I attended the AANE conference Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles, yesterday, and it was fantastic. I wanted to live tweet it, but it was almost too much to process, even without the distraction of Twitter, so here’s my recap. For the record, I’m super-saturated and exhausted from an entire day of sitting still in an auditorium seat that really messed up my back, but I definitely want to recap this before it fades from memory. I have a notebook full of notes, as well. It’ll take a while to integrate it all.
What: Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles. A conference for parents and professionals who want to learn better how to understand and work with women on the autism spectrum. That’s how they billed it, but there were a number of autistic women there, and I think we got a lot out of it.
When: Friday March 3, 2017, 8:30-4:30
Where: Newton-Wellesley Hospital
Overall, the conference was fantastic. It was packed with great info and great speakers. The day led off with Will Mandy, who talked about late-diagnosed women and the female phenotype in autism, and he hit on some critical points that are part of the very limited though emerging research. He also referenced his open access paper that he wrote with Robyn Steward and Sarah Bargiela.
He also talked about the overlap between autism and anorexia nervosa, and I thought he made some excellent points. A lot of the audience members seemed completely new to the whole idea that women might ever be denied an autism diagnosis. They also seemed quite alarmed at how frequently autistic woman are diagnosed with personality disorders and how our underlying autism is often
masked overlooked / ignored / denied by mental health providers because we fit a more easily understandable profile for some other psychiatric condition.
I heard a lot of whispering and side talk during his discussions of providers habitually mistaking autism for something else – borderline personality, depression, etc. So that was very hopeful. It’s hard to say exactly how many of the clinicians in the audience are going to take away this information and actually do something with it, but it’s clear that there is a need and an interest — an appetite if you will — for precisely this sort of information.
My one criticism of his talk, was that the volume was a little low, and also the writing of the slides were pretty small, which made them difficult to read. That wasn’t his doing — it was more the setup by the conference itself.
The second speaker with Sarah Hendrickx, who did a fantastic job talking about autism in women and girls. Her material covered the social world of girls – how we can mimic and copy, be “little psychologists”, and appear “shy”, when we’re really just trying to figure things out. She talked about our peer relationships, imagination, our favored activities, and a ton of other stuff that I’m too tired to discuss right now.
She spoke from her own personal experience, and she did just a wonderful job of keeping the audience engaged, entertained, and ultimately becoming far better informed than they probably started out with. She was hilarious. I had no idea, when I went in, just what a pistol she is, but she had us laughing on and off the entire time, interspersed with some really great information and insights about women on the spectrum.
I’m sure others took away a lot of great stuff from her talk — including a really comprehensive and personalized explanation of some really key points. For me the real power was seeing someone articulate so, so well a variety of aspects of the autistic woman’s life that don’t often get brought out into the light of day. I actually got to meet Sarah before she went on, and it was great chatting with her.
In terms of criticism, again, the images of the slides were small and hard to read, and I think that it would have been helpful to have some takeaway items – like URLs that people can go to, or a list of resources the people can turn to, to build on what she delivered. She did have a link to her website, which is good. It would also be helpful to have additional resources listed that support what she teaches and gives people somewhere to go afterwards for more. .
It was seriously good stuff, and again, I worry that all of the enthusiastic audience members who were so engaged during her talk will go away and either forget half of what they heard, or return to their standard-issue neurotypical world, and forget how much all of this really matters to so many of us.
I remain consistently concerned about the capacity, even the interest, of the neurotypical healthcare world for deepening and sustaining their working knowledge of autism also. What they have is typically insufficient to help people like me. There is so much to be done, and there is so much opportunity, and there is also so much information available, but neurotypical healthcare providers aren’t necessarily up for the rigor and the challenge of developing (and sustaining) an exhaustive foundation of information about autism to work from. So, we end up with things like autism $peaks being the voices that they turn to.
And that’s just fucking depressing.
The third speaker was Liane Holliday Willey, and again her talk was really excellent. I think that her talk was probably the most challenging one of all, because she was talking about vulnerabilities and risks for women and girls on the spectrum. It was definitely not easy to listen to, hearing about all the ways that we are vulnerable, and relating to so much of it.
She shared a good deal of personal information that made the case excruciatingly well for how vulnerable autistic girls and full-grown women can be. She also really illustrated how autism continues to carry its risks for women as they age. She talked about regressing, about her difficulties becoming even more challenging as she ages, and she talked about how recurring traumas – which are just part and parcel of life in the world – have an increasing impact on women as they age.
I think that her talk was definitely the most demanding one of the day, and a lot of people seemed really uncomfortable with what she was talking about. A bunch of people left at the end of her talk. I think they were maxed out – which is a shame, because they missed the piece on Mothers and Daughters. But she was talking about risk and vulnerability, so hello, it is going to be uncomfortable, and it is going to make people squirm when they actually grasp the true nature of our situation.
At the same time, she was also hilarious. I think part of what kept people so engaged, was it she talked about experiences that people might not normally expect a grown woman to talk about – difficulties with executive functioning, impulse control, social interactions, and so forth. Come to think of it, Sarah also talked about her executive function difficulties and her social difficulties, which I think was a real eye-opener for some of the audience members. Here, you have two grown women, professionally accomplished and respected in their fields, and both of them report intense struggles with things that most neurotypical people just take for granted – things like giving the airline attendant the right ticket, or finding ways to interact with other parents that don’t involve the words “I hate you”.
After Liane finished her talk, which went over time by a few minutes, another speaker talked about the dynamics between mothers and daughters.
This talk, I think, appealed the least to me. It may have been more impactful for me, if I were a parent, but then again I am a daughter with a mother, and mother-daughter relationships on the spectrum do affect me very personally. I think that the woman presenting may have been a little new to doing that. I believe she is a social worker who works with parents at AANE, but I’m not sure that she has done a lot of public presentations about this topic. I think it was a good start, and that something that she should definitely expand upon. A more lasered approach would be helpful. It seemed like she was trying to cover a lot of ground in an hour.
I got the impression that she was a bit intimidated by the field of other speakers who preceded her, and that may have affected her approach. She seemed very nervous, and indeed Sarah and Liane were also reportedly very nervous. But Sarah and Liane have been doing this for a long time, so they’ve figured out how to work with it.
I think that there is a huge potential in this subject of mothers and daughters on the autism spectrum, especially because so many mothers actually are autistic, and their own mothers may have also been autistic – although undiagnosed. There’s a strong genetic component to it, which is often matriarchal, so I think there’s a huge need to really look at that. In thinking about what contributed to or detracted from the mother-daughter talk, what made it potentially powerful was also what made it problematic – that is, it was a very personal subject for the speaker, who talked about her own challenges with her autistic daughter. I think she may have had some difficulty separating out her own personal experience from the larger subject. In any case, it was a needed topic, and it was a good starting point for future exploration.
Additional Note: One really fantastic part of the Mothers-Daughters segment was that there was about 30 minutes left for audience interaction. The speaker opened up the floor to autistic women and girls to speak up about their experiences, what could help parents, what could help other autistic girls/women, and there was some great back-and-forth. I’m just sorry that the woman sitting next to me (who has an autistic daughter) left before that last session.
Another component of the conference was a series personal accounts which were read by autistic women between the main sessions. There were six different personal accounts, lasting about 5 to 10 minutes each, that were read between the speakers and the breaks. I knew a couple of the women who presented, and they did a great job. It was a really great addition to the event, because it really personalized a challenging subject, and I felt AANE did an excellent job at selecting the speakers. There were 26-some vignettes submitted, I believe, but only 6 were selected.
There was good variety between all of the speakers in terms of age and class and also gender identity. There were young women, there were middle aged women, and there were a couple of older women who spoke about their experiences. It would have been nice if there’d been more ethnic variety, as well. Everybody was white (which isn’t uncommon in New England), but it would be nice to have more racial diversity at these events. There were a handful of African-American women there, which was encouraging. Not sure about Latinx or Asians or Native folks. It was really great to hear them, and I believe ANNE will be putting out a book of all the collected stories in the future.
On the whole, I give the conference a grade of A-. The speakers were excellent, the subject matter was excellent, and since the auditorium was full – in some cases people were sitting on the floor because they couldn’t easily get to an open seat – there is clearly an appetite for this topic. There is also obviously a deep and profound need for this kind of information. My chief regret, is that this doesn’t happen on a more frequent basis, because there is so much critical information that needs to get out there, and once a year – or however frequently they organize these conferences – is not nearly often enough to keep professionals up-to-speed with the basics, and also to keep pace with the evolving research landscape.
Another criticism that I have of the conference, is that while they did have slides of the presenters, there didn’t seem to be a lot of other takeaway resources for people. It seemed like a lot of promotional stuff for AANE, which I understand. But general support stuff? I didn’t see a lot.
Then again, to be fair, I didn’t explore that extensively. There were some information tables out in the foyer, but I couldn’t wade into the throngs that were teaming around them, it was just too much. The gathering space is small, some people were talking very loudly, and there were people wearing scent and being more outgoing than I would have liked. I literally couldn’t see or hear properly, from the overwhelm. I started to shut down in that bright, busy space, even at the start — after driving in on the Mass Pike during rush hour traffic and wandering through the hospital searching for the venue. By the time I got there, I was already feeling maxed out. New experience, new place, unfamiliar… everything. Mix and mingle and chat with people at info tables? No thank you…
So, I did feel a sense of lack, in terms of takeaway information. Give me a tearsheet, a list, a piece of paper with URLs. They could definitely improve this by providing printed resource lists, references for future study, and other supporting information. Additionally, it would have been nice if they had mentioned artistic blogs and Twitter and autism-related social media in general as a resource for professionals to better understand. Sarah Hendrickx did mention autistic blogs and Twitter at one point (I couldn’t resist clapping and yelling “Yeah! Woo hoo!” from the back of the room). But I think folks in general really miss the treasure trove of info that can be found here, when it comes to autism and women.
Of course, mental health professionals aren’t necessarily going to dig as deeply into autism and women as they really should, or seek to understand it as well as they really need to. Getting paid to listen to people process their issues all day can’t possibly be restorative and invigorating. I would imagine you need a fair amount of downtime when you’re in that line of work. The same goes for doctors and other clinicians. There’s just so much suffering in the world, and who’s going to invest an “autistic-grade” number of hours and lasered intensity, researching and coming to better understand our situation, in order to help us? When organizations like autism $peaks provide easy resources and simple tear sheets that people can “consume” very easily at a glance, that’s what gets noticed, picked up, referenced.
God help us.
Some of the other challenges that brought my conference “grade” down:
- The gathering space was not very autism friendly at all. It was bright and crowded and confusing. I didn’t see any clear signs telling me where I could go to take a break. They mentioned break rooms briefly at the beginning, where you could get out of the auditorium and watch the presentations on a monitor, and I think they were shown on the printed map they gave us. But when I got outside the auditorium, the gathering space was so full of people milling around with all of their perfumes and conversational noise, I couldn’t properly see or hear or figure out where to go, so I turned around and went back inside to the darkened auditorium. The environment was so challenging, I couldn’t take advantage of the breakout rooms. It was easier to not even try.
- Also, scents. What is it with the aftershave? What is it with the perfume? I had to change seats once at the beginning, because the people around me were so heavily perfumed. And then the second place that I sat – in the back – also had people around me wearing perfume. I think the main culprit was a guy wearing aftershave or cologne in the row in front of me. He seemed to be with a small group of teachers, and if he works with autistic kids and he wears that kind of cologne, I’d expect any scent-sensitive autistic child to rapidly become a behavior challenge in his presence. It was so obnoxious I can’t even begin to say. And this at an autism event. What the hell, people? What the hell?
- The event also seemed geared very much towards professionals and parents, and less towards autistic folks. I sometimes get that sense about AANE, to begin with. It’s not a criticism, rather an observation. I think there is opportunity for them to become more autism-friendly themselves, and make their own space and their events less neurotypical-centric, but I’m just an outsider, a bystander, an attendee to a relatively small number of their offerings on a semi-regular basis. Maybe if they oriented their offerings more towards autistic adults like myself, I’d attend more. Then again, they are an hour and a half from my home (in normal traffic), and the events are often at night after a long and depleting day, so that puts them out of reach.
- Additionally, I was a bit irked by all the “person-first” language. A lot of people talked about “women with autism”, “girls with autism”, “people with autism”. There was some talk about “autistic women/girls”, but “autistic identity” language was in the minority. A word cloud of all the talks probably would show it better, but I don’t have transcripts, so you’ll just have to take my word for it.
All that notwithstanding, it was a great use of time. And it was such a relief to not have to mask & camouflage all day. I was pretty tired by the end of it, but I can’t believe how NOT mentally / emotionally drained I was, yesterday. I actually felt invigorated, although weary. I haven’t felt that way in a long, long time. Huh — so that’s how it feels to actually get to be yourself all day long…
The biggest bonus of the day was that I met three awesome neurodiverse women — one who has an autistic child (and I think maybe other members of her family) and is wondering about herself… and two others who are late-diagnosed like myself, one of whom I “know” from Twitter and the blogosphere Eclectic Autistic. It was great to meet her in person! We both found out each others’ real names 🙂 The four of us had lunch together and traded contact details, and at the end of the day, we “peeled off” to get our super-saturated brains home safely. I look forward to staying in touch — we (of course) had tons in common, and it was fantastic to actually be able to interact with “our tribe”. Fun!
All in all, I’m really, really glad I went. A double bonus was that the family medical issues I’ve been having for the past week and half got sorted out the day before the conference(!), so even though I’m pretty wiped out from that ordeal, I didn’t have to sit there apprehensively (and distractedly) in the auditorium waiting for “the call” — i.e., bad news from the doctors. So I got to actually pay attention and be fully present through the entire event. Bonus!
Whatever my criticisms, it was a great conference, and I’d be back there in a heartbeat.