Friday, June 16, 2017

A Zone With No Chill, Thinking Like Broadcast Sales Executives, and Vera

A sign that reads: "Take One
Table. Help Yourself.
Milestones Autism Conference"
Trigger/Content Warning (TW/CW): the following blog post contains mentions of use of functioning labels and ableism. Reader discretion is advised.

This is the second of two posts discussing about my experience at the 2017 Milestones Autism Conference.

Note: names and pronouns marked with an asterisk (*) were changed to protect their identity and/or gender.

I only attended one day of the conference (as of this post, the conference is going on its second and final day). And it was enough for me to attend just the one day (as I have other obligations to take care of today) because the conference in itself was overwhelming as fuck.

I arrive early to receive my nametag so that I can nom on the free continental breakfast provided. It was good, the baked goods and the various fruit juice options reminded me of my weekly Torah study class. As I finished eating, I decided to check out my first panel of the day, which discussed about success for "adults with ASD" (again, that person-first language); the focus: adulthood starts in preschool. While waiting for the panel to start, I noticed that my nametag only had my name, but all this extra blank space surrounding it, while other attendees had their titles and stuff added on to their nametags. I decided to fight fire with flint; I wrote down my title of blogger of TT&V and listed the website. If I'm going to make a name for my sorry dupiash, then I might as well start somewhere at this conference.

The panel speaker, who was also listed as a featured speaker for the conference, gave a presentation that, believe it or not, spoke to the audience of mostly neurotypical folks (where the speakers were only reduced to mentioning them as "typical" folks; I see you, conference managers) that they, the neurotypical folks, needed to change their viewpoints and thinking on autism, and not the other way around. For me, it was a refreshing thing to hear, as I was expecting to hear about how autistic folks can't do dickshit and what have you. After the panel ended, I walked up to the speaker and thanked him for his talk. He replied with, "Hey, I work for you guys." My kind of autistic ally.

Up next was an awards ceremony followed by a keynote speaker. I was not interested in that, as it was taking place in a large room with bright lighting and a bunch of moms who looked like they were ready to ask for a manager at any given moment. Nope. So while I skipped on that portion of the conference, I went walking around.

A "Chill Zone" inspection sheet, unmarked.
Photo by Robyn Bailey.
There were a couple of designated rooms for folks to take care of business that were not restrooms. One allowed nursing mothers to feed their children in private (I'm not really sure how well received that was). Another allowed caretakers of autistic folks to enjoy relaxing in massage chairs and do it yourself manicuring. And then there was "the Chill Zone," a room designated for autistic folks as a quiet sanctuary from all the hustle and bustle. Supposedly.

The "Chill Zone" room, featuring
a conference table and a water
cooler. Photo by Robyn Bailey.
Inside the Chill Zone was a small conference table, with a limited number of chairs, a nearly empty water cooler with the water having a hinted flavor of cardboard, and a table of various stim toys alongside an orange box of other stim toys and suckers (small rounded lollipops). There were numerous signs to not to take any items out of the Chill Zone. But those most damning feature of the Chill Zone was an inspection sheet to make sure the room was checked on. Not a single volunteer for the conference had initialed their presence on the inspection sheet when I visited the room. Throughout the day, I would return to the room, only to see that inspection sheet still not initialized by anyone.

After being annoyed enough, I, along with my companion and a young teen named Shannon*, went into the caretaker relaxation room. Hey, we are our own caretakers, you know, and we deserved to be pampered, too. The atmosphere was much more stress reducing, as my companion and Shannon would discuss about all things My Little Pony while I discussed about the politics of autism with a few mothers who worked on their fingernails.

I totally skipped the second portion of panels, simply because none of the topics peaked my interest. So I ended up staying in the vendor area, next to the food court where I enjoyed the free noms earlier in the day. I noshed on a cheeseburger and a Pepsi (and gave it back at a nearby latrine about 20 minutes later), while discussing about what I had seen so far, along with my companion and her new buddy. After lunch, I walked around the vendor area, seeing what kind of products for autistic folks were available. Between the bright fluorescent lights and the epic amounts of noise, the vendors did not disappoint my curiosity, heh.

A walkway with vendors on each side. The lights above show
how dangerously bright the vendor area was.
Photo by Robyn Bailey.
One of the first vendors I went up to had a program for autistic adults "on the low-functioning side," and that I was on the "high-functioning side." DUN dun DUNNNNNNNNNN. I told them* that I didn't like the functioning label system because it doesn't allow services and advancements for all autistic folks, simply because of a neurotypical perception of an autistic individual. And up with a brochure listing about why functioning labels were bad was my companion, who handed it to them. The look on the vendor's face was of quick and massive retreat.

Another vendor said that their stim toys were originally made for children, and hadn't really done anything for adults. My companion swooped in and was like: "OMG, they have these gnarly bracelets!" It had become apparent that the vendor had more than likely never interacted with autistic adults before.

Lack of autistic adult anything was probably the most disturbing theme I was picking up at the conference. While the push for more services and opportunities for adults was spoken of, only items of transition from grade school to college or vocational programming were taken very seriously. Nothing about autistic adults aged 30 and older. Nothing about services or programming for autistic seniors, as if they don't exist either. Neurotypical folks need to start thinking like broadcast sales executives by thinking long term, down the road solutions for their young autistic loved ones before the vocally dreaded "living in the parents' basement at 40-years old" issue comes about.

A table in the "Chill Zone" with
stim toys and an orange box.
Photo by Robyn Bailey.
That whole "parents' basement" terrorist campaign really made itself clear in the second panel I went to, which was part of the third round of sessions. The panel speaker was a local psychologist who also identified as a male Jew during his presentation. He wanted the audience to participate with having us pair up to discuss situations regarding autistic children and the challenges they were facing due to therapy approaches not working at home. At one point, he had asked what was missing from the equation.

I raised my hand and shouted (because I was sitting in the back) "Ego."

"Ego?" asked the speaker. "Explain 'ego'."

And I did. To paraphrase:

Ego is what keeps parents from accepting that their child is not going to be what they envisioned when they first learned they were expecting. Throughout generations and cultures, society was told of how to raise their children and what to do when children act "out of line", not once mentioning of what to do when they discover that their child may not grow up in the same mold as they did. Ego is what keeps parents from interacting with other people, regardless of family DNA, because of how they feel what other people think of them. Ego is what keeps parents thinking that they are the ones having to struggle with autism and not the autistic child themselves.

I don't remember how the speaker took my response (I do remember my response not being as long as I stated here), but he went around asking actual parents about what was missing from the scenario.

The other thing the speaker had warned the audience about was "electronic addiction." That it was "stupid" for autistic folks who are aged 40, still living at home, playing video games in their basement, because no reason was given for "these people" to go out and get a job and live on their own or in a group setting. Unless this guy was planning to take away all the AAC devices from folks who need them to communicate their needs to their caregivers, electronic social media is what allows autistic folks to essentially live without the barrage of daily neurotypical onslaught. The first panel speaker needed to teach this speaker a few things about how autism actually works.

Between that and some tasteless jokes the speaker shared ("one of the parents who had told me on what they do when their child has a public meltdown was to take them to the women's restroom because 'they had no cameras in there'"), it was clear to me that this speaker was what nightmares were made of.

Me, with my nametag and some pins.
After that panel was over, I spoke to the second panel speaker about my concerns and where he could find a plethora of blogs ran by actual autistic folks. I mentioned about teaching folks at my synagogue about autism, and that's where he had asked where my temple was. After I told him, he was trying to convince me to check out a different synagogue (one specifically by name) because of their supports.

Oh no, I am so not leaving my Fairmount. Nope.

Finally, I ended up going to my final panel for the day, meeting up with my companion sans Shannon, who had to leave with their* relative. The final panel discussed about how to understand autistic folks who also identified as transgender. This panel was more of a question and answer session, where a speaker would ask questions, and panel of people (a cis therapist and three trans* folks, one who openly identified also as autistic) would provide answers. The panelists were the best, giving clear and concise answers to each question given. Unfortunately for me, I was distracted for most of the talk because of one panelists had zir service dog with zim who kept whining and rustling about underneath the panel table.

My takeaway from the conference is this: it needs to be more autistic friendly, to demonstrate to neurotypical folks how autistic folks can interact, with the appropriate supports, in environments such as a conference. If it can be demonstrated in a setting of this magnitude, imagine what it can do in a school setting, a job setting, or in an independent living setting.

And as long as I'm not banned from the conference (or my rabbi doesn't pull me aside today to discuss "the things I mention in my blog posts"), I plan on returning next year to see if any changes have been implemented.

The autistic community (not the autism community) is watching you now.

1 comment:

  1. Yes, Vera, the magnitude of a conference. Something we experience once a year at most - unless in our trade or field.

    Thinking long-term: I think Milestones will either fold or accommodate.

    That was a really good talk about EGO.

    I would have said "agency" was missing.

    I am reading these great self-help books by Simeon Lindstrom at the moment [because of Instafreebie].

    Yes - there's a difference between working FOR people and working with them. I think this ally does what autistic people have said they want too.

    "Adulthood starts in preschool" - well, there's a variety of ways you can take that emphasis.

    Good to have that Torah sort of noms!

    There are similar chill zones in some shopping centres in Australia which the peak body contributed to.

    Thank you, companion, for the brochure! Sometimes we do need it said in dot points. [Did you use material from the Ed Wiley Neurodiversity Library? What about PACLA or Respectfully Connected?]

    I liked how you slowed down the terrorism into the middle of the post.

    So I've noticed the check times for the Chill Zone and its volunteers. Done really well it can be a peer space of people being themselves together. Like in Jim Sinclair's Being Autistic Together.

    "Nothing about services or programming for autistic seniors, as if they don't exist either." Grrr. IMFAR had some good things. Are there any special interest groups involved?

    And video gaming for seniors - is really growing.

    I suppose vocational programming covered the rest.

    And that synagogue trying to poach you? Not really cool. I do see in various synagogues' newsletters things which are done.

    I wonder if other people have written about the trans* panel?

    The momagers!