Monday, January 23, 2006

A look at labels...

Recently I discovered the blog by "shinyrobot" (, who is a young adult with Aspergers Syndrome. I have been not only illuminated by their writing, but have found it very enjoyable as well. In a recent post, shinyrobot discusses their feelings about being labeled "autistic" (take a look- it's really cool!), & this got me thinking about the whole label thing, too.

In our state, a child receiving special education services has a "triennial review" (every 3 years :) where they undego complete restesting to assess their progress & also their current needs. B had his first "tri" this past fall (although he's been in the system for 4 years, they date it from the most recent diagnosis or change in diagnosis), which meant our first comprehensive look at his developmental development since kindergarten. B did not have much difficulty with the process at all- he tends to turn on the charm with any new adult he meets & since the contact was short-term, the honeymoon never ended :) His current OT & Speech Therapist were able to arrange to do those areas of testing themselves, which also minimised any possible discomfort for him. I was more unsettled by the process because I had a few weeks of various people, from social workers to psychologists to school nurses, calling me to update his records. I was a bit startled to be asked about B's prenatal history & early development by one of them, since not only had I assumed that this info was recorded last time they asked (& hadn't changed- duh!), but I am having a harder time recollecting all these things accurately as time passes (good time for me to get it all in a blog, huh?). I was most taken aback by my first conversation with the psychologis who would be doing all of the psych & academic testing with B. Nearly the first thing she asked me was whether or not we really wanted B to be labeled as having Asperger's Syndrome. (It did not lend me confidence that she pronounced "Aspergers" as though there were a "j" in the middle...). I explained to her that, although B has collected 2 more significant diagnoses (OCD & Tourettes) since he was diagnosed with Aspergers, his dad & I feel that this is the term that best describes B's functioning, particularly as OCD & Tourettes can be a part of the austism Spectrum anyway, & so we are content with it (she gracefully accepted that). More than content, really, because this "label" has given us an important framework within which to live & organise our lives. It has given us a name, so that we can do research to learn what we can do to help. It gives B membership to a group of others who have similarities to him. Legally, it entitles him to speech therapy so that he can learn pragmatic speech to help him socialise more effectively (a kid with his high scores on speech assessments would not otherwise be eligible for assistance, even if they really needed it). Ultimately, isn't that what labels for? They are supposed to be useful & helpful ways to organise & interact with the world. OK, I'm not naive... I know that labels can do great harm as well, & there are some labels that never should have seen the light of day. I am aware of the great fear of labels that the parents of school children live with. A good friend of mine successfully fought her daughter's being labelled ADD when she was in grade school- although, looking at her school career, I'm not sure if it really helped her daughter to do so. The great fear of labels is that they will brand a child as being different, difficult, & perhaps prevent them from progressing both academically & socially. I strongly suspect that the culture of individual communities & school systems are what truly determine how helpful a label is going to be. B is in a private school & receiving services from our city school district, so even though his school is using the labellling appropriately- to help children get what they need to learn, the culture of the school district is probably not so accepting.

For a while, C was receiving a glossy magazine called "Spectrum" at his office (he still has no idea how or why...). This magazine always featured a popular actor on the cover & was dedicated to publicising the needs & perspectives of parents with children on the autism Spectrum. I was always interested to note that, at least in the few issues we got, the popular figure on the cover did not have a family member or friend with autism, but was "interested" in helping the cause. Behind the gloss, though, I couldn't help but wonder what the cause really was... there were uncomfortably numerous references to discovering a "cure" for autism, & the ads for cruises to support the cause rather confused me. Now- I know only what my life with an autistic child is like. I suspect that if B had Kanners Syndrome, I might be looking desperately for a cure, too. But the articles in the mag did not seem to be about family's facing Kanners, they were upbeat stories about how their kids were still competing in sports, etc, etc. What finally put my tolerance over the edge was the mother who proudly (it seemed to me) declared that she had not shared her son's ASD diagnosis with him, so he would not be hampered by the label... !

When B was little, one of the child-rearing books we read explained the importance of helping children to name their feelings. So, when he was frustrated or angry, we'd say, "You look frustrated & angry." As he got older, it became, "Are you frustrated or angry?" In first grade, B's speech therapist did one session a month with his whole class, discussing & naming feelings (this gave me a comforting glow- knowing that other kids were benefitting from B's special needs :). The output from some of these sessions still hang on B's closet doors- two large thermometers labelled with positive & negative feelings, starting with calm/neutral at the bottom and working up in intensity. We use a similar system these days to help B label & cope with OCD thoughts, & thanks to the groundwork already laid-down it's a very useful system. Thanks to all of this work, B is known for having good & accurate insights into his own feelings & we feel confident that this is helping him in his learning of appropriate social behaviours as well. It seemed to me that sharing B's diagnoses with him, in an appropriate manner, are a continuation of this learning. Appropriate, meaning using language he can understand, building on knowledge he already has (or giving it to him in pieces so he gains the knowledge he needs), & using positive language to describe what's going with him. We went to Paula for a list of all the good things about having Aspergers & these have sustained B as he has struggled with the less positive aspects. When B developed Obsessive-Compulsive Disorder (OCD) nearly 2 years ago, & once the dust had settled a bit, we worked with his psychologist to discover ways for him to understand the OCD & talk about it. This is a continuing process, of course, but essential since self-talk is part of overcoming OCD. The Tourettes became a big player last summer, so C & I researched it not only from the perspective of our own comprehension, but so that we could help B understand what was happening to him when he had tics. We started by naming the tics, & when he seemed ready for more info, explained Tourettes to him. I can always tell when B has internalised & accepted these parts of himself because his play characters, whether bionicles or imaginary, develop these "disorders" (his word) as well, which happened within a week of the Tourette's explanation :). The outcome of this process has been impressive (yeah, I'm his mom, but I can still be impressed). We, of course, brought his teachers up to date before the school year began & planned strategies for classroom coping. Because the Tourettes is so noticeable, we began to gently encourage him to share this info with his classmates, either by allowing an expert to come in & talk to his class (not necessarily specifically about B) or to share it himself. He brushed it off at first. Although his class is wonderfully tolerant of human differences, some of the kids did question his behaviour, asking if he was doing it so he could leave the room, & some mimicked him. He was pretty indignant, so I reminded him that he could do something about it- he could educate his classmates & then they would know. I understood that the whole thing felt embarrassing to him & he just wished he didn't have to deal with it, but I also understood that this was something I couldn't really do for him. I believed he was old & mature enough to talk about himself, & not have me talk about him. This situation simmered under the surface with occasional ripples until late October when the school district decided to let B try an AlphaSmart portable mini-keyboard for his school work. Because B has to leave the room when the OCD or tics get overwhelming, his teachers had requested this device so that he could, essentially, do his schoolwork anywhere. It has worked beyond everyone's wildest dreams (& B has finally learned to touch-type -hooray!), but it had an unexpected side-effect. B felt he needed to explain to his classmates why he had the AlphaSmart. He made a tentative start, explaining Adpergers to some of the kids who were getting assistance in the special ed. resource room the day Alpha arrived, & who were there while he was learning to use it (ok- yes, he was preaching to the choir :). He was heartened by their response & asked his teachers for time at the end of the day to talk to both of the 3rd/4th grade classes. He asked me to come early so I could be with him. We sat in 2 small chairs while the kids sat at our feet (about 22 kids) & waited attentively for B to talk. And he did. I only bridged a couple of gaps when he didn't seem to have the words he needed. He told them about Aspergers, OCD, & Tourettes, entertained questions & comments, & received spontaneous applause at the end. He glowed. We adults in the room were definitely teary by the end- it was something to witness, my kid advocating for himself & speaking so knowledgeably & articulately about his differences.

The growing hasn't stopped, of course. We continue to explore the person that is B, within the framework of Aspergers, OCD, & Tourettes. What I have noticed lately is that he notices others around him who look & behave differently & then wants to understand them, too. He has become quite adept in spotting others with Aspergers :) I found him explaining Aspergers to the kids next door while playing in the snow a couple weeks ago... his dad & I reminded him gently that he needs to be sure that he only explains to people whom he knows will keep this information confidential, but I think that the embarassment factor is still real to him & he'll use good instincts. We're still here to help, should things go awry... but how nice to see him already on the road to self awareness!! It seems to have mirrored my own process of developing a sense of comfort with having an autistic child. I've been "out" for a few months now- that's my wrist in the picture above, & I wear the writstband every day. How can I be other than proud to be B's mother, & by extension, the mother of an autistic child?


At 11:11 PM, Blogger Zilari said...

Greetings! Hopefully you do not mind me commenting here. Thank you for your kind comments regarding my blog...I basically started writing it with the same mindset that I use for everything: the one in which I do something because it feels necessary to me, and if someone comes along and happens to find it interesting or useful, then that is something of a positive side effect.

I was actually diagnosed with ADHD as well when I was younger, and I do benefit to some extent from ADHD medication. It seems to help somewhat with "executive functioning" issues -- which in my case means that it assists me in breaking out of perseverative loops so that I am able to do various things that are important for work / daily living. I was also considered "socially delayed" prior to being diagnosed with AS (probably only because AS was not in the DSM when I was in elementary school) as well as "suffering from difficulties with prioritization". Nobody really knew what to do with me...I didn't have a formal IEP, but I was put in the gifted class one day a week, assigned to the Resource room (for LD kids) another day, and provided with extra homework reminders, additional teacher attention, and special notebooks that were supposed to help me keep things in order. Aside from that, I spent plenty of time out in the hallway for "talking back" (which actually meant, "taking everything literally to the point where the teachers couldn't believe I wasn't being rude"). My schooling was rather chaotic, looking back.

Like you, I don't think labels are necessarily is indeed a property of the environment in which the label is used. Certainly, an Asperger's label is better than a "rude" label, and having an appropriate diagnosis for a particular individual does provide a framework and common vocabulary for treating that individual in a manner than suits them better. Plus, humans employ the use of labels constantly. It doesn't mean you are judging or singling someone out by merely describing them somewhat accurately. I know I am short, skinny, and dark-haired, but none of these things define me 100%, and I'm not scared of having my personhood usurped by a single word. :)

At 10:47 AM, Blogger Lisa/Jedi said...

I most certainly do not mind your commenting here, shinyrobot. I am delighted to be not only spewing my ideas out into the world, but discussing them as well! I enjoy your perspective very much & plan to send your site's link to a friend & her college-bound son, who is B's favourite kid-sitter & fellow Aspergian. Thanks for taking the time to send your thoughts!


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