Autism Interview #124: Lydia Wilkins on Autism Acceptance

Lydia (right) is pictured above with her mentor, biographer Lesley Ann Jones

Lydia Wilkins is a freelance journalist based in the UK. She has written for publications including The Independent, Readers Digest, The Metro, Refinery 29, and others. She also documents life with Aspergers Syndrome, over at her blog Mademoiselle Women. Here she regularly interviews people such as Anastacia, journalist Paul Conroy, and others, as well as discussing topics such as interoception. This week she discusses Autism acceptance and offers some advocacy tips for parents.

How did you become aware of your autistic identity? What led you to pursue an autism diagnosis? 

I was diagnosed in January 2015; in March I turned sixteen. But it was a long way to get a diagnosis; throughout my time in education, I remember a lot of different tests. Questions were raised about why I was (and still am) clumsy, for instance; why I seemed to have a capacity for language that wasn’t exactly normal, but struggled with a classroom environment; why I would jump, become upset at seemingly minimal noise. It took a long time for someone to say “maybe she’s Autistic.” It seems to me, retrospectively, each of the different hallmarks I presented were considered to be individual, stand alone labels (Clumsy; must be Dyspraxia!). But they were not at all individual. The dilemma of “would a label be helpful?” led to starting the process of getting a diagnosis – which took ages, still! 

In a recent article, you said that speculating whether or not someone is on the spectrum (or using the term ‘autistic’ casually or as a slur) undermines those autistics who struggle or are discriminated against and diminishes their experience. In your opinion, would improved understanding of the autistic condition (in all forms) deter this kind of speculation? Sharing articles like the one you authored? Anything else NTs can do?

The article came about as I spotted a lot of ‘spectrum speculation’ on Twitter; the individuals in question had made no reference to being Autistic, yet because they were apparently a bit awkward, a bit introverted, they just *obviously* had to be Autistic. And that is a massive oversimplification. Autism is not just “oh, I feel a bit shy,” or being clumsy occasionally; it is far more nuanced than this. To use Autism as a verbal ‘stick’ like this undermines so many difficulties I have, and I think others face, too. 

It risks Autism being used as an excuse for what is, well, just rudeness or bullying (Example: apparently a video on social media showed a person using the N word. And the Twitter fuss was because he’d used his Autism as an excuse – as in, “Oh, I’m Autistic, I didn’t know, sorry.”). I had a wonderful trans friend who had a brilliant way of putting it; it’s a reason, not an excuse. Autism is a reason that I may have difficulty learning with particular methods, or that I have trouble in loud environments; it is not an excuse to use racist language. (Hopefully this makes sense!) It undermines me when I struggle with loud environments, or with learning; my issues with communication are not because I am shy, it is because I struggle with the physicality sometimes. 

I think more acceptance would deter this, definitely. I also think that people not on spectrum have to play a part; we carry equal weight to adapt, to manage. Better training in schools, healthcare, across the board would be a start. And just asking people on the spectrum what you can do to be an ally helps, too! I have more thoughts on the subject, but I think I have rambled on enough about this. 

What are you most passionate about?

That’s a difficult question. There are a lot of different options to answer with! I am a journalist by trade; I care passionately about the freedom to report. We must be able to do our jobs without fear of persecution or detention, without fear or excessive risks. Cases like that of Marie Colvin are important for this reason. I also care about good reporting; I was inspired to become a journalist, having grown up to a backdrop of Nick Davies’ reporting for The Guardian. People like Harold Evans, Bruce Page, Nick Davies are my reporting heroes. A world without news, and one without truth, is always going to be a dark place. 

Give an example of something supportive someone did for you in your life that was helpful and contributed to positive identity development. And/Or, if you have an example of the opposite, feel free to discuss that as well.

I think of myself as a journalist first, someone on spectrum second.. even if I write about being on spectrum a lot! There is a former lecturer I sometimes meet; he taught me law and how to ‘sub’ copy. Now, he is the first teacher who truly understood me, and who worked to understand the way I learn, rather than the other way around. He also never made ‘a thing’ of me being on the spectrum; it was just secondary, not to be fussed over, or drawn attention to. He was more interested in what I could do as a trainee journalist, rather than me as an Autistic individual. This man taught me a lot, and he changed my worldview, significantly. And I got to do things I never thought would be possible – like travelling to Germany – because of the way he allowed me to learn. Later, after I graduated, we reminisced over a pint – and I recounted how a source had guessed I was on the spectrum, asking why I wasn’t “normal.” The lecturer was shocked – asking rhetorically “what the f*** is normal?!” He later said that he was envious of my ‘skills’ – as I’m fairly well-organised, because I’ve adapted to executive functioning challenges. 

There’s also a woman who I have privately nicknamed ‘Aunty’ (She doesn’t know this, I don’t think.). Sometimes I struggle; there has occasionally been prejudice in newsrooms, as well as discrimination. As a freelancer, I get significantly less of this, but there is still some prejudice occasionally. It’s so unhelpful to tell me, over and over, that x is an issue. Telling me what I could do better, in a polite way, without being cruel, is a better approach. This came to a head when I last saw her; she saw I was upset, but trying to keep the issue away from the present, as it wasn’t relevant. We had a heart-to-heart, really. It took me by surprise, really, but she is an incredibly perceptive woman; every detail was dissected, and she insisted on knowing exactly what happened, why I felt upset. She signalled to me that she cared. In an odd way, she made me ‘human’ again – rather than just a label, the thing people can see before they see me, sometimes. My evening ended with a kind of clumsy hug. And I am very grateful to her. 

I speak a lot about prejudice, discrimination; today I’m in more of a positive mood. And I want to celebrate my allies! 🙂

What are some recommendations you have for families who are interested in participating in additional advocacy efforts during Autism Awareness Month? In other words, what specifically can they be doing to improve autism acceptance in their own communities (instead of raising money for vague “awareness” campaigns)?

I have issues with the topic of ‘awareness.’ I am not broken, as a puzzle piece symbol would lead anyone to believe; I am a fully formed human being. I think it is counter-productive to raise efforts, in order to say “Hey look, Autism is alive and kicking!” Those efforts could be easily channeled into beneficial research – such as looking at areas like EDS and ASD. Awareness is not helping. Then you have the extra layer of disinformation, scaremongering, etc… 

In answer to your question, though; just ask! If you can. I do not speak for everyone, as Autism is a spectrum. But for me, it was a revelation when a friend asked me, “what can I do?” That matters far more, at a very basic level. Acceptance matters more, I think; better training in schools, hospitals, at the GP surgery, in supermarkets, policing, airports, should also be a high priority. Better diagnostic criteria, too. I’m female, and it took me longer to get a diagnosis; I think there is a direct correlation for me personally. In a way, the question is a little too narrow, I think.

People matter more than campaigns. People are the ones who matter – not the quack experts with MMS ‘solutions,’ those who love to speak about the myth of Autism being caused by vaccines – but the people at the heart of the matter. Amplify Autistic voices; they should be at the heart of the issue. More than anything. 

In your opinion, what role do NT parents play in autism advocacy? Where/how are they helpful? When do they overstep?

If you mean a neurotypical who advocates on behalf of someone, I’m not sure I can comment to this. Someone may need round-the-clock care; this is needed, for obvious reasons. But I worry about the demographic referred to as ‘Autism mom.’ Autism is not a tragedy, but it is not a superpower.

However, rather than fighting against it – which could be unhealthy – why not use the hallmarks it gives you, turn it to an asset? I am a journalist; I can lack a filter. But I’d argue, having interviewed a litany of people, this makes me a better interviewer. I also work well on long-term or long-form projects, thanks to hyper focus/special interests. ‘Autism moms’ seem to think that they are somehow a victim in this equation; they aren’t. No one is. But a child will need your support, regardless! And that starts by accepting them, adapting to their needs, speaking up in meetings that ask for support in education, etc. See the skills, and use them to your advantage. Creating resentment of yourself is unhelpful; Autism is for the duration of your life. 

I do not like this ‘us vs. them’ feel, either. I do not agree with anti-vaxxers, and those who support ‘curing,’ as both lead to dangerous situations. I do not think that should be tolerated at all; to me, it is abuse to give a child an MMS solution. However, we have to work with people not on the spectrum; it would be naive to think otherwise. I’d love it if people not on spectrum read about being Autistic; I can get fed up with explaining the same issue, over and over, when I could be doing something far better with my time. (Like an interview, or whatever project I’m working on!) Explaining an issue should mean a change is in place; it is incredibly frustrating when it’s not. That is when someone not on spectrum can be incredibly unhelpful. 

As to over-stepping the mark; I find being ‘outed’ difficult to deal with. I write about Autism online, but making this a central point of a professional arrangement is just unhelpful; it’s surplus to me as a person, really. It doesn’t stop me doing what I do; why should it? My diagnosis is for me, and for me alone; I should not have to deal with the process of someone, without my express consent, disclosing I’m Autistic. The idea is to be helpful, but to me it oversteps the mark. 

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