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pasty
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24 Jan 2019, 2:38 pm

I saw that Alex Plank was speaking at an autism conference in my city, so I signed up to go. I knew it would be long and difficult, but I thought it would be tolerable, because actually autistic people would be there. However, it was barely tolerable. I had to leave at the lunch break due to migraine. There was so much perfume in that room. The acoustics were horrible. The lights were horrible. The lunch choices were extremely limited. There was no water. The agenda was general and failed to mention a group activity. It's as if the "experts" and "professionals" know little about autism. It was a disaster. So many assumptions were made. Then I had a communication attempt with the NT organizer that was such a failure that I can't stop wondering if she walked away mid-sentence as a hint for me to go home and never attempt communication with humans again. I hear and see so many people talking about acceptance and understanding of autistic people while simultaneously making the environment around them uncomfortable, unaccepting, and hazardous to autistic people. I am losing hope.



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24 Jan 2019, 3:05 pm

Did you get to see Alex Speak?

What you describe is disappointing but not surprising.
When #ActuallyAutistic do not have a say in organizing these conferences this is what happens. There are some conferences where this is starting to happen but not nearly enough.


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24 Jan 2019, 3:24 pm

My experiences with these conferences tend to feature non-autistic people explaining what it is like to be autistic and what autistic people need, in much the same way that "Mansplaining" occurs.

Most also were attended by small, but vocal groups of anti-vaxxers, curebies and a few angry people describing how one autistic person ruined his or her life.

And no "escape rooms" for the sensory-overloaded.



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24 Jan 2019, 3:43 pm

I think I went to one once. Temple Grandin was there and she talked about her childhood and used lot of pictures and people laughed and she had a good sense of humor. Tony Attwood on the other hand, he was very boring. All he talked about was AS and how it affects those with it and he seemed to have a narrow view of it like all aspies are math savants and a whiz at it, all aspies are so logical and he used graphs and stuff. I just left during the break and I was falling asleep anyway. He was very boring and I never liked that kind of stuff anyway. Not my style of learning. Now Temple kept me awake because she wasn't boring and it was fun to hear her talk about her life with autism.


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24 Jan 2019, 3:56 pm

Ive never went to any of these things because I despise large noisy crowds of people too. I'm sure some of those people meant well though.

And maybe that lady felt embaressed for making the event uncomfortable for somebody who's autistic when she was just trying to help? She might not have meant to be rude.



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24 Jan 2019, 4:05 pm

I wouldn't go to any autism-based event unless it fully included the voices of #ActuallyAutistic and treated them as equal.


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24 Jan 2019, 6:40 pm

It was my first time going to one of these and I did learn from the speakers. I wish I didn’t miss the part when Alex shows photos of his cars. Every time I raised my hand to ask a question, the woman in front of me assumed he was pointing at her to speak.



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25 Jan 2019, 2:09 am

pasty wrote:
I saw that Alex Plank was speaking at an autism conference in my city, so I signed up to go. I knew it would be long and difficult, but I thought it would be tolerable, because actually autistic people would be there. However, it was barely tolerable. I had to leave at the lunch break due to migraine. There was so much perfume in that room. The acoustics were horrible. The lights were horrible. The lunch choices were extremely limited. There was no water. The agenda was general and failed to mention a group activity. It's as if the "experts" and "professionals" know little about autism. It was a disaster. So many assumptions were made. Then I had a communication attempt with the NT organizer that was such a failure that I can't stop wondering if she walked away mid-sentence as a hint for me to go home and never attempt communication with humans again. I hear and see so many people talking about acceptance and understanding of autistic people while simultaneously making the environment around them uncomfortable, unaccepting, and hazardous to autistic people. I am losing hope.


I live about an hour and a half from where that conference was, and I was wanting to go when I heard about it. I'm glad I didn't go now after hearing it was like this... :/


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27 Jan 2019, 11:18 am

Curious, how much was the conference?

If it was below $50 to free, someone was sponsoring it/getting the venue donated, they don't have a ton of say.

I would write a letter to whoever hosted the seminar.

Would not write it in the vein of "I'm a person with Autsim, how could you guys fail so badly.", because honestly as an NT, almost all the issues you had I would have had. I bet many people had the same sensory problems as you.

I would suggest in your letter (and all of these are low cost doable for the venue)

Put on the next flyer/advertising this seminar is FRAGRANCE FREE. It probably won't cut down on hair products/laundry smells, but hopefully people will lay off of the spray stuff.

Let them know about the acoustics and lighting. If the venue was comped, they may have had no choice. Lighting, it is what it is, but no reason for cruddy audio.

About no water. Could you bring drinks in or an absolutely nothing in the seminar area? Many venues by me have a no beverage rule in the typical rows of chairs and a speaker on the podium room. If people brought in drinks, it is really frowned upon to have bottled water because that's considered horrible for the environment. BUT nothing stops the venue from having pitchers of water with ice cubes on a back table. Make that suggestion.

Limited food options. If you were looking for anything more than an American vegetarian concession, good luck. I'm guessing boxes sandwiches/chips/drink? Buffet style lunch with meat dish/pastas/salad/cooked veg? If you are needing GF/CF vegan option, that will not happen unless you call in advance.

If you have a need for Halal, Kosher, CF/CF, vegan, suggest the venue have a restaurant suggestion list. If you can't leave the venue, maybe set up an Uber Eats to get something brought in. Maybe the seminar can chip in for partial cost of a brought in meal. I have anaphylactic reactions to food. Sometimes I have to bring my food. Some seminars can not accommodate, and you just lump it.

Who was the seminar geared towards? General public? Autism educators? Professionals working in the Autism community? Group activities are are common in seminars geared towards that type of audience, and no one would have been surprised.

About the NT person blowing you off. She might have blown anyone off if she was running around putting off venue fires. Did you have a specific question to be addressed or a general gripe how miserable you were?
A specific question should have been addressed. A this seminar is a total dumpster fire complaint wasn't going to be addressed then. Nothing she could do about it at that moment in time. BUT she should have gracefully let you know that she heard what you said, and not blanked you.

I would put in something about having a sensory room with maybe a close circuit TV, so you could still benefit from the speakers. Maybe you just want a plain, quiet room to deescalate. Let them know.

Just because Alex, Temple or Tony are speaking, doesn't mean the venue is Spectrum Friendly. They usually get a speaker fee, that's how they make their bank. They are worrying about their stuff.

I find the worse seminars for accommodations are non profits and government sponsored ones because they run on a shoe string. Money is really tight. Things get donated (like meals and the seminar room). Food accommodations cost money. My sister sets up seminars for her company. People wanting a vegan food options starts cutting into the number who can attend. It's easier and cheaper to order trays from Subway.

I hope you do write a letter. If the people don't heard back, no way can they improve.

I went to a conference on asthma, and had to leave because the fragrance level was gagging. People are clueless.



pasty
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27 Jan 2019, 12:19 pm

Tawaki, the advertisements claimed it was "for parents, caregivers, teachers, those with ASD, faculty and professionals." Since we were included in the "for" list, I thought it would be suitable for us. The surprises involved were unbelievable. Until I experienced the entire event, I had no idea just how much information they failed to provide. The fact that they never considered that autistic people (and many NTs) require a lot of detailed information about what to expect was shocking. My guest and I did better on the 2nd day, after we figured out what all we needed and brought all of our supplies. We also left for lunch for proper food, but they cut the lunch break in half with 2 minutes notice, so we missed part of the conference because of that surprise.
I don't know why the NT walked away from me and then ignored me, but it was not because I was complaining. I always keep my complaints to myself. Complaining doesn't solve problems. It only makes people feel negative emotions, which then causes them to behave negatively. I just go through life accommodating for others and being mistreated mostly, because it's easier that way. Nobody wants to listen to a nag. I was telling her (not rambling-- I only spoke one sentence) about a group I'm forming for local autistic adults to meet and hang out-- something very relevant to her and that she would be interested in not just hearing, but also promoting. I emailed her my contact info and she replied with "thanks" so I'm still confused about what happened, therefore I have no idea how to prevent this in the future.
The lack of water made no sense to me because they had a table full of cases of sodas and big urns of coffee. There was no fountain nearby. There was no urn of water. There were no signs or instructions notifying us where water may be acquired. When the bottle I brought from home ran out, I had nowhere to refill it. This might seem petty to NTs, but it's a huge deal to me. Interoception is real. It is especially a big deal since dehydration triggers migraines. Being sensitive to caffeine and sugar (hypoglycemia), I was very disturbed that soda was my only choice. Had I been informed that this was the case, I could have prepared. Had I been informed of the lunch problem, I could have prepared. Had I been informed about the highly reflective tables and harsh lighting, I could have prepared. Had I been informed about the acoustics, I could have prepared. Luckily, I was informed 5 minutes in advance that there was a group project, so I left. But putting it on the schedule would have allowed me to schedule my time even better, making that a bathroom break during a less busy time. It's not so much that I expect an autism conference to be autism friendly as I expect an autism conference to provide enough information to allow me to make my own accommodations.
They provided a survey at the end of the event, which I filled out, so that we could offer suggestions for future events. They took up the surveys without allowing time for us to fill them out (some of us can't write at light speed legibly). Thankfully, I found the stack of surveys and put mine in there. One small thing could have improved the whole experience. They could have had autistic people audit them during the planning process. Maybe I should start a career as an event planning consultant.



pasty
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27 Jan 2019, 12:41 pm

Tawaki wrote:

I went to a conference on asthma, and had to leave because the fragrance level was gagging. People are clueless.



This is absolutely horrible. Their right to smell like chemicals is not as important as your right to actually breathe and stay alive. This reminds me of the Batman movie where Joker put toxins in the cosmetics and people had to stop wearing them.



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29 Jan 2019, 5:03 pm

This sounds like an absolutely standard conference experience. The one thing they did wrong was to advertise this conference was "for parents, caregivers, teachers, those with ASD, faculty and professionals." I'll tell you who the conference was really for: faculty and professionals, and maybe to a lesser extent caregivers and teachers.

I've never been to an autism conference but I've been to other kinds of conferences, including general psychology conferences. The seating, lighting, refreshments, etc. are always pretty much the same. The presentations are pitched toward professionals, and they are the ones that want to see the data, the graphs, etc. Then the real benefit they get from these conferences is the informal networking that goes on outside the presentations, over dinner or drinks.

The food is never very good, the seating is never very comfortable, etc. Venues sell a standard conference package and the people who arrange these conferences are not autism professionals, they are secretarial or administrative staff who work for autism professionals. To satisfy all the varied needs of people with varying degrees of autism as well as different knowledge levels as consumers would be absolutely impossible.

The take-home lesson should be don't go to these things, now that you know what they're like. Books, webinars, online forums, all will be more autism-friendly.


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30 Jan 2019, 11:40 am

Bea is right that conference was middle of the road standard stuff.

Depending on who sponsored the seminar, they may not even have an event planner. My sister works HR for a huge well known company. She is the event planner for local events. That is only part of her job. The planning could be been the Captain Picard "Make It So" from a higher up to the college intern who has no clue, who asked the crabby coworker what to do. Crabby coworker said get sandwiches from Pot Bellies, coffee urns from the venue, and so many print outs of the days schedule and group activity. Schedule venue for X amount of people. Then it's on the venue to set up tables etc. The person who is familiar with Autism needs maybe 3 people removed from setting this all up.

The devil is in the details. Sure the seminar was offered to caregivers and people on the spectrum. It didn't say the venue is spectrum friendly. Big different. Ask any parent looking for a camp that will take their Aspie child. Accomadating may mean we won't bounce your kid back home after two days to yes, we really work hard so your child is included.

This will almost always be a given at seminars: sh***y florescent lighting and crap food unless you call ahead about the food. Even that isn't a given about the food.

The water issue. My sister's company will not purchase BOTTLED water from indoor venue event like a seminar. It's because the water bottles aren't easily recyclable around here, and it looks like you are into killing the Planet. There was a 6 month discussion about this. That being said, there are always huge water urns/carafes/jugs which you can fill up your own water bottle or glasses. Soda cans are recycled around here, so that is why no push back. Tip for next time, ask one of the venue worker bees for water. If they are setting up coffee urns, there is water with ice somewhere. I only drink water and sometimes coffee. I always get my water.

In a seminar setting, depending "how important/has obligation to see the event is on track", what the person did to you is considered business polite. "Hi, I'm Tawaki. We are setting up a local Autism drop in center in Whoville, and am hoping to get it list in your next email, letter etc. I'll email you information." Thanks is about all I would expect unless it's during a meet and mingle session.

Now that person could be a jerk. It could be I'm talking to the wrong person who could handle my requested, or I flat out picked the wrong time to do it. Anyway, I would follow up the next day with the person via email or phone.

I've been to conferences that discussed issues regarding people with limited mobility, and the venue BARELY was ADA compliant. Everything from getting into the building, access to various things and bathrooms. The conference had people who were in power wheelchairs, struggling to get around. Awful. That's what happens when you make people who don't work the the client base plan stuff.

Next time call ahead. My sister always gets calls about their events, and she has no problems with people asking questions. You can always call the venue and find out access/lighting situation.

It really stink when something you've looked forward to falls short.



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04 Feb 2019, 11:50 pm

"Seminar".... eeeeehhhhhhhggggghhhhh



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18 Feb 2019, 1:44 pm

pasty wrote:
I knew it would be long and difficult, but I thought it would be tolerable, because actually autistic people would be there. However, it was barely tolerable. I had to leave at the lunch break due to migraine.
Perhaps you could try attending conferences which are organized by actually autistic people, especially for actually autistic people?
For example, AutSpace 2019 is organized by actually autistic people. It will take place this summer in Michigan. Actually autistic people will be coming from all over the USA to attend it:
https://sites.google.com/site/autspace2019/


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23 Mar 2019, 7:09 am

There's a big autism conference near me which is organised by autistics (supposedly) but when I look on the website

it gives no information about whether it is inside or out, is there food, what sort, can you leave to get food, can you

take food and drinks in, how many people are expected, how much space ect. ect. all the things I would want to

know. Ridiculous and frustrating.