A Walk in Our Shoes: Autism in Acadiana
Autism Society of America Conference 2014
8/23/2014 3:00:33 PM
I was honored to attend the Autism Society of America's international conference this year. But not long after I returned, Vickie Nettles passed away unexpectedly. Since this blog is something that she I worked on together, I've been procrastinating on posting it. It's hard without her here. Her last words to me were that I should post the blog as is, it's great. So that's what I'm doing, Vickie, albeit delayed. It's important for me to share this information with our community and I know Vickie will be proud.

Wednesday: After a harrowing journey from Lafayette to Indianapolis that included an overnight layover in Dallas, I finally made it to the national Autism Society conference on Wednesday afternoon! Afraid that I’d miss the affiliate leaders’ meeting, I rushed to get there as soon as I checked into my hotel. I made it, with 30 minutes to spare! After the meeting, I wanted to stay and attend one of the last sessions, but I was starving and exhausted, so I made my way to the restaurant nearest to my hotel, a very nice sushi establishment called Makado.

Thursday: I meant to get up at 7am but neglected to hit "save” on the alarm I’d set on my phone (new phone, still learning to use – D’oh!) the night before and so woke up late and rushed to make it to the keynote speech with Temple Grandin. I rush to the information desk to inquire about the exact location and am given directions I don’t completely understand but try to follow anyway. I walk a big circle around the perimeter of the convention center floor where the conference is being held and find the room, but the door to enter is locked! AARGH!! Feeling a panic attack rise within my stomach, I keep walking and end up back where I started when it dawns on me what the instructions meant about having "to go through the exhibit hall” to reach the Grandin speech location. I am trying to fight my panic, talk my inner self down from the ledge, when I finally find it! The room is packed, standing or sitting on the floor room only at this point, and I plop down on the floor with my notebook, elated to have finally made it there at last.

Shortly after taking my seat, someone goes down right across from where I am sitting, from what I can only guess is a seizure. Several people are huddled around the girl, calmly speaking in hushed tones and one of them, probably the girl’s mother, is gently stroking the girl’s hair as she lay writhing on the floor. The EMTs arrive a few minutes later and after about a total of 30 minutes, the girl is able to stand up and walk away from the over-crowded auditorium. Now, I’ve seen people have seizures before, outside of an autism conference, and it’s never as calm and quiet as what I’d just witnessed. People always freak and there is loud talking, with an undeniable sense of urgency to end the scene. But here, at the keynote speech, the utter state of calm was amazing to me. No one yelled; no one rushed anyone else. Everyone helping the girl, including the girl herself, displayed unbelievable patience and calm during the entire scene. It was calming for me as well, after the impatience and frustration I’d experienced over the past couple of days.

But after Grandin’s speech was over, an enormous wave of exhaustion hits me. I am hypoglycemic as well, and without a protein packed breakfast, my blood pressure falls quick and hard. All I’d had as I rushed to make the keynote speech was a coffee and plain croissant. That mistake, coupled with the travel snafus of the past two days, culminate into a fistful of sand in my eyes. I feel like I need to lie down and eat at the same time, so I push myself down the stairs and out of the building into the fresh Indiana air. I walk back to my hotel, grab an apple from the courtesy bowl at reception, and take the elevator to my room where I fall into bed and sleep – hard – for the next four hours.

Friday: This was by far the best day of the conference for me since I was able to correctly set my alarm and attend 3 session panels back to back:
  1. "Social Impairment!?” NOT! The Role of Friendship and Mentoring in ASDs
  2. Speaking for Ourselves: Panel of Individuals with ASD
  3. Social and Personal Relationships: Women on the Autism Spectrum
The "Social Impairment?!” session was facilitated by Dena Gassner, with speakers Stephen Shore, Chloe Rothschild, Sondra K. Williams, Brian R. King, Brigid Rankowski, and Jennifer O’Toole – what an amazing panel of professionals! Emphasis was placed, as always, on the importance of time and attention. The patience of anyone, especially a mentor, is key. Also, seeing the child on the spectrum as an asset in a group rather than a liability is important for effectiveness of outcomes. We all have strengths and weaknesses, so it’s imperative that we focus on what they are good at instead of what they are not.

This perspective reminds me so much of where I always began with beginning writers in freshman composition when I was teaching academic writing and argument at the post-secondary level. I’d always begin by having them write three writing weaknesses and strengths down on paper. Then we’d share and discuss, and I’d inform them that awareness of these things is step number one. Self-awareness of these things allows you to play to your strengths while downplaying as you build up those weaknesses. I’ve always seen writing concepts as relative to most things in life and so it came as no surprise to me to find them also relevant to ASD spectrum issues.

In this panel, I was absolutely awed by all that Jennifer O’Toole has accomplished in only two short years: an Amazon best seller series called "Asperkids,” numerous awards and speaking engagements, and more I can’t recollect.

But something that Stephen Shore said stood out most poignantly for me: "Be the best you possible…or a poor imitation of someone else.” I’ve been studying and emulating "normal” behavior of others all my life and I’m trying hard to break this habit, with little idea of a concrete strategy for success. I spent my childhood with my head buried in books, studying characters and often repeating verbatim their words and thoughts when I experienced a situation in real life that seemed appropriate. This reminds of the way my sweet angel nephew Ethan, who has severe autism and recites entire scenes from Dora the Explorer and other of his favorite shows. The difference, it seems, is that because so few people read that they never knew that I was mocking, stealing my material from others I hoped to imitate in an attempt to appear neurotypical.

At the end of the session, a woman mentioned how a school she’d worked with was transformed with the inclusion of a book called "Secret Kindness Agents,” which carries an anti-bullying message. Check it out!

The next session included a panel of individuals who were all on the spectrum. Facilitated by Dr. Julie Donnelly, each of the speakers related their individual autism diagnosis story and experiences living life with the label.

David George was diagnosed late in life and spoke on his overcompensation which often led to being unfairly blamed for failing others’ expectations. My favorite quote from him: "Everyone deserves a real life.”

Beth Moreno is a brave woman who spoke openly about her own failures, like being fired from a job for her volatile temper. She feels that her autism doesn’t define her and identifies first and foremost as a musician and autistic 2nd, maybe even 3rd, saying, "Autism is not who I am.” Her emphasis, like that of Temple Grandin, was that special interests are key to success for the ASD individual.

James Williams filled in as a replacement on this panel for a no-show. He feels that person first language should be optional and that we should respect the differences of those on the spectrum. Of course sometimes "our passion can blind us.” Just because we share differently doesn’t mean that one is right and the other is wrong. Other people will "speak up for themselves differently.”

At the end of each session, there is a Q&A portion and until now, I’d allowed my crushing shyness to keep me silent. But after the amazing honesty of the panel, I had to stand up and announce myself as an individual on the ASD spectrum. Dr. Donnelly seemed surprised that I even stood to identify myself as such, which I used to begin with, "I know. Shocker, right?” I introduced myself, said where I am from, and admitted that my struggle is to know who I am since I hid my quirky difference for 30 years of my life. Afterward, a woman named Adrianne Williams approached me. She’s from Zachary, Louisiana, and wanted to connect with me since we are from the same area. Now, I feel like I haven’t been networking nearly enough because of my awkwardness and shyness, so I was ecstatic to have someone finally approach me!! Thank you, Adrianne. I will keep in touch and look forward to hearing from you.

The last session for the day was all about women on the spectrum and, to my surprise, we did have one dude in the audience. Of course, he didn’t say a word, but he was brave enough to attend! Kudos to him.

The 3rd session’s presenter was Sarah Hendrickx; she’s English and so I loved her from the moment she spoke. I love an accent! But then she began to tell her story and it was also mine in so many ways. Diagnosed late in life, a history of impulsiveness bordering on self-destructive, and over 30 jobs only to realize that the only person she could work for was herself. I was floored and convinced that we must be related. She began with facts and stats on women vs. men on the spectrum. Women are more often labeled crazy, given mental diagnoses rather than recognizing that it’s a neurological issue. Yep, that’s me, too!

ASD men are often described as the little professor whereas ASD women are described as the little psychologist, due to their "lifetime work of studying people.” I did this in books at first and still do. When it comes to employment, Hendrickx admitted that her principles often forced her to feel like she must just leave, not return once she felt someone committed some sort of ethical violation. I, too, have experienced the feeling of righteous indignation that led me to feel I owed an employer nothing, not my presence nor an explanation for why I would not be returning to work for them. And this happens all the time!!

But why does this happen? I don’t have the answer and I’d bet that Hendrickx doesn’t either, but that isn’t really the point. The point is that we are not alone in these experiences, we are not crazy, we are just different and we need to learn to share these experiences, comfort each other and help each other to move forward to better pastures.

According to Hendrickx, autism for women seems to get worse with age. Maybe it’s that they get tired of the façade, of the pretending to hold it all together. They become more awkward, and learn to embrace their awkwardness. She ended with what resonated with me most, "It’s all about self-acceptance.”


 

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