I’ve recently read two articles in which mothers of autistic children wrote that their children are “more than their autism.” Something about this assertion has been bothering me, and I want to explore why.
When I read the first article, I thought I’d entirely put my finger on the problem. The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives. Because I consider autism a condition with both positive and negative aspects (like every other condition in life), I attempted to argue with her on that basis. I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion. After all, who is going to argue with the inherent humanity of any person? I didn’t see anywhere to go, even though something still felt very wrong to me.
Then, I read another article, this time by someone on the spectrum who has two children on the spectrum. She, too, asserted that her children are “more than their autism.” Like me, she sees both the positive and negative aspects of autism, and so I had a much easier time reading and thinking about what she had to say. And yet, the assertion still bothered me. To try to get at why, I decided to apply the question to myself: Am I more than my autism?
That’s when I began to understand the problem.
The term autism is itself very problematic. I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people. I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way. In fact, I’m coming to feel that the word autism is simply a social construct. After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct? In some cultures, making eye contact, especially for long periods of time, is considered rude. In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis. After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual. We’ve been doing it for centuries. And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.
Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience. I can describe, for example, my inability to filter sound, my extreme sensitivity to the emotions of other people, my lack of guile, my visual acuity, and my hunger for color, texture, and pattern. And yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.” That’s a realm that the culture constructs constantly and values excessively.
So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught.
But there is something more about the question Am I more than my autism? that is very troubling. Or perhaps it’s the expected answer that’s troubling—the expected answer being Yes, I am more than my autism. I am a human being. Autism is just a part of whom I am. This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts: part autistic, part Jewish, part female, part this, part that. I don’t feel like a series of component parts. Everything I am is completely me: I am autistic, Jewish, and female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.
Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic. After all, am I more than a woman? Is my husband more than a man? To say yes, we are both human beings, is to miss the point entirely. Being a woman automatically means that I am a human being. Being Jewish automatically means that I am a human being. Being autistic automatically means that I am a human being. Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them. Being human saturates them. Being human is what makes being female, and Jewish, and autistic worth the effort.
And make no mistake: being a woman and being Jewish are not easy, any more than being autistic is easy. Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience. For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age. No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others. No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time. But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.
Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question. When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive. And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human. Separating the categories autism and human does not always result in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.
When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism. They are more than a medical diagnosis. They are more than the cultural refusal to celebrate them. They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.
I have no argument with any of that.
But I’m not going to answer the question Am I more than my autism? because I do not accept its premises or its implications.
I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not. I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not. I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not. I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.
A dream is only a starting place. Life is where the action is.
© 2010 by Rachel Cohen-Rottenberg
i read it several times. i don’t know whether to cry or cheer—possibly both.
I have been following your blog for a while and wanted to thank you for your blog it gives me some insight into my son’s mind.
I totally get where you are coming from and I think I agree with “blue dancer”.
I have been asked many times if I would change my sons autism (asperger’s) “cure” him so to speak if I could. The answer is no. Asperger’s is part of what makes him brilliant the way he sees the world part of who he is, he wouldn’t be him without it.
The only thing I think I would change if I had the power – would be his ability to cope with social interaction I see the distress and pain it causes him sometimes and I would do anything to make him not suffer but I can’t take away his pain and distress so I work with him to find ways to vent his frustration and give him a safe place to unwind.
I think you’re right. I’ve said on more than one occasion that, I am not defined by my Autism. Which is essentially saying that I am “more” than that. And what I’ve meant, of course, is the stigma. I told my husband last night that I wasn’t sure I could Walk for Autism Speaks again next year, because this year I felt uncomfortable with the way the described it as a devastatingly ugly illness that needed to be cured. I’m now feeling more than a little uncomfortable with that sentiment. He asked me why. It’s because, “curing” their autism could/would fundamentally change who they are. Not like curing cancer. The person is the same. The disease is gone. Like Catherine, if I could snap my fingers and change something for my kids it would be all of the EXTRA difficulties that come from our Autism. Life is super hard. It’s hard for NT folks! And because they’re my kids, I have a built in drive to not want them to have it as hard or harder than I did. It hurts me to see them struggle, and know precisely what they’re going through, because I was/am there too.
another great post (you seem to be on a roll lately).
it’s a conversation that’s familiar to people on the margins. do you remain yourself if you can magically remove a bit of you? well, of course you can’t. maybe you’d be a better person, but that sounds suspiciously like wishful thinking, and in my experience, usually has to do with some level of self hate, encouraged by hate from others, either directed or nice and generalized hate, like racism, anti-semitism, misogyny or homophobia.
i wish more people questioned themselves this way, but not when it’s motivated by loathing and intolerance.
My 11-year-old son has told me quite clearly (and quite maturely, I think) that he is ‘more than Aspergers’ when I (unnecessarily) start interpreting some behaviour or event through the filter of his diagnosis. So I think you’re right when you suggest these parents are reacting against their child being ‘known’ only by their medical diagnosis as opposed to their entire being. I don’t think all of them are rejecting autism per se.
Yes, Aspergers is a big part of who my son is, but my son is also just ‘Tom’, with all that entails. He is an 11-year-old boy who does things because he’s an 11-year-old boy. He’s a child who does things because he’s tired or hungry, like any other kid. And of course he’s also a kid with Aspergers, for all the difficult and the delightful that comes with that.
I accept his correction and I say to him that, yes, he’s right, having Aspergers is like having brown eyes or blue eyes or green eyes (or pale skin or dark skin) – it’s just one of the elements, one of the differences, that make us who we are.
After all, I don’t interpret everything his (neurotypical, teenage) sister does through just one prism. There’s a whole lot of ingredients in the mix for anyone.
Thank you so much for such a well-worded exploration of the same dilemma I feel when I read those words. I feel the same way: being autistic is only one part of who I am, but it is certainly an important part that contributes to who I am as a person.
At a meeting of my university’s gay-straight alliance, each member was asked to bring an object that represents a part of who they are, but it was not allowed to be directly related to sexual orientation or gender identity. The two people in charge of the activity then led us in a discussion about how we all have multifaceted identities, with all of those facets contributing to who we are, but none solely defining us.
This particular blog entry was a nice refresher session on that subject.
Rachel, I love this post!! Especially this: “I don’t feel like a series of component parts. Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore.”
When I wrote about the autism vs. autistic person debate, I questioned why advocates of neurodiversity acceptance would want the latter over the former. It seems the effort picks apart the person, rather than simply noting a fact about the whole person.
My children certainly have their challenges, but I view these challenges no differently than any ‘typical’ challenge encountered in childhood. Well, except for the fact that their differences leave them more vulnerable to the predatory nature of bullying – both by peers and by teachers who still haven’t graduated emotionally from elementary school themselves.
I think the question, “Is someone more than their autism,” is best answered exactly the way you said it: “I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way.” I’d love to quote you on my blog, if I may.
Perhaps it is a sign of the Neuro-Typical’s lack of empathy (or should I say Neuro-Challenged or Neuro-Limited) that this mother would say something like that. (Although I see from the comments that autistic people have also said such things. Oh well.)
Stat Mama, go right ahead. I’d be honored.
Thanks for this post. It is very interesting. However, as a multiple, I struggle with the idea that you can’t separate me into different entities, since you can. Each of them reflect part of who I am. Yet they do not conform to the rigid labels people stick on me (woman, autistic, atheist, etc.). I was just this afternoon writiing to another blogger about how autism defines me but isn’t the only thing that defines me, but I misworded myself and may’ve suggested you can strip off the autistic part of me. Now I understand even more than I did before why you can’t.
[...] Cohen-Rottenberg’s Am I More Than My Autism? I Refuse to Answer the Question first appeared at Journeys With Autism and is republished here with [...]
hi isabel—
i’m guessing that was in response to one of my comments, since one of mine ended in “oh well.” i’m sorry. that did seem flippant. am just trying to come to terms with having been in Huge Trouble for having said a bunch of things that were apparently inappropriate to the situation (thus, the foot in the mouth. it’s the core of much of my margin-sitting.) it seems i’m not doing to well with it.
i may think of hiring an ambassador-to-the-social-world (aka “social skills trainer”) to help me navigate the ins-and-outs. hoping for motivation and plans.
I am not more than autism, I am more because of autism. The challenges, physical and emotional, the stigma and the frustrations, yet I keep going, I have made a decision not to let autism define me but to let my remaining years define autism. Autism has given me a unique perspective on life and a degree of adaptability and creativity that more than compensates for my individual frailties and short comings. Thank you for a great blog!
hi bluedancer.
no – my “oh well” was not in response to you: i say “oh well” a lot. so we have something in common!
also, i think we both have in common this worry of having possibly put our feet in our respective mouths. I actually kept going over in my head my own response in particular the comments about “neuro-challenged” or “neuro-limited.” i kept asking myself where did that nasty tone come from? i guess i was wondering if *i* was being too flippant. You did not strike me as flippant.
Sweet of you to check in like that.
Thanks very much for this wonderful post. You’ve given me a lot to think about. I’m just starting to try to understand autism as my two-year-old was recently diagnosed. I’d previously agreed with the “person with autism” side of the autism/autistic debate, but you’ve given me reason to appreciate the “autistic person” side. I’ve also been told my son is/will be more than his autism, and I while agreed at the time (and in certain ways still do), I was uncomfortable with something I couldn’t identify. You’ve helped me put what was unsettling me into words and more solid ideas, and I thank you for that.
This is really interesting, and making me think about how I see this. I’m not sure I would use the expression ‘I’m more than my autism’, but I guess I do see myself first and foremost as a human being. Not that I see autism as an inhuman thing, or even an intrinsically bad thing (although there are frustrating parts of it – but then there are frustrating parts of being human!) but just that I see being human as fundamentally who I am, and while being on the autistic spectrum and being female and being English are all also part of me, and all entwined within each other and influencing each other, I don’t see any of those things as being the entirety of who I am. I just see that I am me, made up of all kinds of influences and characteristics.
I do see autism as a concept in its own right, albeit a vague and varied one, because I like to try to understand the specific differences in the brain, and how they manifest in my life and influence who I am, and also how they can manifest differently in different people’s lives, depending on that person’s temperament, and that person’s environment. So from this angle, the idea of a person being more than their autism makes sense to me, because there are so many influences that make a person who they are, although again, I don’t think I would use that specific wording of being ‘more than my autism’.
I guess the wording does sound like autism is some totally separate, superficial and distasteful thing, like a wart on one’s toe or something! Probably because the ‘I’m more than my’ expression is usually used about separate, superficial things that are stopping people see the ‘real person’ underneath – such as ‘more than just a pretty face’, ‘more than my income’, ‘more than just a number’, etc.
I just saw a relly nice answer to this issue:
“2. Autism doesn’t define a person… but it’s still a fundamental part of who we are.
Someone was kind enough to inform me that #2 on this list was missing, so I’m adding it! I do occasionally tend to miss things… especially big picture stuff like “Lists of ten items should have ten items on them,” because I’m lost in the details, like “Did I misspell anything?” If it weren’t that I already have a pervasive developmental disorder diagnosis, I’d also be diagnosed with inattentive-type ADHD–autism isn’t the only thing that’s going on in my head. In fact, autism is only one of many things, and most of them aren’t diagnosable as anything. I’m autistic, but I’ve also got the organization and task-switching issues you’d expect from someone with ADHD. I’m great at reading, poor at arithmetic, good at calculus. I’m altruistic, introverted, opinionated, and politically moderate. I’m a Christian, an engineering student, a scientist… So much goes into an identity! But autism colors all of it, like seeing through colored glass. If you were to assume that I’m the same person I would be without my autism, you’d be dead wrong!–because how can you be the same person living with a mind that sees things differently, learns differently, and has a different perspective on the whole world? Autism isn’t just something added on. It’s the framework around which an autistic person develops. I only have one brain, and “autism” happens to be a label that describes one particular aspect of that brain.”
from http://chaoticidealism.livejournal.com/, Reports from a Resident Alien
Very powerful stuff here. Amanda is right to refuse the “ism” and accept the “beingness” of being autistic. “Isms” work because we need categories in which to put people (ourselves included) so that we can think we know what to expect. Problem is, we’re all different, dealing with different stuff — even those of us who share any number of similar characteristics. Try to make any assumption about a Jew, for example, and you soon learn who becomes the “ass” in “assume.”
I learned a similar lesson: there’s no such thing as grief, but there definitely is such a thing as grieving. It’s a process, not a product, and everyone deals with it differently. People who are grieving exhibit as many differences as any other group — and yet, they are frequently told how or what to do to deal with their grief. It’s an individual thing, and people must give themselves — and everyone else — the time and space to figure out how to “do” it. I think the same is absolutely true for any group, including austistics, gays, and anyone else (group member or no) who finds him/herself out there on the margins.
Thanks for helping to clarify the trap of the “ism.”
I love love love love love LOVE this. I am awestruck by the beauty and power of your words. The evidence you’ve presented here can be applied to many disabilities as well as autism, my own disability being one of them. Thank you for this post, it is truly amazing. I may like to quote you at some point as well, if that’s okay.
Spaz Girl, thanks for your kind words, and yes, feel free to quote me! Just provide attribution and a link back to my blog.
[...] Cohen-Rottenberg’s blog, Journeys with Autism. Recently she has written several eloquent, inspiring posts that specifically address parents who want to ‘cure’ their children’s [...]
[...] Cohen-Rottenberg of Journeys with Autism writes Am I More Than My Autism? I Refuse to Answer the Question: I’ve recently read two articles in which mothers of autistic children wrote that their children [...]
[...] the DSM-IV Criteria for Autism. Soon after this I read more of Rachel’s blog, and discovered Am I More Than My Autism? I Refuse to Answer the Question. Both writers slapped me out of the autism-as-catastrophe mindset, and Rachel’s blog in [...]
Hi Rachel: Wonderful post. I just discovered your blog & will be reading regularly. I completely understand and support your view. I look at my 17 year old son, and I only consider that he has autism as a way of understanding his unique behavior. Knowing that he has difficulties processing information helps me to help me better communication and negotiate in his world. I don’t like to discribe him as an autistic teenager, but I do want to help guide him. I believe educating others as to what exaclty autism is will be the key to acceptance in the neorotypical world.
My son, Benjamin was diagnosed 2 years ago, and I agree that he is “more than Autism”. I do not wish that he wasn’t born with this, I believe he is who he is with it. I love everything about my little man and I feel this disorder is but any other obstacle in life. It is just one element of him that is both, like you described, positive and negative. I take away that there are more positive than negative. he is still so very young and I know he will do so many amazing things in this life. Even at his young age of 4, he has such an effect on those he comes in contact with. His joy and light are shown in his bright face, he doesn’t have to speak his joy, I believe it shines through in other ways. He has taught me so much, and I am utterly privileged to be his mother. I am better because of him.
What a wonderful spirit you bring to your parenting, Sara. Benjamin is very fortunate to have you as his mom!
[...] Am I More Than My Autism? I Refuse to Answer the Question by Rachel Cohen-Rottenberg [...]