One of the oddest results of my Asperger’s assessment was my lightning-fast transformation from “regular human being” to “collection of impairments.” I really hadn’t changed at all from the minute before my assessment to the minute after my assessment and yet, the way in which the world saw me began to change in significant ways. And because the world began to see me differently, I began to struggle with my sense of myself all over again.
I’m not sure that I can explain to someone who hasn’t been through it, or who hasn’t watched a loved one go through it, the devastating impact of the way that people see autistics. The insistence on looking at us through the lens of deficit is so extreme that we begin to see “deficit” as key to the definition of who we are. I have difficulties with eye contact: deficit. I can’t read nonverbal cues: deficit. I like routine: deficit. I can’t do small talk: deficit. I can’t lie: deficit. I can’t be indirect: deficit. I’m blunt: deficit. I depend upon my lists: deficit. I stim: deficit. And on. And on. And on.
How dare anyone define us in terms of what we can’t do? In my worst moments over the past two years, I’ve felt like a piece of swiss cheese, recognizable only by what isn’t there.
So, what did I do to find my way back to a sense of wholeness? I started looking at my strengths. The truly mind-bending result was that, once I had the autistic label, even my strengths started looking like deficits. I’m gifted at discerning patterns and organizing the objects of space: Those are just splinter skills. I can focus like a laser beam on any task: I am inflexible. I am good with the written word: I’m overcompensating for my difficulties with verbal communication. I have a keen eye for hypocrisy: I just don’t understand the usefulness of social forms. I value my non-conformity: I just don’t understand the usefulness of social forms. I’m very good at discussing subjects of mutual interest: I just don’t understand the usefulness of social forms. I express empathy by asking what a person needs from me and then doing it: I just don’t understand the usefulness of social forms. And on. And on. And on.
At some point, my healthy sense of outrage began kicking in and, in addition to reclaiming my strengths as actual strengths, thank you, I began reclaiming my so-called “deficits” as actual strengths, too. I have difficulties with eye contact because I am so sensitive to the information coming at me from a person’s eyes. I can’t read nonverbal cues because I am so sensitive to the fullness of a person’s energy. I like routine because I’m an organized person. I can’t do small talk because I’m sincere. I can’t lie because I’m ethical. I can’t be indirect because I’m honest. I’m blunt because life is short and there is much to be done. I make lists because I’m responsible and don’t ever want to forget to do anything that someone, somewhere, might be depending upon me to do. And I stim because, in case someone hasn’t noticed, the world is a pretty noisy, chaotic place full of highly irrational people, and I just need a little soothing. That’s a problem?
It’s a lot of work to have to continually fight this battle against the impact of the autism discourse. And what’s most exhausting is the fact that every time I fight this battle, I’m reminded that words like deficit, disorder, impairment, and disease permeate most discussions about us. That’s when I’m back to feeling that something is wrong with me, something that the literature calls a pervasive developmental disorder rather than simply a difference. Gee, thanks. Just when I thought I’d defeated the demon of pervasive wrongness, there it is again, and this time, it isn’t just my abuser doing the talking. Well-respected professionals, loony-toon wackos, and everyone in between can all agree on it.
Wonderful. But here’s the way I look at it: If all that someone can see are all the things we can’t do, and all the things we aren’t, rather than all the things we can do, and all the things we are, I’m not sure I can do a thing about it except to refuse to participate.
That’s when I return to the pivotal moment on my healing path: I have a pure soul. If there is one thing that is pervasive, that touches everything I do, it’s the spark of the Divine in me, and that spark is far more powerful and far more valuable and far more sacred than anything else. If all that someone can use to describe me is the language of deficit, disorder, and impairment, that’s the other person’s illusion, not mine. I don’t have to take it on, and I won’t. All I can do is to stay clear in my mind that a society that defines people by what they can’t do is a society with a pervasive problem, and the problem isn’t us.
© 2010 by Rachel Cohen-Rottenberg
Rachel, this is one of the most beautiful declarations of worth that I have ever read. I am seriously going to print it and put it on my wall to be read again and again, as well as share it online.
Thank you so much for putting it here.
Thank you so much, Donnell! I’m glad that it’s so meaningful to you.
Thanks for “turning it upside down”, as Alienhippy might say!
Very empowering! I’ll return to this whenever my spirit needs refreshing!
That AlienHippy is one smart woman! Thank you for the kudos, born2bme.
It seems I’m always so redundant when I come here to read your words.
Well said, Rachel. I don’t think there’s a thing anyone could add.
Thank you, Laura–although, of course, if you had blurted something out, that would have been perfectly fine, too.
Wow! I so get what you are saying. I am not responsible for what others do, only for how I respond to them. The problem is that since my diagnosis, there is no more mutual accountability in relationships, it is all on me. I received my diagnosis at 53 on Christmas Eve 2009. Aside from my wife and children the only other person I told that afternoon was my sister in law who used the R word made a reference to a character played by Dustin Hoffman and suggested I fix myself. Merry Christmas! The reaction of my sister in law was the start of a year of mind games and abuse from friends, family and mostly professionals. Although they never used the two R words most professionals conveyed the same attitude. Kinda makes you feel like Hester Prynne
Yup. I thought I’d traded in my “A” when I did my abuse recovery work, but apparently, the universe had another “A” in store. It’s an interesting life, don’t you think?
Brava. So well said, so well fought!
The part about how hard to explain to someone who hasn’t been through it… for me it called to mind Mayer Shevin’s poem “The Language of Us and Them,” which gave an amazing boost to my thinking on the whole concept of defining “them” through identifying deficits. Now you’ve given me another big boost — thank you.
(Hope my link works better this time…)
Wow! That poem is absolutely incredible. I’ve got to find someplace on my blog to post it. Thank you for the link.
Update: I’ve put the poem in the sidebar. It’s so brilliant, and I want people to be able to find it easily!
I needed this, thank you!
In August I was on vacation and I had a heart attack. I was in the ER and all the professionals ( I am a former nurse ) were telling me in order to get my BP down I needed to relax. I tried to explain that I had Asperger’s. I did that because I hoped as professionals that they would be educated enough to know that I was laboring under far more than they could see. The ER doctor said that he knew what Asperger’s was, he had a good friend that “Had It.” Needless to say, my care became very unsatisfactory after that. They turned down the lights very low and left me alone with my husband and peaked around the curtain from time to time. I was reduced to a stereo-type. I told myself then and there that I would never ever tell anyone that I was an Aspie ever again!!
” If all that someone can see are all the things we can’t do, and all the things we aren’t, rather than all the things we can do, and all the things we are, I’m not sure I can do a thing about it except to refuse to participate.”
Well said.
Beth, I hope you’re completely recovered from your heart attack. That must have been very frightening.
I can very much relate to what happened with your doctor, and I’ve been learning not to use labels when I have to advocate for something I need. Most people know nothing about Asperger’s short of a stereotype, so when I use the label, I immediately feel compelled to begin a teaching session, which saps a ton of energy and is of no use anyway. So now, when I self advocate, I try to be very specific about what I need, i.e. “I have auditory processing issues that make being in this noisy room impossible. I need a quiet place to wait. Could you direct me to one?” or “Sometimes, I’m not able to catch your meaning if you’re not expressing it directly. Could you explain what you mean?” It works much better. As for doctors who tell me to relax and take some stress off my life, I listen politely to their observations and suggestions, and then I go home and do what works for me. I don’t expect them to understand how hard I work every day just to listen, talk, and navigate my way through the world. I’m not sure that anyone can understand who hasn’t been there or who hasn’t lived with someone who’s been there.
bingo.
i’m finding the same thing happens when i need to advocate for myself. my GP is a nice guy, but doesn’t appear to have more than a stereotypical knowledge of AS either, and teaching others about me is occasionally fun, but normally sapping.
of course, the act of being so specific about my needs and my wants is so unusual that i get weird looks anyway, but at least i avoid getting caught up with misperceptions quite as often.
Bravo. I am going to print this and save it for my little girl, and for me. Last night I was reading a book meant to educate parents on Asperger’s and it was obnoxiously focused on deficits, and listing them with absolutes. The language that author used was outrageous, and the language you’ve used is beautiful. I needed this post. Thank you.
Thanks, RMama. Glad to oblige!
Hey Rachel.
So I’m still on the path of learning and figuring out if I am in the autistic spectrum.
You post and the comments here really relate to things I’ve encountered and felt and thought in this process.
For one thing, I finally found a psychology professional who can do diagnoses for adults and who takes me insurance (and who answers my calls). She’s very professional and “nice.” But in my initial interview with here she did use this language – the language of deficits and impairments – and it really put me off. It’s like she was so trained in this she had no other way of seeing or talking about certain things. For example, I was telling her how sensitive I am to people at work and in other situations and how I’m always spending a lot of energy trying to figure them out. She sort of said something like – “Oh so you have impairments in your social interactions and don’t understand social cues.” Well I don’t think that was what I was saying – I think I was saying that it was hard to figure out because I see so many possibilities and I’m sensitive to many nuances and it becomes a lot to process. She gave me a questionnaire to fill out about “executive dysfunction.” The very title of that is offensive. There are some questions in the questionnaire that also seem negatively biased, to the point that I don;t even know how to answer some of them because that iss not how i experience things. For example, there is a question that asks if I “throw tantrums” and with what frequency. I don’t see myself as throwing tantrums. But I do have breakdowns that shake my whole being completely. So how am I supposed to answer that? If i answer that I do not throw tantrums then I don;t have a way to document my breakdowns on the questionnaire. But I say that I often throw tantrums then I feel like I’m lying – I do not throw tantrums.
I have also thought about some of these things in relation to my kids. It seems that now we are in danger of them feeling like they have a “broken” mother and need to feel bad about their lives. But I wish hte mental health profession would help my kids feel good about me as a mother – even if I don’t live up to the image of the ideal mother. I often feel like it’s the job of the helping professionals to help us all appreciate each other. That’s why I really loved your statement that “a society that defines people by what they can’t do is a society with a pervasive problem, and the problem isn’t us.”
Hi Isabel,
The terminology is such a huge problem. In order to get diagnosed, we need to apply words to ourselves that are really offbase. It’s difficult to do that while keeping our own translation in mind; the words themselves carry enormous power and can easily interfere with self-esteem. I’ve read pieces by mothers who are absolultely heartbroken at having to use the language of deficit to refer to their sensitive, beautiful, brilliant children, but it’s the only way to get a diagnosis and services. We have a long way to go.
I really think it’s important that you assert to your children that you are not broken. You are different, you are not what they expected, you are not like the mothers of their friends, etc. etc. but you are NOT broken. I’m mindful of the fact that your eldest and my Ashlynne were born a month apart, and while we were both carrying our kids, I never for a moment thought that they would have broken mothers, and I still don’t, and I never will. There is nothing wrong with us, Isabel. We’re just different. Diversity is good. The guy who diagnosed me once asked “Is neurodiversity the new multiculturalism?” It’s a question you might want to start exploring with your kids in order to give them a language with which to frame the situation in positive terms that they can relate to.
Love you!
Isabel–the things you describe are a huge part of why it took me so ridiculously long to get diagnosed correctly. The ways that other people see and describe what we go through are not how we experience it, and if what we are experiencing doesn’t superficially match up to a stereotype, then professionals who don’t know enough won’t take it seriously. When I read popular media descriptions of autism, I never really connected them to myself. Only when I read descriptions of what it was like to be autistic by other autistic people was I able to say “holy cow, that’s me,” and only then did I start to see all the ways that the dominant terminology had been a barrier to to the things I was experiencing being seen for what they really were.
In particular, I also have what I can only call breakdowns–yours sound really similar to mine, actually. But they aren’t the “tantrums” that autistic people are usually shown as having–they’re something I’d never seen described or portrayed anywhere. So, as you say, if the doctor’s relying on a questionnaire that only allows you to answer “yes” or “no” regarding tantrums, you can’t document what’s really going on.
My final saving grace was a psychiatrist who explained why he did not rely on questionnaires–he used them, but worked more in an interview format that he explained he thought was just as effective ultimately in qualitatively determining what was going on. And there were several times in the time that I spent with him when he would ask me if I ever did such or such, and I would say “no, but…” and describe something reminiscent that he’d recognize as relevant. He could actually THINK–it was pretty amazing after years of doctors who couldn’t, or wouldn’t.
All excellent points, chavisory. I feel very fortunate in that I went to a specialist who did not rely on questionnaires. He just spent his time…..wait for it….actually talking to me and listening to all of my answers. What a concept, eh?
I have a friend who used to do developmental disability assessments, and she said that she really disliked the tests she had to give. She told me that the saving grace of the whole process came in the words of another professional who said, “The most important part of an assessment consists of all the things you write in the margins of the test.” I wish more specialists thought that way.
i was also lucky that my diagnosis (while a bit rote) happened with a doctor who understood that i’m just extremely different, not defective, and said as much as our session concluded. i know this, but it helps to hear it in such a stressful time.
Thank you Rachel. I’m doing better. I’m glad I got a wake up call, it could have been far worse.
I appreciate your sharing the wisdom that you have gleaned along the way. Your comments give me some much needed insight into what works and what doesn’t. I also appreciated how sensible these words were, “I’m not sure that anyone can understand who hasn’t been there or who hasn’t lived with someone who’s been there.” I’m adopting my future interactions on that premise from now on! Thanks so much for this practical approach.
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As difficult as they are at the time, wake-up calls are always good in the long run. I’ve had a wake-up call or two and lived to tell the story, thank God. I take better care of myself now.
Hi Rachel,
These last two posts have been on some very dark thoughts but it’s reassuring to know that the light in them comes from within. From you.
It’s true that society does judge us by what we can’t do rather than what we can. I’d love to change that but it’s not one of those things that I can do. After all, everyone is entitled to their opinion.
It’s my belief that the most important judgement is the judgement of oneself. We can be harsh on ourselves but ultimately true happiness must come from within. We have to let our poor self-judgement go and replace it with self-love.
If we can’t love ourselves, how can we expect others to?
Thanks for a great and inspiring couple of posts.
Gavin.
Gavin, you are absolutely right. We must replace self-abasement with self-love in order to have happy lives. That’s why finding the autistic community has been so important to me.
This issue of being defined by negatives, as if those “negatives” are all there is to a person,
touched a nerve in me: Judaism struggles with who/what/where is G-d, and some of our
teachers, knowing that they could never adequately paint a clear picture of G-d, have gone
the route of defining G-d by negatives — by what G-d isn’t. So there’s a very long list of what
could be seen as G-d’s “negatives,” and, by elimination, whatever’s left gives us, perhaps, a glimpse of the “real thing.”
I think they knew that the whole idea of trying to define G-d is as absurd as trying to catch
the wind in your hand.
Of course, we humans are faced with a far different challenge, as you so clearly state:
If we in fact have “negatives” as part of our makeup (and who doesn’t?) why should these
attributes carry any more weight than the “positives?” You make the point that we are who
we are — warts and all — and we’d better learn to love all of our attributes. Otherwise we’re in
big trouble! Well said!
Hi hubby,
Interesting that you bring up the idea of defining G-d by what G-d is not. That makes a certain kind of sense in a tradition that considers G-d incorporeal and unlike anything we can see, hear, taste, smell, or touch. But when applied to human beings, who are corporeal, defining by deficit works in the other direction: we run the risk of seeing people according to what they lack, which generally leads to seeing people as less than human. It happens with any minority group, and the tropes that result are hideous: anti-semites say that Jews lack lovingkindness and are the spawn of Satan, racists say that people of color lack intelligence and are like monkeys, homophobes say that gay people lack moral integrity and are like pedophiles, and (ahem) well-respected academics say that autistic people lack empathy, the basic building block of humanity. And on and on it goes.
Rachel, I am doing a brief presentation to a small group of teachers and I would really like to read out some extracts from this post to them (with a link to encourage them to read it in full!) Would this be ok?
bbsmum: Absolutely! I’d be honored.
Have you considered “Top 10 terrific traits of autistic people” at http://www.autismsupportnetwork.com/news/top-10-terrific-traits-autistic-people-92003432 ?
Traveller, thanks for posting the link. I love that list!
Rachel, just letting you know that the specialist yesterday did diagnose me with Aspergers/autistic (not sure what exact terminology she will use in the written assessment). I met with her 3 times, filled out lots of questionnaires, took some “thinking” tests. But she also did spend time interviewing me about my life now and in the past. She said something along the lines that throughout my life, I used my intelligence and problem solving skills and inclinations to figure out how to be social ( how to smile in public, how to make eye contact, how to respond when someone says “how are you”). I always thought everyone did that! I thought we all were thinking like that all the time. I guess not. I guess some people don’t have to work so hard at it. Reflecting on all this now I feel like I just want to rest from it all, take a long rest.
I feel good about this, although I also know that i still want to and need to figure out what this means in terms of what I need to do and what I need to ask for from those in my life, in my work situation, etc. I also feel that it will be different after I see the written assessment. There are certain things I can’t move forward on until I have that.
I want to thank you again. What a difference you have made in my life. I want to thank you and all the other bloggers out there, all the people with YouTubes about Aspergers and Autism, all the books and websites. You opened this door for me that I did not know was there. After I walked through it, I have discovered this alternate world, with myriad inhabitants, realities, paths, many different rooms, many open fields. A world that i thought was only in my head. It’s out there, it really exists.
Isabel, I’m overjoyed that you’ve had your observations and keen intuition about yourself confirmed. It’s an amazing thing to have a new framework for understanding how you walk through the world. I know that there is grief involved, too. For me, it’s wasn’t for “what could have been.” It was for all that pain I’d already gone through, and all the walls I’d slammed into trying to solve my pain by changing myself. It’s much better to know who I am and to be able to care for and love myself properly. I know that this is the beginning of great things in your life.