“Dress up pretty”, said my mother when I told her I am going. “Just be yourself” said Melt Olckers, the autism self advocate who invited me, when I wondered if I could be of any use there.
I was recently invited to an Autism Stakeholder Engagement (ASE), where parents, professionals and a few people on the spectrum discussed autism. This is the event for which Mom and Melt gave different advice.
Autism South Africa wanted to pay travel fees for 10 people on the spectrum to attend, but found only four who would come.
Here is what I think they did right:
1) They actually invited autistics, specifically seeking them out and paying for their travel.
Too many autism organisations have nobody autistic advising them, or on their board. You could – and some of my online autism friends would – argue that Autism South Africa is not even close, at the moment, to where they are supposed to be for including autistics. In that case, this is a step in the right direction.
2) They offered to do the practical work of travel arrangements for the invited autistics.
My first thought, when invited, was how hard it would be to organize.
If I go by plane from Bloemfontein, I have to organize a friend to take me to the bus stop for the Welkom-Bloemfontein bus. And a taxi from the Bloemfontein bus stop to the Bloemfontein airport. And a plane from Bloemfontein toe Cape Town. And a taxi from there to the hotel. And a hotel stay. And travel from the hotel to the conference. And everything in reverse for the trip back.
This could be overwhelming for someone without own transport, even more so if you, like many on the spectrum, struggle with executive functioning. They were willing to take much of that organizing out of autistic hands, leaving me to organize the getting to the airport and getting a hotel part.
To be honest, I organized a bit more than that myself, but the reason is that I did not properly read their offer, not that I could not have used the support.
3) At the engagement, they showed how the interests of parents, professionals and autistics differ, which taught all about the needs that autistics want met.
Autism SA asked different stakeholders about their priorities. Based on that, they showed statistics and pie charts. Not one professional mentioned promoting/ facilitating/ listening to self advocacy as a priority in autism goals. Meanwhile, not one autistics mentioned education as an important priority. (We all did have some opinions on education, though, and passionately discussed it. But we felt there are more pressing needs. Interestingly, several of the Aspies I know of like to teach and are good at it.)
4) The group discussion was truly interesting in my group.
I loved the discussion in our group (the one with four self-advocates), and saw our ideas on especially the education topic as practical and able to help more children than just autistics. The teachers for autistic children who shared our table felt they sure chose the best table for the ASE discussion, and I agree with them.
Here is where I think they could improve:
1) Include more and more varied autistics.
When making a speech at the ASE, Melt Olckers said that statistically 70% of those on the spectrum are non-speaking, 25% are Aspies, and 5% autistic savants. Yet all 4 of us who attended were speaking, working Aspies. While Melt regards us as friends and like us, we are not the only ones who should get the chance to represent ourselves. I agree: Effort should be made to include others unlike us in these forums.
(I cannot testify to how much or how little effort they made to find autism self advocates. But we – Autism SA and South African autistics – need to put heads together on how to get more of us involved.)
2) Communicate better with us.
I got invited to the ASE by Melt, who is a Facebook friend of mine. I did not see it advertised in any online community that I am part off. Since many autistics do a lot of their “talking” technologically, Internet groups for autistics is a good place to advertise for autistics who want to attend.
Nobody told me what will happen or what the program is. I like to know beforehand what will happen. I would even have liked to know beforehand what the rest of the conference was about – even the topics of the next two days which was not part of the ASE and to which I was not invited. If I know what people want to discuss, I could better understand where I fit in and what tiny role I can play in the system.
Also, since I saw no advertising for the ASE in groups where I hang out, I did not even know the organizers are willing to help with travel arrangements. I am probably not the only one who gets overwhelmed at the idea of organizing something like that. Perhaps knowing that earlier will help some of us.
3) Hold an “Ask me, I am autistic” panel discussion where professionals and parents ask us questions.
Some on the spectrum communicate technologically but not by words. (None of us at this conference did.) Some may need a bit of time to process questions and give a thoughtful answer, rather than answering right away. But advocates certainly have opinions and ways to explain it.
Let the therapists/ teachers/ moms/ dads ask questions at the start of the conference. Our group get the questions, can discuss among ourselves and the organizers schedule us to talk (or give written opinions, reading it to the audience/ printed out to the audience where applicable) later. If three different members of the autistic group wants to add to the answer (or give three different answers on how they experience it) on (for example) sensory issues, let all three answer before moving to the next question.
Do not give us only a three-minute report back time by one person, speaking on behalf of the entire group, to answer all questions. Give us a reasonable time for answering one question at a time. This way, you enable everyone at the conference to metaphorically share our table.
PS: My compromise between dressing up pretty and being myself was to wear the skirt, top and sleeveless lace jacket my mother suggested, but to slip on canvas shoes. Dressing pretty when I am in the mood and when the clothes are still comfy is part of “being myself” on at least some days. But uncomfortable shoes are not me – even more so on rainy days like the one at the ASE in Stellenbosch.