Tales From An Autistic Family: It's Finally Here!

At this point it has been several months since I last managed a post. I was very busy with the Autism Rocks Symposium (website here). That is what I will write about today and I will save the other reason for the longer wait for my next post.

I spent months, along with my autism consultant, planning and worrying about the symposium. It has been hard on my health, because I struggle so much with my anxiety. I received my formal ‘in writing’ diagnosis of Ehlers Danlos from the dermatologist a month ago, based on my skin biopsy. Now I have to wait for my follow up genetics appointment to get the next steps, referrals, and to get Micah in for her official diagnosis. So, when I say the anxiety affects my health, it does so more than a typical person due to my other issues. I has caused my migraines, body pain, irritable bowel etc. to flare up badly.

So, was all the pain and sickness worth it? Definitely!

As far as I know, this was a first of its kind symposium for this area and from the comments I have heard, it was very well received. It was also sold out!

Many of our speakers were autistic and some, including me, were first time speakers. I was very anxious, as I said, leading up to the event. I wanted to make sure everything went perfectly. I was also doing many things that are very hard for me. I was regularly contacting the speakers, whom I was in charge of, for various things such as explaining their roles and making sure they understood my values (no functioning labels, including adults-depending on topic, remembering that there would be autistic people in the audience etc.). I had to find a venue and someone to run the A/V equipment, secure snacks and drinks, paper and crayons for the tables, make communication badges, and more. Even though much of the actual contact and some shopping was done through email and the internet, I was still very anxious. I still worry about what people will say and how to respond. Micah and I picked up two of our speakers at the airport and I had to be creative about my route and which garage I would park in because I was nervous about taking the 427 and 409. Shopping for snacks was a real struggle. I have a terrible time just making myself do grocery shopping for our family. It is sensory overload and there are people you have to either avoid interacting with or actually interact with.

Another thing I worried about was whether there would be enough ticket sales to cover costs. This symposium was put together pretty much on faith that people would see the value in listening to actual autistics and our allies instead of just more of the same--research and how horrible autism is so you have to do this or that to change us. We don't need to change; we need acceptance and support. My autism consultant was very supportive of this endeavor. She met with me to work on the plans many times, suggested a few speakers, and contacted those ones. Kerry’s Place overall was amazingly supportive of my project. From the number of times we were allowed to meet, to someone designing a professional flyer, to the number of people wanting to volunteer in various capacities before and during the event. Autism Ontario York Chapter also helped out with the venue and with registration.

It was a two full days symposium with great speakers representing various areas of the autism spectrum (speaking/non-speaking, needing more or less support) and a few non-autistic speakers too. We kept the ticket prices low so as many people could attend as possible. The audience had access to colour communication badges to show their preference for the amount of communication they were comfortable with. It was something very new for people around here but they did use them and they were respected. There was paper covering the tables and crayons and pens to use to doodle on it while listening. I think many people find it helps them concentrate. I know it helps me anyway! The audience was encouraged to walk or pace the edges of the room as needed and also to bring fidgets to use if they liked. I did some wandering and constantly held a fidget.

It was interesting that I was not nervous at all to speak. Usually, I can’t even speak one-on-one properly but when I did my speeches, other than a bit of stumbling over a few words, I had no problem. That is a very big thing for me. I was terrified to speak in school and I have trouble speaking to people individually or in groups. I looked at the paper the whole time I was speaking and it was okay. There was no pressure to make eye contact. I think it was largely due to the fact that we wanted it to be as much of an autistic friendly space as we could. Yes, there were a few glitches but the important part was that we encouraged acceptance of autistics and our needs. This was the safest place I have been, outside of my house. Another great thing about the symposium was meeting really great presenters, some I already knew and some I only knew on-line but finally got to meet in person.

I know people are expecting this to be an annual or biennial event. I would love to be able to say, yes, for sure. It’s not that easy though. I have to consider the effect of the stress on myself and my family. I would want some sort of sponsorship up front to provide great technical equipment, venue, and help with speaker fees. I think most things I would keep the same. We had a good variety of speakers and I would want future ones to also be mainly, if not all autistics, of varying abilities. There would also be some different topics. So, yes, I do want to do it again but right now I need a break. I want to do it again so that my fellow autistics, parents, and professionals can learn from the true experts- autistics themselves. Hearing from the true experts, those who are autistic, is very important especially for non-autistic parents bringing up autistic kids. We are different but don’t need to be fixed. We need help with our challenges but that doesn’t mean there is anything wrong with us. It is hard to go to typical conferences and hear about how horrible autism is and all the things we need to do to become more non-autistic looking.

If I manage to have a second symposium, hope to see you there!