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    The Need to Label: Autism as Identity and Community Building
    By Kim Wombles | September 23rd 2012 05:12 PM | 4 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

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    I've been reflecting on autism and what makes a disability and what makes a personality, as I wait for the APA to get its shit together and release the new DSM. Will the change in criteria mean my children are suddenly no longer autistic? (No, it won't). Psychological disorders diagnosed by behaviors are subjective at best--from both the client's side and the psychologist's side. Biases and knowledge bases make sure that there is a lack of consistency across the board in who gets a diagnosis and what diagnosis it is. The codes for the DSM are used to get insurance reimbursement--a label is needed--a number code is required--the medical model requires labeling and coding everything if people are going to get services and have insurance reimburse or cover the cost.

    As a wise friend of mine likes to say--you only need the label if you need services. I tend to agree, but I do understand that recognizing yourself in a label that other people share provides comfort and a sense of community. I know that seeing other BAPpy individuals out in the real world and online lets me know that there is a whole group of people who get me, understand where I'm coming from, and can appreciate my issues. It's been a tremendous blessing, and I'm okay with my quirky tribe--I don't need to label it beyond that or rely on the DSM to discover who I am. I think we really want to avoid that if we can, especially given that the DSM sees only deficits. I know that I don't want my kids to define themselves by that flawed manual, nor to see themselves as a list of negative traits. My kids are not at all a cluster of deficits, and neither am I. Neither are any of you, for that matter. 

    I think there is a serious danger in adopting an identity imposed on us by others--for example, adopting a sick role because one has health issues--not happening--when we see ourselves the way others who are narrow in their vision see us--as fat, as sick, as defected, or as limited, we give our power to define who we are and who we want to be away, and I'm not a big fan of that. I refuse to be delineated by my challenges and I will not let an environment be created around my children that says they are limited or confined by their challenges. 

    There may, indeed, be comfort in numbers, but I think it's important that we don't pigeonhole ourselves into someone else's label. I think insisting on our uniqueness and value as individuals while noting our commonalities is the best way to promote a healthy climate for our children to grow up in, free to explore the range of their personalities without being confined to a checklist of deficits or stereotypes.

    Sometimes a number is just a number, and a series of checks is just that--a series of checks. In the end, those benchmarks can't tell the whole story of a person, nor should they. We don't need the label to find a community of similar-minded people.


    Autism Diagnostic Scales: When a Number is Just a Number

    (June 2012)

    While browsing facebook, I ran across a friend's posting of a link to a diagnostic test for autism and Asperger's that I hadn't run across before, The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R). According to the abstract,

    The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a valid and reliable instrument to assist the diagnosis of adults with Autism Spectrum Disorders (ASD). The 80-question scale was administered to 779 subjects (201 ASD and 578 comparisons). All ASD subjects met inclusion criteria: DSM-IV-TR, ADI/ADOS diagnoses and standardized IQ testing. Mean scores for each of the questions and total mean ASD vs. the comparison groups’ scores were significantly different (p < .0001). Concurrent validity with Constantino Social Responsiveness Scale-Adult = 95.59%. Sensitivity = 97%, specificity = 100%, test–retest reliability r = .987. Cronbach alpha coefficients for the subscales and 4 derived factors were good. We conclude that the RAADS-R is a useful adjunct diagnostic tool for adults with ASD."

    The 80 questions will undoubtedly strike those familiar with autism as being somewhat stereotypical; there are no options for "sometimes," either. The choices are now and as a child, now as an adult, only as a child under 16, and never. Sometimes none of those choices is quite right, and sometimes some of the questions are frustrating, like "The phrase 'I've got you under my skin' makes me very uncomfortable." WTF? What if it only mildly confuses me? Why would it make me very uncomfortable? Or "I feel very comfortable with dating or being in social situations." Really? Not every neurotypical person is going to feel VERY comfortable--it depends on all sorts of things as to what one's comfort level will be and much of that has nothing to do with being on the spectrum.

    According to the journal article, which examined the international validity,

    "A RAADS-R score of 65 or greater is consistent with a clinical diagnosis of ASD. A RAADS-R score of 64 or lower is not consistent with a diagnosis of ASD (sensitivity = 97%, specificity = 100%). It must be emphasized, however, that if a subject has a score of 64 or lower but clinical judgment indicates that ASD is present, the clinical judgment should take precedence. This is due to the many limitations of self-rating scales that will be elaborated upon in the discussion section."

    So, 65 or higher? Hmm. Before I read the study, I took the test. I answered the questions honestly as best as I could, having no idea what the cutoff scores were for autism. My score? 107.

    The scale has several subscales: language, social relatedness, sensory/motor, and circumscribed interests, and I was over the threshold on all of them, although just barely on the language subscale and social relatedness. Those were surprising, although I was not surprised that I was high on sensory/motor and circumscribed interests.

    What do I do with this new information, that I score above the threshold? Nothing. Do I think I'm suddenly on the autism spectrum or that I've always been and now know just because it scored more than high enough? No.

    I've long embraced my BAPpiness, and this test result doesn't change anything; it doesn't make me view myself differently. I've watched my children grow, seen how their traits and mine, Rick's and other family members are all so similar. I know my kids get it from us, that genes and environment have mingled in such a way that they qualify for and need the diagnosis to get the assistance they need, that these traits rise to varying levels of impairment in the three of them. It also leads to tremendous strengths, too, though.

    So even though this test, and others like the EQ/SQ/AQ suggest that I'm highly BAPpy (and sometimes tipping over the BAPpy line), I also know that I don't need the label and if the DSM criteria itself is rigidly adhered to, I don't qualify. Being BAPpy is a good enough explanation for how I see the world differently from others--seeing myself in my kids, there's a sweetness there that's also a little bittersweet. They've got some of my traits that I'm glad to see them share and others that I know cause them difficulty, and I'm sorry they have to go through some of the same things I did and still do, but because I have and do, I can help them along, give them tips and be there to understand when it's all too much.

    I think we can get hung up on labels in our search for why we are the way we are, in our attempt to find our own kind. I don't need a label to do that; I don't think that label is appropriate when disability is not a fundamental part of it. But that's my own opinion, and I respect that other people have other opinions on whether autism ought to be a personality type or a disorder.

    I don't know where autism will ultimately land, if people will win the day and move it to a full, inclusive spectrum that incorporates us BAPpy people on the light end and those with severe autism that leaves them significantly disabled on the other end--if we'll find a way to discuss this in such a way that the spectrum is recognized. Heck, maybe BAPpy will catch on, and all those people who are not impaired by their cluster of traits can come over to the BAPpy side and leave autism to those who are seriously and significantly disabled by the differences in their neurology. I know for me, though, that I cannot and will not co-opt a label that is still recognized by the medical, psychological, and educational fields as a disability; it would be a disservice to my children who are hampered or disabled by their autism to say that I, too, am autistic.

    My first post on BAPpiness:

    7/17/2011

    Bippity, BAPpity, Boo!


    In the autism community, it can’t help but be noticed that a good portion of the parents of autistic kids deal with the same kinds of issues their children do. Indeed, researchers also noticed that the personality traits that were similar in kind to autistic traits and behaviors, but usually of less intensity, were present in many of the family members of autistic individuals.

    These personality quirks and issues that mirror autistic traits (but usually less in number and in intensity) are known as the broad autism phenotype. Micali et al. (2004) note that the “genetic liability is not only confined to autism per se, but also applies to a constellation of subtler abnormalities, known as the broad autism phenotype.”

    Certainly calling this “constellation of subtler abnormalities” quirks and issues is a much more appealing way of dealing with the reality that many of us parents of autistic children have faced our own challenges in overcoming or working around or flat-out accepting (because overcoming and working around seem to be out of our reach) various social and communication deficits, or our own narrow interests that we hyper-focus on, or our own anxiety issues or sensory issues (or all of them).

    Some parents even come to the realization of their own place on the spectrum after having a child diagnosed. We see ourselves and our experiences reflected back in the struggles our children face, and we feel comforted in having a name for those struggles. Even if we decide that our cluster of quirks and issues don’t rise to the need of a diagnosis, we can see ourselves and our mates, and other extended family members reflected back in our children, and we have the term broader autism phenotype to explain it.

    For years, my husband and I have joked that when our powers combined (think Captain Planet), how surprising is it, really, that his issues and mine combined would bite our kids in the butt, or that our strengths would also be their strengths? Once acceptance and understanding of autism kicked in, it became increasingly easy to look around and see those traits in ourselves, in our siblings, and our parents. And it became a comfort. After all, here we all are, adults, and we made our way, mostly overcoming the worst of the issues and relying on each other to help us get through those hurdles that were still too high. If we could do it and do so without labels (other than those other kids or adults placed on us like geek, nerd, dweeb, weird, eccentric, odd, etc.), then there’s certainly hope that with a combined effort from family, school, and community, that our children will find their way in the world, hopefully with less shock and awe.

    In accepting autism and the personality traits and issues that go along with it in our children, we learned to be more accepting of our own quirks and our family members’ quirks, as well. We learned to cut some slack and give more second chances. Accepting autism doesn’t mean excusing bad behavior or free passes, but understanding where the weak spots are so that more directed, targeted effort to strengthen those weak spots can occur. It meant being able to name and understand some of the issues that had kicked us in our own asses, hard, over the years, and being able to go, well, alright, then, how do we fix this? We also learned that if we wanted our children to rise above, we had better do so, as well.

    Learning about autism and the broader autism phenotype, even when the scientific literature is difficult to not take personally, can be an illuminating experience.

    I’ve never minded geek or nerd, or being a combination of the two, and I don’t mind knowing that I am those things because I am BAPpy, nor understanding my husband and where he’s coming from better because of his BAPpy traits.

    No, life isn’t easy, and I’m not making light of the struggles that come with social anxiety or with the darn near OCD-like tendencies, and I’m sorry as all get out to see my kids struggle with my issues, to see those issues magnified and intensified in my children a hundred-fold, to realize that their genetic inheritance gave them autism and some other issues that I’d have loved to spare them. And it’s not particularly a happy moment to realize my lack of interest in social events and clubs makes helping them be more social creatures all the more difficult, but together we’re finding our niches, places where we are free to be our true selves, to leave masks behind, to be confident in who we are so that when our true selves are not embraced as we’d wish we have the internal strength to see that as the other person’s loss, not ours.


    References

    Micali, N. N., Charkrabarti, S. S.,&Fombonne, E. E. (2004). The broad autism phenotype. Autism: The International Journal of Research.

    This originally appeared at Laura's Life in the House that Asperger Built: http://lifeintheaspiehouse.wordpress.com/2011/04/28/bippity-bappity-boo/


































    Comments

    The DSM5 for autism, simply put, removes the non-disabled from the autism spectrum. This is important because Asperger Syndrome looks almost nothing like those on the clinical end of the spectrum. Also, the lumping of the non-disabled with the disabled has caused much confusion to the public over what autism is. The DSM5 also does away with "high functioning autism" which has no scientific definition. Those who no longer qualify under the DSM5 standards for autism will probably fit the "Social Communication Disorder" diagnosis, which is specifically not part of the autism spectrum. With public funds in support of the disabled tightening up, it is morally important that such assistance goes to the truly disabled.

    kwombles
    Since the current DSM doesn't define high functioning autism, I'm not sure why you think the DSM5 does away with it. It's a colloquial usage. Where is your evidence that individuals are receiving "public funds" who are not "truly disabled"?
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Labeling actually can help a person more than hinder it. Most people are uncomfortable with being labeled thinking that will make them less of a person, less intelligent, or different, which it doesn't. You are already different with or without a label. Being labeled just gives you a possible tool, it's up to you if you use that tool or not. I have been labeled with 2 different "neuro-disabilities" with another possible 3rd of having aspergers.. I've only self diagnose the aspergers. Now looking back on my social interactions, it all makes since now. Haha… I'm highly functional but sometimes when I don't take my meds nor use my coping mechanisms my "disability" does affect my job performance, my social interactions, and personal relationships with other people.
    Knowing what I have, can help myself understand my difficulties more clearly, to where I can learn how to use coping mechanisms and see what other people with my "disability" has used to make their lives a bit more functional or even highly successful. I believe it just levels out the playing field. It doesn't change who I am, it just changes my outlook on how I can do things. Knowing and having knowledge is power even when it comes to knowing about your "disability", what you do with said knowledge is up to you.

    rholley
    Regarding names such as “geek, nerd, dweeb”, the meanings of these are highly mutable.

    I first came across “nerd” on Sesame Street, where it was used to mean antisocial in the sense of wiping of one’s wiggy onto a chair arm.  The usage “computer nerd” in the sense of isolating oneself from society seems almost a turnaround in meaning — after all, one might wish that the spreader of bodily secretions *would* isolate himself from society.

    I am also reminded of Rude Dog and the (Seven?) Dweebs.

    Anyway, the whole article is food for thought.  In the meantime, how about this cat (which we refer to as *that* cat)?


     
     




    Robert H. Olley / Quondam Physics Department / University of Reading / England