Over the past year, I’ve stumbled upon a number of blogs by parents who talk about their children “recovering” from autism. I’m not entirely sure what “recovery” means in this context, but every time I see the word, I wince.
I know what “recovery” does not mean for these parents. It is not a euphemism for “cure.” I am sure of it. These parents are not looking to cure their children of autism. They know better. They know that an autistic person cannot be changed into a neuro-typical person. They love their children for who they are, and like all good parents, they are concerned with how their children will navigate the world and survive as adults. Up to that point, I completely relate to their concerns. What parent of a teenager wouldn’t?
It’s when people start talking about “building skills” and “playing to their children’s strengths” that the word “recovery” begins appearing, and I start feeling faint.
To put it bluntly, I’m offended by the whole idea that one can or should “recover” from autism. I’m offended by the implication that being autistic is a negative condition. After all, one speaks of recovering from cancer, or the flu, or a traumatic childhood. One can even be in a perpetual process of recovery from drug addiction or alcoholism. No (sober) person would argue against recovery from any of these conditions, because to most (sober) people, each of these conditions is a very, very bad thing.
Are there any good conditions from which one might recover? Can one recover from a happy childhood? A low cholesterol level? The ability to run five miles a day uninjured? I don’t think so. The word “recovery” assumes that something bad is happening—that something has been “taken” that must be “recovered.” But what does autism take away, exactly?
I’m not sure. I can make lists upon lists of all the things I can’t do—I can’t go to parties, I can’t make small talk, I can’t follow the thread of a spoken conversation, I can’t be in a crowd of people and think straight—but has anything been taken from me? How can I have been robbed of something I never had in the first place? Maybe I had a dream of being adept at social conversation. Maybe I took on someone else’s expectation that I should be the life of the party. Maybe I bought the whole white, educated, middle-class, American, neuro-typical idea of social success, and maybe I suffer because I’ve spent my life trying to attain it.
But I’m not suffering because of autism. I do not feel robbed by being autistic any more than someone who can’t carry a tune feels robbed of becoming an opera singer. Generally, people who can’t sing don’t dream of taking the stage for “La Traviata.” They don’t attempt to “recover” a voice they never had. Why should autistic people dream of making proper social conversation? What are we supposed to be recovering, exactly?
I don’t know anymore. All I know is that I feel normal. In fact, all I know is that I am normal. I’m normal for me, just like every other person on the planet.
Of course, I have my challenges. I perceive everything very acutely, so I have to adapt. I can’t clean my house without becoming disoriented, so I need to pay someone to clean it for me. I read other people’s feelings the moment I enter a room, so I have to be deliberate about what situations I’ll walk into, and with whom. I have plenty of challenges. So what do I do about them? I manage them. I work with them, and if they’re really driving me nuts, I work around them. Exactly how does that make me different from anyone else? Everyone has challenges, and everyone has to figure out how to live with them, right?
When I was doing occupational therapy, my OT wanted me to learn how to attend to more than one thing at a time. She said that I should be able to look in one direction, while listening to something coming from a different direction, while engaged in an activity. It’s called multitasking, and it makes me tense just to think about it. In the beginning, however, I did my OT exercises faithfully and gave my OT the benefit of the doubt. Very quickly, though, a little Aspie voice in my head started asking a number of pointed and impertinent questions: “Exactly why are you trying to multitask? Why should you? What’s wrong with concentrating on one thing at a time? After all, isn’t that the purpose of meditation and prayer? To clear one’s head and be able to see what’s right in front of you? Why are you taking on an entirely different set of values? Do you really mind that your body and soul are perfectly happy in a state of acute focus and awareness? Should I go on, or have I made my point?”
I had no good answers for any of these questions, so I stopped trying to multitask and decided that I liked my autistic hyper-focus just fine.
When it comes down to it, being autistic is just a question of difference. I am an unusual person. I have unusual strengths. I have unusual gifts. I am not like most people you’ll meet. Maybe it’s the Zoloft talking, but I don’t care anymore about being like most people you’ll meet. What’s the fun in that, for goodness sake? I can’t even remember why I once devoted so much energy to it.
Anything can be an albatross around one’s neck: wealth, poverty, fame, obscurity, and yes, even autism. Autism will be an albatross around my neck if the first words that come into my head every morning are “Oh, no, not THAT again!” But if I encounter autism with the idea that I’m able to experience life with a sensitivity and a directness that eludes most human beings, then I have a sense of freedom that I have seldom experienced in this life.
As a friend of mine pointed out in a recent email, my life is not a process of recovery. My life is a process of discovery. I can’t look at my life and miss all the things I’ve never had. There is no point to it. I have to discover what it means to be autistic in the here and now. I have to start with who I am, not who I thought I was. I can encounter my life as though I am a perpetual patient with an insurmountable problem called autism, or I can encounter my life as an adventure. Adventures are often arduous, never risk-free, occasionally terrifying, but always interesting.
One needn’t recover from an interesting life. One only has to live it.
© 2009 by Rachel Cohen-Rottenberg
Bravo, well said. I feel your truth in this post. Let the adventures begin.
Sometimes I feel the way you do. After all, if autism was so terrible, why is it so common? Obviously, there is an evolutionary advantage to having some people in the group who can focus the way auties can, on their special interests. Maybe Einstein and Mozart had it.
Other days, like now, I would give almost anything to be neurotypical. When stimuli overwhelm me, and I am forced to be the proverbial square peg in the round hole, it is stressful beyond description. And NT’s, even well meaning ones, don’t understand. Maybe neurological diversity is the next civil rights movement.
i would be happier if, instead of ‘recover’ or ‘cure’ (which i HAVE seen in print, somewhere), i read about specialists helping autistic kids learning how to manage interactions, to assess situations and be aware of their surroundings. reading about recovery just pisses me off. i mean, i know there are people who feel that AS is something that needs recovering from, but not me. is it difficult? yup. would i, could i change it? nope.
it’s a conversation every gay kid has with somebody at one point or another after they come out, and autism is viewed the same way. my interactions are frustrating to me socially, but not personally (well, not any more).
it’s not any one person’s fault that life being as someone different can really suck. but as the weirdo in the room, i’m also the only one who can deal with it.
Thank you.
It is okay to be yourself, such a huge important message. I hope I can successfully pass that on to my girls.
As a parent I want to give my girls the skills they need to live a happy fulfilled life, I hope to teach them to respect others and themselves, but change who they are, no I don’t want that.
My life is hard. I have to recover from being short and autistic. ::::sigh::::
Not.
I believe in recovery. But not to separate yourself from autism, but to able to function and find your place to shine in a world that caters to those in the normal curve.
Let’s look at Temple Grandin, I’m sure most of you aspies know who she is, but I’ll post her link anyway. http://www.templegrandin.com/templehome.html If Temple’s mother had signed off on her as unrecoverable and institutionalized her, we would not only be missing both a brilliant animal husbander, professor, scholar, but an aspie who can talk about her experiences. Playing to her strengths is what got her her PhD in Animal Husbandry. Because she was not neuro typical, it is said she has a better understanding of animals. Her mother pushing and lobbying to find her services has allowed her to function in the neuro-typical world.
No Autism isn’t a bad word, but it’s a challenge for those who are autistic to wade through the neuro-typical world, why not give them the tools to manage as best as possible? The answer is not autism is damaging, the answer is how can we improve the quality of life for our children? I can’t do nothing. He has to live in the neuro-typical world, and I will give him every opportunity to be successful, just as any other parent would give any other child. Which means playing to strengths, while not forgetting weaknesses.
There is no blanket formula for rearing autistic children. We just do what any other parent does, the best we can.
I hate the word “recovery” because it implies that my autism is not a part of who I am, it is something “other” that needs to be “fixed”. I dislike the usage politically correct “Person with X” usage with regards to autistics for the same reason. I’m an autistic person, it is part of who I am fundamentally, not something I “have”.
I prefer the term “cope”, “To cope” meaning to get by and lead a fulfilling life by using our autistic gifts in a world where most people are NTs without going nuts.
Oops, that should be “politically correct usage”
I think alot of it is mincing words a bit.
When I think recover from autism, I don’t want my son to feel pain at loud noises like he obviously does now. If theraputic listening, or any other vestibular therapies is going to alleviate that pain,sure I want him to recover from it!
Melissa, I understand what you’re saying. But words are very powerful, as are their implications, and I’m concerned with the implications of a word like “recover” when applied to autism.
I would never say that someone has to “recover” from their neuro-typicality, even though there are aspects of being neuro-typical that are quite painful to those who are wired that way. For example, I’ve noticed that a lot of neuro-typical people tend to give weight to things like social hierarchies and social rules. As a result, they often find their positions in such hierarchies extremely painful and the rules that govern their lives extremely limiting. Would I therefore suggest that they “recover” from their neurotypicality? No, I wouldn’t. If they asked me, I might suggest that they empower themselves and create a life they enjoy, but that would be it.
Would I like to reduce some of my acute sensory sensitivities? Yes. Do I think there is something wrong with having acute sensory sensitivities? No. I think there is something very right about it. I think there is something very wrong with a culture that does not take people with my kind of sensitivities into consideration and give us a respected place. I think that our society should recover its sanity and reduce the constant and unabated noise and cluttered visuals that follow us everywhere we go. Since that’s a tall order, all I can do is adapt, but I cannot use any language that suggests that something is wrong with a way of experiencing life that permeates every corner of my being.
Man this is one argument i really agree with. Im an Aspie and im so tired of people taking it negatively or acting like it is a burden. Sure my social skills are awful, and sure i cant organize to save my life, but why is this all so terrible? I like having Aspergers, and i like the sense of uniqueness it gives me to set me apart from others i know. I may be the wierdest person on the planet, but i love every single minute of it. The majority of my friends are my friends because we are similar. they are all like me and accept me for who i am, so who can say that having autism is something in need of recovery or cure?
I have suffered a lot due to the way I was born; the majority of the suffering was brought about by my differences–which involve an intensity of focus, sensitivity, and insight unmatched in those around me–not being accommodated. Small accommodations applied correctly and at the right times would have made the difference between being housebound by my 30s (despite x amount of skills/qualifications) and having a fulfilling outlet, an income, and some sort of place beyond these walls.
There are numerous people of all sorts in similar positions, whose potential contributions are being utterly wasted. The focus is all wrong (from my perspective), and I am not meant to “recover” from being myself, any more than people in general are meant to “recover” from the human condition. I am not a problem to be solved.
I’m a newbie mom, and out of my league in fully debating this. But I do firmly believe in providing tools and therapies designed to help my son learn to survive. He’s 3. I don’t know yet what his picture will be. But I do know that we will fasciculate learning in tried and true ways.
Do I think my son does justice by sitting and spinning objects all day? Or is he better focused when we do floor time and then he learns fine motor manipulation, he learns shapes and colors and all that other pre-academic stuff they use as a benchmark for the EC programs. Do I stop him from spinning objects? Heck no. But I try to provide other outlets for his sensory needs.
All this other stuff aside. I think it comes down to this, let me know if I’m wrong. You think that by using the word recovery that it implies you are broken. But to me using the word recovery means hope, that one day my son won’t spin objects from dusk to dawn. But be able to use his hands, mind and voice productively. Never would I think my son is broken.
Different roles, different perspectives, understand each other as best we can, is all we can do.
Melissa,
I don’t think for a minute that most people would argue against your giving your son all the tools he needs to manage his life. That’s what all good parents do, whether they have autistic children or neuro-typical children. The tools may be different, but the intent is the same. However, giving your son these tools does not mean that he will “recover” from his autism, any more than teaching my NT daughter to focus on her work was a way to help her “recover” from her neuro-typicality. It was just a life skill I felt it important that she develop,
Your son spins wheels to calm himself. That’s appropriate to his neurology. There is nothing wrong with it, and nothing hopeless about it. He is communicating that he needs to calm his nervous system. It is a very, very normal thing for an autistic child to do. It is also very normal that a parent would want to broaden his or her child’s options for taking care of his sensory needs. To my mind, it has nothing to do with hope or recovery. It simply has to do with parenting a child who has a neurology different from your own.
If the term “recovery from autism” means “hope,” then the implication is still negative, because autism is thereby equated with hopelessness. I know you don’t mean to do that, but that is the impact of the words you’re using.