In Conversation with Autistic Mutual Aids Society Edinburgh

What’s Autistic Mutual Aid Society Edinburgh (AMASE)?

AMASE is a representative Autistic People’s Organisation (APO). This means that we are led by autistic people and aim to represent the views and concerns of our autistic members. We were founded in 2017, all of our committee and full members are autistic. Allies who support our aims can join as associate members. Membership is free and is the best way to keep up with what we’re doing and potentially get involved.

 

What does AMASE do?

We engage in political advocacy, such as going to cross-party meetings on autism and potentially other relevant topics, to represent autistic people’s perspectives. We’re on the Strategy Review Group, which is looking at the autism strategy in Scotland. If we hear about an event which claims to be or should be putting across autistic people and it isn’t, we might write and say, “hello, autistic people should be here” or “if you’re making a decision about autistic people without us, you should change that.”

That’s our advocacy strand, but we also do education and community building. Education involves running training and workshops, largely aimed at non-autistic people. We try to tell them about autism from autistic perspectives. We strongly believe that autism training should largely be led by autistic people. 

We also welcome newly-diagnosed or newly-identified autistic people to the community and educate them about autism and the community, through occasional discussion sessions for newly-identified autistic people. We hosted the first two autistic pride picnics in Edinburgh, this and last year. We try to put on other community events, but we’re quite small so our resources are limited – we could definitely do with more volunteers! We’ve got a trans, non-binary and gender minority group starting soon.

 

When you say that you’re involving newly-identified as well as newly-diagnosed autistic people, does that mean AMASE believes self-diagnosis is valid?

There are so many barriers to getting diagnosed. There are parts of Scotland where there’s no avenue to getting a diagnosis from the NHS. In Edinburgh, we’re a bit luckier, but it still isn’t easy. There are a lot of assessment teams and diagnosticians who don’t understand different ways of presenting as an autistic person, why an adult might want a diagnosis, and why it might be valuable. You must usually both fit the diagnostic criteria and for it to be judged a significant problem for you, in order to be diagnosed, even though the levels of support we need might vary depending on our life circumstances. Some people may identify with autistic traits and connect with our community but may decide not to seek a diagnosis, as it can be a stressful process. It might even be that you just can’t make the initial phone call that’s required to get a referral. 

The way I think about it is, if somebody is connecting with the community, they identify with many autistic traits, and it’s helpful for them, that’s all that really matters. If connecting with the community helps them figure out things about themselves, coping strategies, and finding a community, then self-diagnosis is absolutely valid.

 

Should we problematise terminologies used by allistic (non-autistic) people to describe autistic people and why?

I think language is really important, and I don’t think it gets talked about enough. First of all, allistic people should take the lead from autistic people. There’s a lot that we can change with language, like moving away from pathologising and deficit-based terminology. That’s why I never use ‘Autism Spectrum Disorder (ASD).’ I advise anyone who works with autistic people to avoid it as well, because it’s not going to be good for an autistic individual’s sense of self. They speak about us having ‘restricted interests’, for example, but why can’t we just talk about interests? Many allistic people seem to have quite restricted interests to me! We need to normalise the use of non-stigmatising language. 

People also talk about ‘restricted repetitive behaviours’ sometimes to refer to stimming, but when it’s not injurious or disruptive to others, stimming can be a really good coping strategy, so why does it need to be framed as a problematic ‘behaviour?’ It’s a way that we have learnt to self-regulate. Honestly, I think fidget toys have become popular because a lot of allistic people have realised that they could also do with learning to self-regulate better. 

One of the most valuable things for many autistic people when they start to learn about their identity is learning the language of self-advocacy. Meeting other autistic people and figuring out ways to describe yourself to others, and talk about things that you need accommodation for in ways that don’t put yourself and others down. I’ve learnt to say in noisy places that, “I can’t hear” or “I can’t process lots of background noise, I need to go somewhere quieter.” It took a big change in self-perception to be able to say that. It was more specific to my needs than saying “I’m autistic, help.” It’s just stating a fact, like “I don’t like the taste of Brie, get me something else.” If people talk about autism in these ways, we can start to advocate for ourselves and help non-autistic people to get that it’s not a big deal, there are clear reasons why we do what we do. It’s not ‘bizarre’ behaviour.

 

Autistic students might mask to fit in. Why do you think autistic people feel the need for masking in academic settings?

There’s a broader question of why autistic people feel the need to mask at all, and the reasons are going to be similar. If you’re a student and you’re coming into university straight from high school, you’re probably coming from a lot of high school pressures to mask, put on you when you were a kid and a teenager. So you might not know any alternatives to masking or might not feel safe not to. 

In academia, and in general, not masking can mean potentially being more vulnerable from being more obviously different. That’s a scary thing to be, especially when you don’t necessarily have the language to explain it, or even if you did,  people might not understand or be validating. Academia is interesting because it tends to be a very small community. If you’re going to be stuck here for say, four years or more, you might worry about the community treating you differently if you were more obviously different. There are many different reasons people mask, but masking also comes at a cost and can be damaging on our mental health and sense of self. I don’t think I masked very effectively when I was a student here, but back then I also didn’t know anything about autism. We need to be addressing why people feel the need to mask. It’s not just ableism in society, it’s about fear of difference. You can say similar things about passing and masking in other oppressed and minority communities – why someone might not come out about their sexuality, or why somebody might not reveal they are trans when they are ‘cis-passing.’ It might be essential to protecting your safety, but it can come at the cost of your mental health.

If we had more examples of people who don’t mask, that might help to normalise different ways of being and reduce the need for masking for others. It’s worth saying that the ability to mask is not a ‘privilege’ that every autistic person has. It’s difficult, but the ability to not have to mask could also be a privilege. It’s important to think about these different dynamics but ultimately figure out what’s safe, important and comfortable for you. 

 

I feel that academic research in autism is influenced by negative media portrayals. Research focuses on curing autism more than how society can accommodate autistic people better. Why do you think media only shows autistic people with high support needs, who are portrayed as a burden to others around them as well as struggling individually?

Partly it’s to do with lack of diverse portrayals. Partly it’s to do with this pathologising, deficit-based narrative that doesn’t view autism from the inside. This narrative becomes internalised in autistic people too. If you tell someone all their life that they are unempathetic and terrible to other humans, why would they not believe it? How helpful is it for them to be told this? How does it make anyone feel to be told that they are a ‘triad of impairments’, for example, or that their way of sensing and being in the world is a deficit and an impairment? It doesn’t mean that we don’t struggle, and encounter challenges, but we can’t have our whole existence framed as a struggle. These portrayals lead people to view us as a tragedy and to think “aw, wouldn’t it be better if they just didn’t exist. How sad that they are autistic.” It’s very weird because when you tell people that you’re autistic, they go “aw I’m sorry.”

Someone I know came out as autistic on Twitter a while ago, and a lot of autistic people tweeted and said, “congratulations, welcome to the community!” The person who posted it said, “wow” because when they had previously come out to non-autistic people, they responded with, “I’m so sorry” or were weird about it. It was the first time they heard people say “congratulations” and they never realised how much they needed to hear that. 

Definitions and diagnostic criteria to define autism come from people viewing autistic people from the outside and going “well, that looks terrible” and not really understanding our motivations or that along with the things we find difficult, we might experience intense joy and absorption in our interests. It’s a way of being, so it’s irrelevant whether it’s good or bad most of the time because it just is.

 

So what are the positive sides of being autistic?

It depends on the individual, but interestingly, because not a lot is written about what’s positive about being autistic, people sometimes end up not thinking of the positives as being integral to their autistic way of being. Not every autistic person hyperfocusses, but it can be nice to be able to hyperfocus; the absorption that comes with that is lovely. I also love it when I meet autistic people who are enthused on a subject they’re really into. It’s so great to see somebody be deeply into something. Again, these are generalisations. I also really appreciate having sensitive senses. I like being able to feel the intensity of things. The flip side, of course, is that it can also sometimes be scary and overwhelming. 

If we assume that people who are more neurotypical are able to more easily communicate with each other using body language and implicit social understanding, that’s positive in the sense that they can connect with people who are more similar to them quite easily, so they can communicate with the majority. But maybe they have more assumptions that they don’t need to question. Maybe they aren’t challenged necessarily to reach a point of self-understanding in the same way, even while that kind of growth can be useful. There are flip sides to every way of being I think. You can take a lot of autistic experiences and see the positives. A lot of people will say that the reason they wouldn’t want a cure is that it’s meaningless because they wouldn’t be them anymore. It would fundamentally change who they are, and I agree with that.

 

AMASE welcomes and encourages those who identify as autistic, and allies, to join as members or associate members and get involved. For further information and to join AMASE for free, check out their website (www.amase.org.uk) or Twitter (@amasedin).

 

Image: Fergus Murray

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