Monthly Archives: November 2010
Two twelve-year-old female clients with AS and I met Temple Grandin at a conference yesterday. Their excitement was contagious. We all felt like we were meeting a celebrity – and we were. We arrived early, hoping for a celebrity sighting before her morning presentation. We were in luck. After an autographed book and a photo op, we sat down to listen to her speak. During the Q&A, we quietly murmured about who would ask the question we had planned. Not surprisingly, both girls were nervous, so I volunteered: “Do you have any advice on bullying?” She shared that schools needed to increase their involvement. When she finished speaking, we milled to the bathrooms and one of the girls and I discussed whether or not we wanted to talk to Temple about our manuscript. We weren’t getting out hopes up, but we figured it couldn’t hurt.
Away we went to ask Temple if she’d be interested in reading it. I did the talking. Temple shared that she was in great demand and needed to know how our proposed book was unique. So, I pitched Pookie’s story. Temple listened as she continued to autograph. I shared that Pookie and I are attempting to promote social skills for girls, who are desperately under-represented on the spectrum, using visual cartoon strips that documented social faux pas. Temple listened and began asking about Pookie’s special talents and suggested we utilize those skills into venues for socialization.
As Temple talked, my client stood next to me. I realized quickly that a collaboration between Pookie and Temple was not going to happen, but I began to worry. Temple’s tone was harsh. She wasn’t intending to sound abrasive, but her post-presentation anxiety, her stress from multi-tasking both talking and signing, and her social skills were all colliding. Temple’s “solutions” for Pookie’s struggles were expensive (enroll in specialized classes to cultivate her special interest) and appeared simple (if you attend classes of this type, then you can meet people who shared your interest, and, ultimately, make friends). I tried to play devil’s advocate to some of Temple’s ideas but realized this was not fair to either of us. It was especially not helpful to my client who was listening. When she walked away, I feared the damage was done.
When the conversation with Temple ended, I walked over to my client, who was talking quietly to her mother. “What happened?” her mother worriedly asked. I shared the facts but was interrupted, “She didn’t listen to Jeanne. It’s not that easy to solve our problems.” My biggest fear had come to fruition. They’d waited and waited and waited for that moment when they met the star of their dreams only to be disappointed and, perhaps worse, to be minimized and misunderstood. There was no time for damage control because the next presenter was scheduled in moments.
During this presentation, I was distracted, planning for how to explain what happened to two girls who needed hope, vote of confidence, and positivity. While these needs were not eradicated, they were slightly tarnished and dampened. As Jennifer McIlwee Myers, I watched the girls. They were laughing and smiling, nodding their heads, and listening. They “got” her because she “got” them. They shared Asperger’s Disorder, a unique disability hidden beneath a not-so-unique exterior.
Over lunch, we talked about both speakers and what we had learned. I realized that this moment was the moment to make a critical point. “Autism is a spectrum for a reason. Temple is one type. Jennifer is another. They both have challenges and experiences similar and different to you. You can learn from them just liked I learned from you.”
One Saturday a month, I take a group of middle school boys with Asperger’s Syndrome into the community. Our goals? A combination of community-based instruction, including skills like waiting in line to order your lunch, how to amend a mistake with your meal, and how to get a clerk’s attention, and socialization. Put simply: Plain ol’ hanging out on the weekend.
The reactions of the community members we come across are one of the most important components of our day. Unfortunately, as much as they present “teachable” moments, their reactions quickly and often rudely highlight skill deficits as “mistakes”.
Today, only two boys joined me at a local fast food restaurant for the first activity on our list. The boys and I have been on many an outing, so I hung back as we walked in to see how their behavior would fair. A small girl, about five-years-old, was standing at the register ordering a frozen treat. Her mother was about five feet behind her, waiting and watching. In essence, our situations were identical; we were waiting for the inexperienced to build self-confidence and competence under our watchful eye.
One of “my” boys cut in front of this young girl. “Mistake” #1. Calling his name, I garnered John’s attention, and he walked over to me. No surprise, he loudly shared that he was completely unaware of his error. He was not apologetic. He rejoined the line, behind her. After the little girl ordered, John loudly announced what he wanted — a mango smoothie and a large order of fries. I was pleased. He looked in the clerk’s general direction and spoke clearly and slowly. He dug his $20 bill out of his pocket and dumped it on the counter.
“Rude,” I heard the woman say. Apparently, Mistake #2. Ironically, I always remind the boys to hand their money to the cashier in case of this general reaction. John gathered his change and stood by me waiting for Mike. John began talking to me about his latest YuGiOh card addition. “Weird,” the woman muttered. I know John did not hear this comment, so I can only assume the quip was for my benefit. Mistake #3 is all on me.
I told the boys to get their drinks, preparing to educate this woman about AS. And how it means hyper-focusing, me-oriented behavior, poor volume control, poor perspective taking, intense interests. How her five-year-old can be, in some respects, on the same social plane as my two 13-year-old clients.
As I turned to her, the scene felt like slow motion. I ended up face to face with her. I looked down at her daughter and said, “Great job ordering your ice cream. I hope you enjoy it.” I walked away.
My mom would call my response, “Killing them with kindness”. As I sat down with the boys, I couldn’t help but feel like I had betrayed them. Like I missed an opportunity to inform an unknowing person about a hidden disability that is misunderstood in so many ways. The boys didn’t hear or see her reactions, in fact they were happily eating their burger, fries, and smoothies and talking about the movie we were scheduled to see. I felt like I was the only one to defend them and I took the high road. In the end, I rationalized that this outing was about the boys, having fun and learning. But, there is still a voice in my head that wonders if I made the right choice.
Now that there is some distance and time from November 1, 2010, Autistics Speak Day, I have had time to reflect and put the experience in context.
In many ways, #ASDay was really any other day. Each person who moderated (thank you to the @TheCoffeeKlatch for allowing me to do so) and who participated in the Tweet chat brought their thoughts, feelings, experiences, two cents, and expertise. For those who are on the spectrum (i.e. @TMBMT, @CorinaBecker, @Heather_Sedlock), #ASDay was a moment in the spotlight. Not the interrogation spotlight that makes your heart race and your body sweat. Rather, the sharing spotlight, the all-eyes-on-you and what you say because this is a time to learn.
While listening to those in spotlight, I was amazed to read many Aspies and auties continually reminding everyone that their personal experiences captured their perspective but did not speak for the entire community. As the old saying goes: If you’ve met one person on the spectrum, you’ve met one person on the spectrum.
I was amazed by this contextualizing of personal experiences because it allowed the space for all voices to be heard equally. When I think about the public persona of ASD (a topic I’ve mentioned in my blog post, “Keep Your Clothes on, Jenny; Autism is Better than That”), Temple Grandin is the most well-known person on the spectrum. Many NTs use her as the paradigm for all experiences with ASD. #ASDay was in direct contrast. I spoke to many individuals on the spectrum who shared their life’s story while knowing it was only representative of their particular color on the spectrum. In so doing, they encouraged me to seek out others and ask, beg, and plead for their opinions on a particular subject, too. Crudely, I could compare it to a chili cook-off: Taste all the flavors. But, don’t pick just one. Get all of the recipes and savor them all.
I can only imagine what this day meant to individuals on the spectrum. I felt like part of a larger community that was often silenced and misunderstood. I tweeted as an “autism specialist” and had my spectrum of knowledge broadened (pun intended), but this is a selfish perspective. Those individuals on the spectrum, who countered the idea of being silent for a day to increase awareness (Communication Shutdown), were the main characters. And they were gracious, well-intentioned, determined, and respectful. They shared their day-to-day experiences in ways that people take for granted and can’t even begin to fathom.
#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories.
I am glad I read a few pages.
Many of you have commented that auditory processing is another factor making phone conversations extremely challenging, pointing to distorted phone connections as a the major culprit. Because phones, both landline and mobile, are prone to these issues, people are used to the need for repetition. It’s not uncommon to hear people sarcastically scapegoat their mobile phone service provider (i.e. “Glad I’m paying my bill for such wonderful service, X company”).
While your auditory processing issues lead to anxiety and frustration , perhaps you can cope by knowing that others deal with these same feelings, if for different reasons. As such, here are some scripted phrases that can help you get the information you need in the smoothest manner possible.
1. “I”m having a hard time hearing you. Could you repeat that?”
2. “I think we have a bad phone connection. I missed what you just said.”
3. “My phone just cut out. The last words I heard were…..”
4. “I’m in a low service area. Sorry about that! What did you say?”
5. “Ugh. Once again, (phone company), helping me realize why I pay my bill each month. Anyways, I’m sorry I missed what you just said.”
Q: I frequently find myself explaining to new acquaintances what Asperger’s Syndrome is. Sometimes the reaction I get is, “I know an adult who is just like that,” or “that could be my sister.” Recently a woman told me that her adult daughter (a twenty-something) has struggled to bond with people all her life, and has narrow fields of interest. She said she’d only heard of Asperger’s Syndrome recently, and learning about it “explained so many things.”
She was torn over whether to recommend her daughter be screened but felt that it was too late and that her daughter would accuse her of meddling. What are the advantages of diagnosing someone with a disability when they’ve made it into adulthood without a diagnosis? Should I encourage them to be screened or can the diagnosis harm them?
A: My aunt — my namesake — has two daughters, one of whom has experienced significant challenges her entire life. She has been diagnosed with AD/HD, and there is a family history of bipolar disorder. On one hand, Katie is a junior in college; she drives, has a boyfriend, and has her own online jewelry business. On the other, Katie has lived at home for the past semester because she forgot to turn in her housing application. She has had three accidents, two of which were less than a quarter mile from her house. Her boyfriend who does not attend college is her sole friend. She spends several days on one piece of jewelry, which she sells at a price that is not time- or cost-effective. My aunt has called my mom more times than I can count to talk about the struggles of parenting a 20-year-old who is going on 12. Several years ago, I sent my aunt a copy of Tony Attwood’s Complete Guide to Asperger Syndrome. The shoe fit. But it is still in the box, collecting dust. Katie has Asperger Syndrome, but she doesn’t know it. My aunt is worried about the effects of such a disclosure on her self-esteem.
I will be honest; it is very difficult for me to listen to my mother recount my aunt’s travails. I feel like everyone is holding the key and doing nothing with it. I’ve made recommendations for therapists in her home state; I’ve offered to fly out in order to help in any way possible. Yes, I admit that not being a parent makes it hard for me to understand the grieving that is involved in obtaining and revealing a diagnosis that changes the life of a child, a parent, and a family. I sometimes seem obtuse, even insensitive, because I want to “get to work” and I don’t always provide the space to grieve. I’ve learned that without grieving, there is never acceptance. I’ve also learned without a diagnosis, there is no personal understanding and personal growth. There is no hope for change and, certainly, no change. There is much self-loathing, feelings of incompetence, and unexplained failures, which can lead to depression and fuel further anxiety. We know that depression and anxiety significantly affect the quality of life of individual on the spectrum; we also know that these co-morbid conditions can be treated with significant success.
For four months last year, I held a different version of the same key; I spun my wheels when there was work to be done. I lived with my body knowing something with was different. I explained it as a bruise, a tender spot, a temporary problem. When I reconciled my fear and my priorities, I had an evaluation that resulted in the removal of a growth from my breast. I personally learned the answers to the questions posed by this Q&A.
If a diagnosis explains “so many things” then how could it not be beneficial? Because that diagnosis is unknown and scary. How could a diagnosis that explains “so many things” be harmful? Isn’t it a badge of success to have made it to adulthood without the diagnosis and the assistance that a diagnosis can beget? Perhaps. What impelled me to be evaluated was not my own inertia. It was my loved ones. They knew what I could not, and they held my hand as I anxiously embarked into the unknown. We can do the same for those whom we think my have a spectrum disorder. Perhaps the process is different, we can suggest they peruse the spectrum literature in private for themselves, recommend a therapist, or e-mail a helpful link, but the result is the same: self-understanding.