How not to do an autism conference


Reflections on the NAS Autism and Mental Health conference 2017

It’s now two days since I attended the National Autistic Society’s ‘Autism and Mental Health’ conference at the Hilton in Reading. The event was attended by around 400 people and starred Tony Attwood and Wenn Lawson alongside other speakers. I was really looking forward to learning more about autistic mental health, but came away disappointed on many levels. Here’s why:

The venue was easy to get to and I arrived early as the pre-conference documentation indicated that parking was limited and that the alternative was parking further away and getting a bus. I struggle to use buses, they make me very anxious and to get through the day I needed to do as much as possible to reduce the avoidable anxieties.

  • Please consider using venues with sufficient parking.

The conference was held on the ground floor of the hotel, but it was poorly laid out and with insufficient signage. The bulk of the space was shared with other hotel users and it was not clear how to use the space. Hot drink preparation areas were at one end of a vast reception area and the only available seating was in the hotel bar at the other end.

  • Please consider providing layout plans.
  • Please consider delegates who have mobility and coordination difficulties.

Toilets, drinks and food all resulted in huge queues. Some queuing is inevitable at large events but this was unacceptable. The lunch queues were ridiculous and completely took over the space, making it easy to become overwhelmed and trapped. I suspected this might happen and got to lunch early, but was disappointed again at lack of signposting/labelling. It wasn’t clear what was available as food was spread across two spaces. Sandwiches were not labelled and many contained unidentified beige lumps in unidentified beige gloop. I was glad I’d brought snacks with me.

  • Please consider an alternative quiet area for lunch for your autistic/disabled delegates.
  • Please provide clear instructions about food arrangements. Providing a menu in advance would be helpful so we know what to expect.
  • Please provide food near the seating area, ideally with proper height dining tables, to support delegates with mobility and coordination difficulties.
  • Please choose a venue with more toilets and lunch logistics.

In the main conference room seats were tightly packed and with little space. Like many autistic people, I struggle with proximity to other people, have a need to move/fidget and often need to leave mid-way for the toilet, for some space, a break and to unwind for a bit before returning. I did ask to sit at the back near the door when I arrived, but having to explain a need for a particular seat (or any other adjustment) in front of others is never very dignified. I also had no way of reserving a suitable seat and struggled in later sessions to find suitable space.

  • Please consider creating priority seating for autistic/disabled delegates to meet our needs.

I was astonished that the NAS staff used a bell to encourage everyone to move onto the next session. It’s Autism 101 that many of us have sensory sensitivities so this was horrific, it was only years of conditioning that stopped me covering my ears and swearing at the bell-ringer. The organisers knew that there were autistic delegates (and at least one autistic speaker), but did this anyway. It was shockingly insensitive and very poor modelling of good practice… As always at these events, I was surprised how many delegates were heavily perfumed and I do hope they refrain from this in their day jobs.

  • Please consider your delegates’ sensory issues and please ask your non-autistic delegates to respect this too.

There was a quiet room provided which I eventually found, and while it was useful while I had it to myself, there were no guidelines on how to use it when sharing the space. I didn’t know if quiet meant silent, whether it was ok to to eat or drink in there, if ignoring other people in there was expected or rude. I abandoned it when the ambiguity made it more stressful being there than not.

  • Please provide some guidance on the use of the quiet room.

Providing a quiet room is not enough to ameliorate the challenges of the conference for autistic/disabled delegates. More thought needs to go into making the whole event inclusive and making adjustments and supports intrinsic. The NAS should be leading the field in this, modelling good autism practice in everything it does.

  • Please seek guidance from autistic conference speakers and delegates on how to make the whole experience better for us. The conference details listed autistic people among those who should attend, please make it easier for us to do this.

A woman next to me was struggling to hear a speaker (as was I but as usual I thought it was just me!) and asked for the sound to be adjusted/raised. The tech guy’s response was along the lines of “there’s nothing I can do, I can hear it fine”. This is very poor practice, and exactly the sort of thing many disabled people experience in day to day life. There may well not have been anything he could do, but his blasé response to our difficulties was not in the spirit of inclusion.

  • Please ask conference staff not to dismiss delegate requests.

I was disappointed that there weren’t more autistic speakers, I believe that Wenn Lawson was the only autistic speaker. It would have been helpful to have some more personal experiences, especially as many in the audience were, or were working with, parents of autistic children. As a parent of a child struggling with their mental health it is always helpful to hear from older autistics who have been through some of the very serious mental health problems being talked about. As parents we need to know it can get better. The day also seemed to largely focus on autistic people without intellectual/language disabilities, this wasn’t made clear in the programme and was disappointing.

  • Please include more autistic speakers in your conferences.
  • Please don’t forget that autistic people with intellectual, cognitive and language difficulties also experience mental health problems.

The worst part of the day was Tony Attwood. I was so looking forward to hearing him speak. His books were instrumental in giving me the knowledge I needed to get my son assessed and diagnosed when it felt like nobody else believed me. Clearly he is very knowledgeable and has a good understanding of the Asperger-type presentation of autism. But his talks were chock-full of jokes at our expense. It was very much an outsider looking in at the autistics and their funny little ways, oh how amusing we are, oh how the audience laughed at his quips about suicide, special interests, IQ, virginity and robots.

Attwood’s presentations came across as exploitative and offensive. He succeeded in othering autistic people and using us as the butt of his jokes. I now know that he has form for this and considers joking about autistic people a form of neurotypical social bonding, performing a sort of disparagement humour to bolster his material. It was like a trip in time back to the 70s where Alf Garnett discovers autism.

It really is not acceptable for a person in a position of power and influence to exploit a vulnerable and marginal group to raise laughs. It is surely unprofessional to talk about your clients and service users in such a disparaging way. I would guess that the majority of the audience were professionals. I would hate for any professional to talk about me or my son in this way.

I wonder if the time has come where people like Attwood, who were key figures in increasing understanding of the autism spectrum, but who are not autistic, need to step aside, accept their success, but let us speak for ourselves. There are autistic psychologists, researchers and writers (and many other things besides) who should be promoted and platformed. If we can say it for ourselves we do not need a neurotypical to say it for us.

  • Please produce some guidance for your speakers about respecting the subjects of their material.
  • Please don’t book speakers who mock and ridicule autistic people.
  • Please let us speak for ourselves when we can. If you are booking a big name speaker to attract participants let us share the platform.

To end, I think the NAS do some fantastic work, but it feels like there’s a disconnect between the different parts. The conference team need to take on board the work of the campaigning team. The NAS is the biggest autism charity in the UK and it needs to show everyone else how to get things right. Whether it’s training, supporting, housing or holding events for and about autistic people, it needs to demonstrate best practice.

I would like to thank Lucy Sanctuary for her fantastic talk about the benefits of speech and language therapy for mental health difficulties. Thanks also to her daughter who spoke to us via a film clip.

Please read my next post to see the reply from the NAS 🙂

29 thoughts on “How not to do an autism conference

  1. Sounds like my worst nightmare. Don’t do public transport with no toilets, nor do I eat unidentifiable sandwiches, or use seats that aren’t end seats and easily escapable!.
    That’s why I never attend events for Autistic people. I wouldn’t be comfortable at all.
    Well done for getting through it!.

    Liked by 2 people

  2. It sounds absolutely awful and what a disappointment Tony Attwood was. Great post and very well written as usual.

    Today I was queueing at a cash point. The queue was so long and the shop it was outside had a door that was slamming loudly everytime someone entered or exited. In the background a toddler was high pitched screaming. Arggh! I really did feel like an alien, so totally get what you mean.
    X

    Liked by 2 people

  3. Brilliant post- you should be paid to provide that kind of analysis and problem solving. I hope that all organisations holding such events in the future will read this and take on your recommendations.

    Liked by 3 people

  4. What a EXCELLENT job you have done 👏😇💌 I agree you should get paid for this painful experience!. 😱 😢 💔. I couldn’t go to all that craziness. 😵😷🙈🙉🙊.. Thank you for all your input. 💛

    Liked by 2 people

  5. Thank YOU…I really dislike the joking also. Felt quite the same when I went to see ‘The Curious Incident’ and found the audience laughing at autistic traits offensive, and stated so in my review in our 2014 magazine.

    Liked by 2 people

  6. This is a wonderful write-up: thank you, and sorry to hear the event was disappointing on so many levels. In slight defence of the organisers, I had also considered attending but concluded that it was mainly aimed at professionals. This may partly explain why they didn’t take more care with the planning, to ensure that needs of people with ASD were met.

    As a community I think we should next encourage the NAS to run a follow-up event for autistic people themselves. I’d be happy to contact them to suggest this and it would be great to offer autisticmotherland’s detailed feedback for them to take into account. There are some really important mental health questions that many of us would like to explore, but in safe and comfortable conditions. To get the most out of a conference the environment definitely needs to be right.

    Liked by 3 people

    1. Thanks Kath.

      I know that the NAS can get it right because their ‘public speaking for autistic people’ training day was absolutely spot on (I sang their praises in my ‘shit I learned at #speakersday’ post). It would be fantastic if they offered more events for autistic people only.

      We must remember though that many autistic people are professionals and academics or have more than a personal interest in autism.

      Some of the problems with this conference were very much venue specific. The drinks/food/toilets problems really should not have been a problem in a venue offering event space for these sort of numbers.

      Like

      1. Really good feedback re: Autism & Mental Health conference. I know the NAS work hard, but, if we don’t give them feedback then they can’t do better for us. I think Tony is very spectrumy and gets caught out with familiar ‘performance’ jokes he uses to engage with his audience. Maybe he doesn’t appreciate how uncomfortable his jokes make us feel? I will explore this with him. Thanks, Wenn

        Liked by 2 people

      2. Thanks Wenn, it would be wonderful if you could raise this directly with him. He’s been such an important figure in our family’s autistic realisation that it made it worse. He had further to fall in my estimation than a less significant figure might!

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  7. Please consider the use of the word ‘autistics’ I find this terminology as antiquated as kanner! Person with autism – Person first disability after & this collective term does suggests identifying by label which I have spent the past 20 something years correcting professionals about! I’m sure you don’t profess to speak for all but but that is a complete bugbear of mine.

    Like

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