant traits of HFA. They are all extremely high achievers in life (engineer, barrister, financial analyst, company director). Apart from a few references to ‘social anxiety’, all managed to achieve happy lives without labels that would have limited expectations of their achievements. It shouldn’t be so, but it is.

I often wonder whether I have done my son a disservice by looking for an overarching label for his symptoms rather than just treating the symptoms themselves. As it turned out PDD-NOS wasn’t much of a label – a sort of catch all for elevated risk of autism, or the presence of autism traits.

February 17, 2011 at 1:24 pm
(11) Ashley says:

I agree the definition of recovery is a question of semantics. For me, recovery means the person is no longer disabled by their autism spectrum disorder.

Everyone person on the spectrum is unique. If they weren’t, I think we’d have a lot more answers and support for our children (and adults).

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