So, way back in December, my friend from CAPP, Patricia, told me that Autism Nova Scotia was having a conference March 2nd and 3rd, and she had managed to get Steve Silberman (the author of Neurotribes) as the keynote speaker (he was great, BTW). She also said that they were doing a panel of women autistics, and asked if I would like my name mentioned as a possible panelist. I said “Yes!”. 😉 (Who wouldn’t? Especially given I’m getting more into advocacy.)
Over the next two months various details got ironed out, and I was confirmed as a panelist, and very eager to go.
And I had a really great time.
(Note: Long – it covers a lot over the course of the two days! Also note there are pictures included.)
The first thing I’d like to do is thank the team at Autism Nova Scotia for all the work they did to get this conference together. Particularly Vicki Harvey, who as the Community Outreach Coordinator for Autism Nova Scotia was the one in charge of arranging the conference and getting the panelists. Not only was she wonderful to talk to, she was also remarkably helpful and willing to give us rides to and from the hotel (because St. John’s isn’t the only place in Canada with very steep hills downtown). So, thanks, Vicki! Your help was greatly appreciated!
It was wonderful to see Cynthia Carroll (the executive director of Autism Nova Scotia, who was also the chair of the CAPP Advisory Group) again, and part of my excitement about the trip was that I got to room with Patricia! We had a great time rooming together. (Would have been better if there hadn’t been so many issues with the room in the hotel, but still. It was great to be able to spend that time together, and we both found it easy to stay with each other.)
I flew in on Wednesday the 1st, in the afternoon. Caught a cab (and ouch, I’ve gotten too used to St. John’s, where the airport is maybe a twelve minute drive from my place) to the hotel, and met Patricia in the lobby (she’d gotten there just before I did). We headed up to the room (after hugs, because there have to be hugs!), and chatted as we went. Went out for dinner together, and had a great time with that. Crashed kind of late, and the sleep wasn’t the greatest (ref issues with the hotel room, and for me, the sheer excitement of what was coming).
The next morning, we headed down to the lobby and met Steve Silberman there, waiting for Vicki to pick him up to take him to the conference centre. As may be guessed by my comment above about how helpful Vicki was, she had no problem taking Patricia and I along as well. (We could have walked, but it would have taken a little while, and we were both still tired from the restless night.) While in the car, I mentioned the issue of the subtitle and what Patricia had told me the previous night about 300 pages being cut from the manuscript of Neurotribes, and he suggested that I ask that very question in the Q&A after his talk.
Got there, and got our packets, and I wandered into the conference room while Patricia was getting ready for her speech introducing Steve Silberman.
(Pictures of the two of us with Steve Silberman taken just before I headed off to the conference room.)
He gave a really great talk. Some of the info I already knew, given that I did read Neurotribes, and some was new. (And kind of not good.) And as he’d suggested in the car, when the Q&A started, I asked that question.
Turns out that Neurotribes was originally proposed as a 200-page book, that he thought would take about a year to research and write. Not so much. Five years later, he had an 800-page manuscript that he took to the publisher. They cut about 300 pages (as mentioned above), and what Steve said was that he thought it actually ended up better that way. For one main reason: He doesn’t feel that it’s his place to say what should be the future of neurodiversity; he feels that it’s the place of those who are neurodiverse to do that. It was an interesting answer, and put a different spin on my perception of the subtitle of the book. (And no, he’s not changing the subtitle.)
Next up was Mike Doucette, a police officer from Belleville, Ontario, who does autism training for police and other first responders, with a talk about Autism Risk and Safety Management Training. He has an autistic daughter, so this is personal for him. He explained the usual circumstances that involve police interacting with autistics (aggresive/domestic violence situations, suspicious person calls, and wandering), and came prepared with videos to illustrate the potential situations to us.
It was particularly interesting in that both Patricia and I (and it wouldn’t surprise me if some of the other autistic attendees as well) noticed a few things in the videos that the other people in the videos and at least some of the audience seemed to be oblivious to.
The video to illustrate some of the situations involved with domestic violence and aggression – every time the mother spoke, her (teenage or adult) child would hit his head and go, “Ow!” Patricia observed that it may have been something about the mother triggering a sensory issue, maybe even the sound of her voice. I didn’t link things up that directly, but to me it was still obvious that there was something the mother was missing that was causing him sensory issues.
The video where two cops responded to a suspicious person call involved an autistic who was mostly non-verbal – he could say some words, but they weren’t entirely clear (although I recognized what he said his name was, and I was surprised that the officer didn’t understand what he was saying). The one thing I noticed in this video – and I went over to the stage and brought it up to Officer Doucette afterwards (see below for his response) was that the officers (particularly the first officer who approached him) were firing questions at him without much of a pause. It was quite clear to me that the young man was having difficulty processing what they were saying, at least in part because they weren’t giving him the chance to understand before firing off another question. Try playing something at 2x or 4x speed – a recording of someone asking questions – and see if you can process what they say in time to answer the question before the next one is fired at you!
The answer Officer Doucette gave me was that while the issues with processing speed are mentioned in the training that he knows of, what often happens is that police (and other first responders) undergo so many courses of training about so many things, some apparently minor details can slip through the cracks, which is why they tend to have refresher courses. Which is understandable, but extremely unfortunate. The situation in that video would have gone much better if the two officers involved had slowed down their questions enough that the young man could have had the chance to actually answer them. (The situation ended peacefully, but it was still obviously quite upsetting for the young man.) Possible recommendation: give the processing issues more priority/emphasis during training. Maybe make a note to mention this as a likely issue to people setting up the training, so that can be touched on more.
The third video was of a child wandering. The situation after the wandering started was dealt with well, but… the start of the video, where the child was with an educational aide of some sort, made me… not terribly happy. The aide was talking to the child in question in what I took to be a rather patronizing fashion. Now, I have no idea of the circumstances surrounding said child, except that he is autistic, has no real recognition of danger, and is prone to wandering… but still.
The emphasis of first responders when it comes to situations is: Paramount: Officer and Citizen Safety; and secondarily: Making the Best Use of Time and Resources. (I’m grabbing these from the titles of the slides used, FYI, which is why the capitalization.) Officer Doucette strongly recommends a voluntary registry, shared with the first responders, so that they can have access to the necessary information. (He was impressed with my RNC Voluntary Autism Registry Card.)
One of the other things Officer Doucette shared with us, which was more positive and a great way to end the talk, was a setup for community days and class visits. The video in question showed firefighters and police officers bringing their vehicles to show the children, and letting them wander around, giving them the time necessary to be comfortable without pushing them, making the meeting a non-offensive situation. They also did things like show what firefighters look like dressed up in their safety gear. All this done in a quiet, relaxed atmosphere helps the children recognize the various kinds of first responders, and what they would look like – which will hopefully lead to much easier transactions between those autistics and the local first responders.
One thing that was recognized in the talk, that I appreciated very much, was that quite often any aggression would be because of sensory issues or meltdowns, and so beyond the autistic’s control in a lot of ways.
After that was lunch, which was served in the exhibitors’ hall. I ate lunch with the table I’d been sitting at for the presentations so far, and we got into a conversation about sensory issues and the reasons for stimming (most of which were extracted from things that I’ve already put up here on my blog).
After lunch was a presentation on Positive Behaviour Support (while Patricia and Steve Silberman were interviewed by CBC Radio for the Mainstreet Halifax program – podcast now up! Check out CBC Radio Interview: Patricia and Steve Silberman).
Positive Behaviour Support is a program designed to build skills and reduce “challenging” behaviours in autistic children. It’s based on a system of first of all, determining what the needs and priorities of the child, family, and team are; secondly, determining the function of challenging behaviours (AKA why they are happening and what the consequences/results of the behaviour are, rather than focusing on the behaviour itself); then coming up with a plan to handle both the long term goals (the desired behaviours) and the short term goals (replacement and alternate behaviours) which are the steps to go through in order to reach the long term goals. Then, the plan is put into play; everyone works together to carry out the plan; and last (but not least), assess whether the plan is actually working.
Some things the speakers (Caitlin Neilly, MASP, and Angela MacDonald, SLP) emphasized were: 1) This is not a quick fix. There are no quick fixes; 2) Autistic children are children first. In some ways, they are like any other child; 3) Humility is key to creating a workable plan; 4) Cooperation and support among the people involved is also key in creating a workable plan; and 5) Consider the “human factor”; concentrate on creating a workable, effective solution rather than “fixing the child”.
The PBS setup sounds quite interesting, and (as the name says) a much more positive means of discouraging certain behaviours and encouraging others than some therapies I’ve heard/read about. Of course, in a lot of ways, that can depend on what is chosen as “challenging behaviour”, but the definition of “challenging behaviour” that goes along with the plan seems to me to be a sound one: “Confusing and distressing to the people who care about them and themselves”.
They were also fairly clear on what may be behind said “challenging behaviours” for an autistic child, including high levels of anxiety, learning differences, difficulty understanding expectations, and difficulty communicating, to name some mentioned. (I also raised sensory issues at that point, to which they agreed – it just wasn’t listed on that particular slide.)
They also provided some examples of behaviours, including the functions thereof – 2 of which could actually be applied to any child, and 1 of which applied to adults (to illustrate that anyone can end up in and have situations like this). (If there’s interest, I’ll put the scenarios up.)
The last talk on Thursday was given by a woman named Jo-Lynn Fenton, who has two boys on the spectrum, one now 23 who was officially diagnosed with Asperger’s, and the other almost 20, who is non-verbal as well as having epilepsy. She told some stories about situations they’d ended up in, and it was a fascinating as well as quite positive experience. Her motto seems to be “perseverance and patience” – and “keep a sense of humour about things”, though that was more inferred from the stories than explicitly stated – and from what she’s said, it’s worked for her so far! I would honestly recommend her as a speaker anytime.
So, that was the conference the first day. After that was over, and I’d talked to a number of people while leaving, I headed out to meet my sister to go to her place for dinner. (Which was great. I wasn’t sure that we’d be able to get together while I was there, and I was delighted to have the chance.) Got to see my niece and nephews, and it was wonderful (even if the boys were a little overenthusiastic about some things I wasn’t up for *wry grin*).
Really did have a great time with them. And then I got a surprise – my sister’s best friend, her husband, and their younger son (I’ll Be Back Again) showed up! They were in fact the ones who drove me back to the hotel.
More wonderful hugs! 🙂 (I swear, autistics give the best hugs.)
Got back, managed to finally fix one of the issues with the hotel room(!), and actually slept fairly well that night.
So, Friday morning, I woke up and discovered that my sister had texted me that she’d be able to take me to the airport that night. (And believe me, it was a great relief; I didn’t want to have to take a cab – expensive! – and while I had the bus route, I don’t feel comfortable going on a bus system the first time alone.) Then Patricia and I kind of looked at our bags, looked at each other, and we decided to see if we could get late check-out.
Well. Late check-out would have dinged us $45 plus tax, and we would still have had to check out for 4:30. Given the conference was slated to end at 4, and there would be some tidying up and a bit more networking to do, that… wasn’t going to happen. So, once again, Vicki was nice enough to give us a ride to the conference centre. (After I called down to cancel the request for late check-out; we checked out before we left at 8:40, but given the troubles we’d been having, we didn’t want to take any chances.)
Our talk was the first thing on the schedule. There were four us; Patricia, myself, a young woman named Danielle, and another young woman named Jennifer. I was up last, so got to listen to the others talk first.
It was quite moving, and I’m really glad I was there to hear what they had to say.
And an interesting thing happened when Jennifer was giving her talk. She was having some trouble, so Cynthia offered to help her, and while that was happening, the tech at the back cut the glare of the lights focused at the stage. All of us relaxed at that, and Patricia at least found it much easier to speak. (Wish we’d thought of that beforehand!)
When it was my turn, I talked about some of my challenges and my passions, mentioned some things like the way I used to tell time to the second, and how my cats and my books and my writing had very much been my saving graces. (Pictures of the slides I used to illustrate some of my points below.)
Also mentioned something my sister told me the night before about her reaction to my reaction to the first time I was in a room where autistics were the majority (felt like I’d come home). Added to that about my sister’s friend’s son and how we clicked with each other.
I included my issues with keeping my environment clean and how I’d written fanfiction, both of which proved to be almost immediately impactful! (See below.)
When we’d finished, it was opened up for a Q&A. One of the first people to ask a question was a woman who had only recently been diagnosed, and she asked us how we’d responded to our own diagnoses. Both Danielle and I answered, and she teared up a bit. Danielle then asked if she wanted/needed a hug, and when she nodded, both Danielle and I got off the stage and went over to hug her. (I told you there were lots of hugs!) While we did that, Patricia pointed out that this, right here, gave lie to the belief that autistics have no empathy.
After the Q&A was over, when we were heading off the stage for break, another woman approached me, and told me that she had a child who’d been diagnosed, and she was starting to think that she was on the spectrum as well – and my mention of the issues I have with cleaning had resonated strongly with her, because she had the same sort of issue. We talked a bit about that, and I gave her the info about my clutter coach, and that April (said clutter coach – I know, I have to do a post on that too) might have contacts or at least know someone in Nova Scotia who can provide the same sort of services.
For the rest of the day, I was approached by a number of people at break and lunch who said that they had been moved by what I had said (and the rest of the panelists, of course). It felt really good. And one mother said that her daughter was really into fanfiction and manga and anime (ref my mention above about fanfic!) so I gave her my username on fanfiction.net and Archive of Our Own to give to her daughter.
The second talk of Friday was from Dr. Isabel Smith (the current holder of the Joan and Jack Craig Chair in Autism Research) about research being conducted locally (i.e. in Nova Scotia) about Autism Spectrum conditions. (The word disorders tended to be used by the professionals speaking, but as I’ve said before – Revamped Links: Neurodiversity Paradigm – I now prefer not to use that term.) It was interesting, but a bit disturbing to some of the autistics in the audience; especially a comment made around the Play Buddies program that the child in question was “playing like a normal boy” in the two-month followup. (And also the interaction after the explanation to the neurotypical boy about how to try to engage the autistic in play; the presenter mentioned how normal it appeared when the autistic kid was running around saying, “Tickle me!” Patricia remarked that it was not what people seemed to think it was; she identified it as sensory seeking, not “play”.) But there do appear to be good research programs out there, and some of the talk was absolutely fascinating. (Unfortunately, we didn’t get a copy of her slides the way we did with the Thursday presenters, so I can’t remember all the programs she talked about.)
Then we broke for lunch. FYI: The food court in Scotia Square in Halifax may have excellent food – but around lunchtime, it is a sensory nightmare for autistics. Too many people, and way too much noise. Patricia and I had gone with Martha, one of the Autism Nova Scotia staff members, as well as a mother and daughter who were attending the conference, and when she saw our reactions, she asked whether we should just buy something and eat back in the conference centre. I immediately responded that we should buy and go. As it happened, the woman who’d spoken with me after our panel had also come to eat at the Food Court, and she heard me say that, and joined us in braving the crowd and then going back. (She mentioned she was dreading going into the crowd, and then when she heard me say that, realized that she could do that as well.)
Throughout lunch (as I mentioned above), people came up to us and mentioned how much they’d enjoyed our panel, and how it had helped give them more insight. It was quite gratifying, and as touching as they seemed to have found our talk, I think it was equally touching how they let us know that.
I also got to chatting with Robyn, another staff member at Autism Nova Scotia who was sitting at our table, about science fiction; she’s a huge fan, and gave me some places to check out for when I hope to publish. (Thanks again, Robyn!)
The first talk after lunch was Cynthia Carroll’s review of the employment programs in place with Autism Nova Scotia.
The first one she told us about – and the primary one concentrated on during the talk – was TRAACE (Transition Readiness & Autism Community Employment). This was established by Autism Nova Scotia when they started getting people in their late twenties and thirties coming in, trying to seek employment when they had no idea how to go about doing it. There are programs for them, but ANS wanted to work on getting the information and skills regarding employment taught to people before they needed to enter the workforce, and so TRAACE was born.
It’s a program for youth aged 15 to 21, done in concert with high schools, to “prepare students for the transition from school to the workplace”. There are classroom modules (a total of 10 of them) followed by eight weeks of volunteer work placement with an employer partner and a Job Coach.
Some of the modules involve the things you see in any pre-employment program: job searching and resources, resume and cover letter writing, interview skills, workplace health and safety, all that. But TRAACE also includes modules on managing anxiety and how to request accomodations, sensory sensitivities and how to request accomodations, how to handle socialization in the workplace…. As soon as Cynthia was finished going through the list of modules, I raised my hand and announced that I was so jealous. I really could have used a lot of those! (Of course, even if there’d been that kind of program available, I might not have had access to it, given that I was a late diagnosis. But then, if this kind of program had been available when I was that age, people probably would have been better informed about autism at the time, and I might have had my diagnosis then!)
What’s interesting is that for the socialization in the workplace module, Autism Nova Scotia developed a game to help prepare their clients for dealing with that. If any of you have heard of Apples to Apples and/or Cards Against Humanity, it’s very much in that vein. Questions that clients have asked about social interactions – with colleagues, with customers, etc. – are printed on cards, and people take turns drawing them and reading them out. Everyone else writes out what they think is the best answer on a whiteboard (the game is used often enough – and popular enough – that they prefer to use whiteboards to index cards or paper), and they’re all placed face-down in front of the player who read the card. That player then turns them over and reads them out loud, and chooses what they think is the best/most appropriate answer, and the person whose answer it was gains a point. (This is definitely going to be something I’m going to recommend to the ASNL for their employment programs – and likely for Social Thinking as well, because it doesn’t have to just be for employment!)
At any rate, TRAACE has been successful enough since its inception that some of the schools are now also using it for their other students!
There were also other programs talked about. As they are federal programs, both Ready, Willing, and Able and Worktopia were mentioned. Interestingly enough, because Worktopia came into being after TRAACE, in Nova Scotia it’s broken down into three sections. There is CommunityWORKS Canada, which is an after school program for teens and young adults (15-21) in high school. There is EmploymentWORKS Canada, which is for young adults who are out of high school, up to age 29 (Worktopia is for ages 15 to 29). And there is SchoolWORKS Canada, which in Nova Scotia essentially helps fund TRAACE.
And there is Autism Works LaunchPad, which is an employment program aimed at adults. Much like with TRAACE, there are a set of modules that cover various elements of job seeking and maintaining, including professionalism, social skills, customer service, and financial literacy. What really fascinated me about this program is that Autism Nova Scotia has established a social enterprise in connection with LaunchPad, called The Promise of a Pearl. It’s a jewellery “store”, with the jewellery made by autistics and their friends and family. Participants in LaunchPad work with The Promise of a Pearl to learn things like working with a team to create products, fulfill orders, and interact with customers around craft shows.
Given I make jewellery (beading), I was fascinated. And it didn’t hurt that the thank you gifts for the speakers/panelists were products from The Promise of a Pearl – I got an absolutely lovely set of earrings with a tree set into a hoop. (See pictures below.)
This is something I fastened on to as a potential program for Newfoundland and Labrador as well, given the artisanship in this province, and I’m going to be asking the people in charge at Autism Nova Scotia all kinds of questions about how they set it up and how it works. I would love to get a pilot program like that here, so am determined to get moving on it!
The last talk of the day (and the conference) was about romantic relationships. The moderator was Dr. Shannon Johnson, and Danielle and another autistic named Danny joined her as panelists (although myself, Patricia, and another autistic whom I believe is staff at ANS kind of joined in with comments from the audience throughout). Danny is in a relationship with another autistic, and he talked a bit about what that was like. Danielle has had mostly allistic boyfriends, and talked mainly about the issues surrounding online meeting apps (mostly centred around Tinder, which is apparently the go-to dating app on Dalhousie campus), especially the safety issues, and how she determines whether a boyfriend is likely to last. (Hint: She mentions she’s autistic. If they change the subject or refuse to talk about it – she’s not going to see them again.) The three of us chimed in with a bit of our own experiences – my first date was when I was nineteen, and I figured out in the last few years that I’m somewhere on the asexual spectrum; Patricia’s been married for almost two and a half decades; and the other woman (I can’t remember her name – sorry about that!) has had a few boyfriends over the years.
I also brought up the fact that sensory issues can play a role in autistic sexuality (I seemed to be bringing up sensory issues a lot during this conference, but if you read through, you’ll notice that there was definitely stuff going on surrounding that throughout the two days). Given how frequently autistics can be either hypersensitive to touch or touch seeking – or gentle touch can be painful – I suspect that those issues play a huge role in how we handle sexual relationships.
One thing Danielle mentioned – and I was nodding my head furiously at this – was: Communication is key. If you can’t communicate, there’s no basis for a relationship. And communication is one of those things that can be very difficult for autistics and allistics. (Hells, it can be difficult between two neurotypicals, for that matter!) I’ve seen how important communication can be – I hold my parents’ relationship up as something of an ideal. Yeah, they argue sometimes – everyone does. But after a separation when I was a kid, they got back together… and one of the things they did to make sure they stayed together was every week, without fail, they had dinner out one night. Just the two of them. (Okay, if the weather was a disaster or one was sick, it was postponed… but they did that for decades. They still do. I think until they moved to Costa Rica, they missed maybe… three to five dinners while they were at home in Toronto?)
It was an excellent panel, I think, and a good end to the conference.
After the official end, Patricia and I both hung around for a while; there was some networking going on – I have a bunch of new contacts – and then getting things packed away. Because Vicki agreed to give me a lift back to the hotel, where my sister was going to pick me up to take me to the airport, I helped her load her car with some of the stuff that had to go back to the centre. (She thanked me for my patience while it was all getting done. I explained about having been staff and ConCom for Toronto Trek/Polaris for several years, so I knew about dealing with breaking things down after a convention/conference.)
Sat and relaxed in the hotel lobby while waiting for my sister. Didn’t end up getting any writing done, but I worked on recording my impressions of the day to help ensure I remembered the information for this post. (And ended up disconnecting the app I use from My Other Blog when it posted that private stuff twice without my realizing it. Thankfully it was only my mother who read it, and not anyone else!)
Had an enjoyable ride to the airport with my sister and niece (which was nice, because I hadn’t really got much of a chance to say goodbye to her the night before, since she was at Guides). Got all things done at the airport and set.
Note: If you need legroom, do not fly WestJet. They have worse legroom than Air Canada, which is really saying something. I’m 6’/184cm, and all my height is in my legs.
Dad was there to pick me up at the airport, and as he drove me home, I talked a bit about the conference, filling him in on some of the highlights (some of which appear above). What was interesting, though, was that I noticed twice while I was talking to him – once while driving, and once as I was getting out of the car at my apartment – my gestures, intonation, and word choice were pure Patricia.
And this is part of the reason it’s harder to diagnosis a girl on the spectrum who is verbal; we are excellent mimics, and quite often it’s completely unconscious on our part. I certainly didn’t intend to imitate Patricia – it just happened. It’s very much like how when my family visited St. John’s in the summers (since my mom’s family was here), I’d speak with a light Newfie accent for about two weeks back in Toronto before it disappeared again.
Took me a while to come down from the stress of the flight and the residual excitement of the conference, so my sleep schedule’s still somewhat wonky (one reason why this post was not up yesterday; even if I’d managed to finish it, I didn’t trust that it would be without issues).
But despite the issues with the hotel and the plane, I really did have a great time at the conference (as you can probably tell from my enthusiasm above). So once again, I want to thank Autism Nova Scotia for putting on such a wonderful conference and for inviting me there – and reiterate that I’ll be very glad to come speak at any other conferences you want to put on! 😉