There is a rumor that I have been hearing about autism almost since the day it entered our lives five years ago. I have heard this rumor being whispered in the background whenever rational people gather to discuss autism. I have seen hints of it in every new bit of research and every new strategy for helping children with autism. The rumor is this -
Recovery from autism is possible.
The other day I actually came face to face with the rumor. For the first time, I met a child who had been "recovered" from autism. The exact details of the case are irrelevant but, suffice it to say, there was enough overlap in the path that this child travelled and our own that I am convinced of two things.
First, this child really did have a diagnosis of autism and not high functioning autism or Aspergers. And second, even after several hours of watching this child in a social setting and knowing that they had a diagnosis, I couldn't see even the smallest hint of their autism.
While I don't know what exactly "recovered" the child - whether it was biomedical treatments, dietary restrictions, behavioral therapy, or something else completely different - I don't think it really matters.
What matters is that this child's parents took the initiative and provided the extra help that the child needed. What matters is that the child's hard work payed off. I mean, lets be honest, if autism is hard on the parents, it is doubly hard on the child. As parents we can only provide extra help, it is up to the child to do the really hard work of actually learning to overcome autism.
In this case, with this particular child, the combination of treatments and the child's hard work payed off. The child overcame the disabling aspects of their autism. So I beginning to think the rumor might not just be a rumor after all.
Recovery from autism is possible.
Sadly enough, in some parts of the autism world saying those words is like throwing down the gauntlet. You even suggest that your child needs to be "recovered" and you will be told, in no uncertain terms, that there is no need of recovery because there is nothing wrong with them. You will be told that that the problem isn't autism but rather how society responds to autism.
If you are particularly lucky, you will have the pleasure of having someone tell you that you are the problem. You might be told that the problem is that you don't accept and love your child for who they are. I wish I were making this last bit up, but unfortunately I'm not. I have been on the receiving end of this nonsense on several occasions and I have seen other parents attacked in this fashion many times.
So, for the record, to everybody who thinks that trying to help your child recover from a debilitating condition like autism is tantamount to rejecting your child (this means you Amy Caraballo), I have one thing to say to you -
Go to hell and take your stupidity with you.
This idea that recovery from autism is bad is predicated on the idea that autism is a fundamental part of a person and that to "recover" a person from autism you would have to make them something other than they are. So by wanting to "change" a fundamental part of who a person is, you are saying that you don't accept the person for who they are. If you don't accept your child then you consider them an inconvenience and you don't love them.
If you couldn't have guessed by now, I don't agree at all with that idea. Don't get me wrong, I am completely for having society be more accepting of people with autism. Society isn't very accepting of people who are different and there is a lot of work to be done to make it so that people with autism aren't automatically ostracized.
But I don't think that blaming society for an individual's difficulties is a particularly useful approach. Autism can be a debilitating condition and it is one that needs to be addressed at the individual level. Society doesn't stop a person from being able to communicate nor does it create the non-functional rituals and obsessions that are the hallmark's of autism. While it may make it harder for a person with autism to socialize, it doesn't create the underlying social awkwardness in the first place.
These issues are caused by autism and are going to exist whether or not anyone "accepts" them or not. So to help a person with autism, you have to attempt to find an individual solution to that person's specific difficulties. If you do that then you too may be able to help your loved one recover from their autism.
We have not reached that point yet with our children but I hope that someday we will.
I will never understand why some people believe that their child or they themselves are who they are because of autism. I look at my son and believe that he is profoundly challenged by his disability and yet lets his true personality and strengths shine through in spite of the autism. Take the autism away and you still have the same person just with a lot less personal discomfort and a real chance at having an independent life.
ReplyDeleteAs for recovery and the possibilities. You take two 2 year old's with seemingly similar functioning levels. You treat them with the exact same protocol of therapies, diets & medical intervention right down the line and you quite probably will see two very different outcomes.
I think we have all received THE lecture at some point. The self-appointed spokespeople for all things autism. Whatever! ;)
As the mother of four neuro-typical children, I couldn't agree more with your comments. Once upon a time I lived in a house with strange little creatures who flapped their hands, walked on their toes, had two hour tantrums, didn't talk, refused to eat, stayed up half the night, hated baths, refused to get dressed, wouldn't hold my hand, abhorred riding in the car, never looked in my eyes, wore diapers and drank milk from baby bottles long past the appropriate age... I was miserable and so were they (if their constant whining, crying, screaming and hitting were any indications) but then we did intensive ABA for years until they could walk and talk and play and think like every other kid their age(s). We did it until nobody could tell the difference between our kids and theirs, so they could go to school without aides and play sports and join clubs and have friends and hopes and dreams for their lives. Did I love my kids any less because I hated their autism? No, I believe I loved them MORE because I sacrificed my career, my life and my life savings to give them that opportunity to truly live, unfettered by the chains of autism. My kids weren't high functioning and only their baby sister was born "normal." It was the hardest thing I have ever done in my life -- and theirs too! -- but oh so worth it! This B.S. about how "my child doesn't have to change, society does" is crazy talk. My children are still quite young and we have been very open about what they have been through. My 11 year old son says he remembers what it was like when he couldn't talk and would have violent tantrums... he has told me that he had the words in his head but he couldn't make his mouth say them and that was very frustrating for him. My other two daughters have similar memories about finding the world scary because they didn't know what to expect and feeling lonely when other kids didn't want to play with them. I am confident they will grow up to become productive citizens and happy adults (if their current accomplishments are any indication). How can giving my children a future be considered bad parenting? If a typical child struggles with math does a parent say "well, school shouldn't use math because my child can't do it"? No -- we get that child extra help so they can succeed in school (and therefore society). "Fixing" a child's autism is no different than "fixing" a child's learning deficits. To do otherwise is tantamount to child neglect in my books. As parents we are suppose to prepare our children for the world -- not the world for our children. I've done that and I will deflect any criticism that comes my way by saying that when my children grow up and get jobs their taxes will help to pay for the long term care of these other parents' children. No need to thank me, really - ha!
ReplyDeleteThere are, however, those individuals with autism spectrum disorders who are not in pain or misery, but who do think, imagine and interact differently from others. These, in general, are the people who are not interested in being "cured."
ReplyDeleteThis, in my opinion, is what makes any conversation about "autism" so difficult: we are all too often talking apples and oranges.
No one wants their child to live in pain or poor health. But pain and poor health are not always a part of the equation when it comes to autism spectrum disorders.
Lisa
Thank you for this post. I want very much to remember that recovery is possible. Even though it might not be ours we work hard... all us into that direction. To recover as many skills as possible to lead a fulfilling independant life.
ReplyDeleteI have one that not only caught up academically but passed most of them - A's and B's, - now in Gr 6. One who will probably lose even a dx of NLD by Gr 8. We still need to keep working on the sensory, claustrophobia and social skills. It is all coming and rapidly.
ReplyDeleteYes, he will be "recovered". No, no brain transplants... or personality changes. He's still very litteral, still has anxiety issues, is off to social skills camp this summer for a week... He is who he is. But what he is now is independant.
BUT, he was taught. Taught behaviour - dealt with the aggression and headbanging, still do, taught his 3R's, taught social skills, speech, OT, etc. Being "mild" he learned.
We have one that will never become that independant. But every day we work towards that goal anyways. I ignore the paperwork from the professionals... IQ in the 60's... let me prove that wrong... and we are. Non-verbal, let's keep pushing communication, let's enrol him in the augmentative communication program....
Who knows, maybe one day he'll get there too. Maybe not... but I want him to be as independant and be able to communicate his wants and needs and to take part in everything... even if he needs a little help to do so.
Yes, it is possible... but I think a lot of pieces have to fall into place to get there... and you have to decide that autism, is a "disability" not "a different way of being".
What I find baffling and really annoying is how people like to think that their autism story is the autism story of every other person with autism. Apart from some crazies, most parents know what is best for their children. What you do for your child (autistic or not) is also influenced greatly by your cultural child rearing practices and world view.
ReplyDeleteTelling someone that oh your kid will probably not make it because they are not getting 40 hours of ABA or not being homeschooled, or not seeing a DAN doctor or ARE getting all these things is a load of crap - because people with autism are DIFFERENT from each other.
Recovery is possible but it seems very rare, and there is no way to predict who will recover based on severity. As a parent it is hard to hope but not to expect!
ReplyDeleteOne of the problems with what you are saying is that recovery can be spontaneous and depends on the individual and there is no cause and effect relationship between treatment. I was severely autistic from age 2-1/2 to 4 years of age and Bettelheim type psychoanalysis was the only intervention I underwent and I recovered my speech and partially (though not 100%) recovered from my autism. I believe some will spontaneously recover (at least partially) some not at all regardless of what intervention is done.
ReplyDeleteI agree with the rest of what you are saying that society is responsible for autism. Clay Adams and many others in the neurodiversity movement are trying to bring back the Bettelheim era of the 1950s and 1960s which I and my parents lived through. With Barack Obama becoming a proneurodiversity president we have gone backwards in our thinking towards autism and brought back Bettelheim.
1. Once again, lack of clear etiology muddles this... ASD is a collection of symptoms, which may or may not have identical causes and so may or may not respond to identical "cures."
ReplyDeleteAnd, once again, the APA's disservice muddles the discussion because the ASD population has such a range of "involvement."
As to the crowd who says changing (recovering" a person with autism obliviates the person, well, take out the word autism and it is readily apparent what nonsense that is: after a broken leg has healed the patient's identity is no longer "person with broken leg;" upon completing elementery school a person is no longer a little tyke, etc (reducto ad absurdam). Change is what we're about. Charitably, I say this whole "identity" thing illustrates the validity of the speakers' diagnosis, as to social relatedness...
Lisa Jo, I couldn't agree more. This seems so obvious.
ReplyDeleteHmm. But Autism isn't a broken leg. It is completely neurological. I find it baffling that so many people think that brain function and atypical neurotransmitters don't deeply affect personality. Brain injury leading to personality changes is well documented throughout history. I am actually very pro ABA style treatment, but I accept that my son going through treatment might become a different person than if he didn't. But if you enjoy any quirkiness or out of the box thinking your child has, expect a cure to eliminate these things along with the debilitating effects, and accept that it is a tradeoff. My son was incredibly advanced with gadgets before 18 months of age, and was severely autistic when he started ABA. He has definitely moved within the spectrum to a more milder form, but no longer seems profoundly advanced with electronics. It's a tradeoff that certainly some HFA adults would rather parents not make for their kids, but they fail to realize parents of NT kids do this to some degree as well- pushing certain values, developing skills and talents... Okay, it's not exactly the same, but parents have the right and the responsibility to influence their children for the better.
ReplyDeleteHi Secret Sunshine,
ReplyDeleteI think we may be looking at autism in slightly different ways. Yes, autism has to be neurological because of the changes in behavior but I don't think that is the end of the story. What causes the neurological changes? And don't say "genetics" because extensive searches have failed to find any genetic commonalities in more than a very small subset.
And while I would agree that these neurological problems could impact personality and correcting them could possibly "change" a personality, I don't think that is particularly meaningful. After all (as you said), the parent's job is raise the child and everything that you do impacts the child's personality. If you don't help shape your child as they grow then you aren't doing your job.
And what about other neurological conditions such as depression? I know first hand that depression can alter a person's personality. But I have never run across anyone who suggests removing the "personality" changes from a condition like depression as a bad thing.
In general, I think the whole "personality" altering argument is a red herring that unfortunately gets tossed around far too often. I also think that the assumption that personality is based in brain wiring is wrong. As the parent of identical twins, I can tell you that identical twins can have very different personalities - even from a very, very young age - while at the same time having almost identical physical characteristics. That suggests to me that personality isn't just based in how the brain is wired.
Although, for that matter, the symptoms of autism can be quite different in identical twins as well. They do have the same core problems but the way that the problem manifests can be very different. For example, both twins are sensitive to sound and loud noises. But one runs away from loud noises while the other seeks them out. The one can't function if there is a lot of background noise but the other doesn't seem to function well unless there is a lot of background noise. Same problem, same genetics, but a very different outcome.
That suggests that while the core problem might be neurological, the actual outcome isn't determined by the brain wiring alone. So if that is the case, would altering that wiring change the traits or just remove the impetus that is forcing the behavior?
Or in simple terms, would "fixing" the neurological problems "change" personality or would it just restore the person's ability to choose what to do? My experiences have suggested to me that it is the latter rather than the former.
One other thing that I wanted to bring up that isn't mentioned that frequently - the obsessions of a person with autism can change as they get older. Even in the absence of treatments like ABA, the person can still decide to shift their interest on their own. I have seen this several times in my own children. For example, one of the twins had an extreme interest in ducks, and then one day she just stopped and moved on on her own.
So if your son was very interested in electronics but no longer is, it might simply be a matter of him shifting his interests. Or maybe it isn't, I have no way of even having an informed opinion on the subject. But I would not assume that the ABA (or becoming higher functioning) is what removed his interest in electronics.