Sunday, April 19, 2009

Essay: On Stepping off of the Autism Soapbox

Image: This is what the phones at WCMU in Mt. Pleasant looked like except the one I answered was dark brown and had a large red light covered with a white cage that stuck out on the right side of the telephone. The flashing light indicated when someone was on the other end of the line.

Autism is a topic near and dear to my heart. I have a ten year old son with ASD and and over the years have formed various opinions about nearly every sub-topic regarding this subject. No, I'm not going to quit blogging! This post is about how I temporarily and with great difficulty jumped off the soapbox last Thursday.

During that evening, I was one of three volunteers answering the telephones for our local public television station's program "Ask the Specialist." The topic of the evening was autism. Two guests appeared with a professional moderator who asked the questions.

The primary guest was a female 40-something psychologist with a doctorate degree from Midland, a Michigan city three dozen or so miles east of Mt. Pleasant. I had never met her before that night.

The second guest was a good friend of mine, the vice president of Autism Society of Michigan, the founder of an Asperger support group that meets in Ithaca, Michigan, and the treasurer of my group, Central Michigan Autism Society of America. (Yes, she really does all that all while having a full time job, and running a family which includes a teenage son with Asperger Syndrome.)

My experience volunteering at the television station was both fun and unfun at the same time. The fun part was being behind the scenes of a live television show. I liked seeing the female college students behind the cameras while knowing the older, male producer was actually in a gadget filled bus next to the building.

I liked checking out my surroundings. The set was simple, but professional looking with a dark blue background imprinted with the WCMU logo, a chair for the moderator, a coffee table with lamp, and a leather love seat for the two guests.

The unfun part was having to witness once again at how divided the autism community is about certain issues. It was also not fun not being able to argue against some of ideas that came forth. I disagreed with a few.

My job was not to spout opinions or beliefs, but to follow a provided script and write down the questions coming in from callers living in the Central and Northwest part of Michigan. I was also supposed to ask if callers were interested in an information packet and then write down their addresses. I don't know how I did it, but I did and yes, I am feeling relieved that I don't have to berate myself for offering up my unwelcome opinions.

Anyway, the need to stay away from my beloved soapbox was there the moment I stepped into the door of the television station. We met in a small conference room a half hour before the thirty-minute show began at 8 p.m. Since it was a professional setting, I dressed up a little bit, hoping to make a good impression as a representative of CMASA. The two guests sat closest to the female moderator while us telephone volunteers sat further down.

The moderator asked what the most relevant topics regarding autism were. After I few minutes I realized I was leaning forward ready to air my opinions. Once I was conscious of what I was doing (thankfully before I said anything) it occurred to me that the moderator really only wanted the opinions of her two guests. So I sat back in my chair and listened, pretty much in agreement with everything that was said at that time. I was being a good little volunteer, remembering exactly what I was supposed to do at that time.

Being a good volunteer, however, became somewhat difficult while listening to the questions being answered on air. When the psychologist answered a certain question that I thought deserved a much better answer, it was all I could do to avoid leaping out of my seat and onto the set. I noticed my friend, the ASM vice president, had also tensed up a bit in response to the answer, but unfortunately she didn't really get the opportunity to provide a better answer.

'No', I thought. 'It really isn't good to send a mom concerned about her two year old to a family doctor. The schools, or at least community mental health are the best places to go.' In Michigan there are still doctors that are not up to date and are more or less incapable of identifying autism. But there was nothing I could do. So I sat there waiting for the light of my phone to start blinking red.

I was at the third phone (the least busiest) so I only had about three or four calls. All but one of my requests were easy enough to handle. The real challenge for me came at the very end of the show when I had to grit my teeth and stay focused on the job. When the most irritating of the calls came, I realized there was a only minute left to go on the show (there was a guy holding up a placard), though I don't think the caller knew that.

The voice on the phone sounded like a young adult female, perhaps another mom. Despite sounding youthful, she also sounded pretty opinionated. "Please have them address the concern," she asked me , "that the mom concerned about her two year old should contact Wic and Early On " Because I agreed with her, I was more than happy to write that down despite the time issue. However, my feeling about her call changed when she requested that I relate another concern of hers. This was the concern that irritated me. Actually I think it was the tone she used (that of an expert) while she aired her concern that irritated me.

I cannot remember how she phrased it, but her tone was authoritative. She wanted me to let the specialists know that a study "proved" that vaccines caused autism. I wanted to tell her that not only was she calling too late, but that I read plenty of other studies "proving' both sides of the controversy. Instead I had to clinch my teeth shut and focus. I suppose I sounded strained, but am hoping I was polite enough--as should be expected from a volunteer. I wrote down her concern, assured her it would be handed over, and then asked her where she was from and if she wanted the information packet. She politely told me no she did not wish to receive a packet.

The runner from WCMU who was supposed to sift through the questions handed to her and give them to the moderator took my paper from me, looked at it but did not hand it to the questionner. So, if I weren't so diligently blogging about this now, this incident would have only been known by the two of us besides the actual caller.

I'm not sure why I was so irritated by the caller. It was probably the expert tone she used. But maybe, it was also because I was jealous that she was so obviously on the soapbox that I was trying so hard to stay away from. My point of this post is that, whether I liked it or not, this caller had a large part of influencing me to not feel good while completing my brief volunteer position. Instead, I left the television station feeling like the controversies (especially the vaccine issue) surrounding autism were and are choking the air--even here in Mt. Pleasant, Michigan.

I'm not sure I've mentioned this recently, but as a volunteer for the cause of autism I've become burned out. To keep my stress down, up until this point, I've avoided blogging about controversial topics such as vaccines. After last Thursday, however, I can no longer hold back and keep quiet. I'm running back to that soap box with a fury and a fire that seems to have re lit within me. That said, some of my future posts may be a little bit edgier than they have in the past although I still hope to bring critical thinking skills and the ability to look at issues from both sides to I also am intending to continue to write the neutral, friendly posts that have made up the bulk of my posts to date.

P.S. For those of you who are not quite sure what a soap box is, please check out this link. The two people answering the question at the Yahoo website did a great job explaining the meaning of the expression.


Chun Wong said...

Wow! That sounds like an exciting experience but I think I would have found it hard too not to voice my own opinions too. Feel free to get on your soap box now!

Casdok said...

Well done! Must have been so frustrating.

Cassavaugh Family said...

That experience would have my in thought for a long time. Even though I wish for the perfect world where we can all share and listen and learn from others opinions, I find that my heart rate can increase quickly when someone interprets a "study" differently than myself. The reason is when someone shares in a way that is I'm right and you are wrong it closes down opportunities. I would have felt just like you when that call came in.

Being married to a research scientist has made me more aware of what a "study" really says. Just because one study shows one thing doesn't mean another will show the exact opposite. There are so many factors and things to consider.

I think you are doing a great job with this blog and appreciate your insights!

Morgan said...

Wow, the doctor really said that they should go to their family doc? That would have got me going too. I'm finally getting to these posts. I'll keep reading before I comment any more.