The Undiagnosed Autistic People

I’m giving myself permission to blog about autism every day this week. There is SO much I could say and usually I don’t say it. There are other “messages” I’m supposed to transmit like- “Come see my show about Northern women” or “I’m really normal for a poet, honest” or “Do book me for that workshop, I’m great at running them”. Anyway, this week I’m jamming my own signals. Starting by writing about the many undiagnosed autistic people I meet.

It’s a bit taboo to diagnose people without being a psychologist or knowing someone’s full developmental history. But myself and many autistic people can’t help it. We notice, even if we don’t say. We have autism-dar (like Gaydar). Sometimes it’s so obvious to me it’s distracting. I can see someone’s brain and a body working and processing the world in a particular way. I want to say “Hello! We share a neurotype, but you possibly think autism is only Rainman or The A Word or Curious Incident of the Dog in the Night Time” or children locked up in padded rooms”.

It’s more obvious since I’ve got to know more autistic people and begun to recognise and accept my own traits more after my diagnosis eighteen months ago. I’m sure I have blind spots. And because of my life as a poet and performer who lives in a Northern town and travels all over for gigs, there are certain types of undiagnosed person I come into contact with way more regularly. The categories I’m about to list are coloured by a very “Me” lens and my own prejudices and biases. However, in that respect they’re much like the categories uncovered by psychologists and other medics everyday…

1. Autistic Creatives

The arts can be a great environment for autistic people. Quirks and different ways of seeing the world are positively welcomed, there is less pressure to conform or fit into one particular working environment.

Autistic creatives are perhaps particularly less likely to be diagnosed because of the common misinterpretation of “lack of imagination” in the diagnostic criteria- which as Dr Lorna Wing, who came up with the concept of the autistic spectrum once told me- actually means a lack of SOCIAL imagination (and ALL the diagnostic traits will usually become less obvious as people mature and learn).

This is perhaps even more acute for creative men, who actually fit the “female” profile of autism more closely and thus will have their traits dismissed. The undiagnosed autistic creative person is often able to focus with brilliant precision on their craft- be it music, writing, visual arts or performing. Their enthusiasms and passions spark and arc and can be a way to communicate and share with others. They can be open, exploratory, warm and charismatic – all further confounding stereotypes about autism, making them less likely to be diagnosed by themselves or others.

The art that an autistic creative makes or facilitates can resonate universally, but also function as another sort of autism-dar. I’ve spoken to several fellow autistic women writers for example, who recognise Virginia Woolf as thinking, processing the world, writing and being in a way that fits our neurotype.

The fact that I’m an autistic creative myself and see so many others thriving in similar lines of work contributes to me sometimes feeling I’m “making a fuss” by having a diagnosis. They’re proof positive that fulfilled lives without labels are perfectly possible- though I do sometimes think they might be a lot kinder to themselves in the context of a neoliberal capitalist system which can chew up and spit out flexible creatives if they knew more about the ways they experience the world differently.

2. Maverick Women

I love to meet a maverick woman and recognise her as a fellow traveller in the autistic mode of being-in-the-world.

She’s usually deeply honest and critical of the world around her, often in the interests of fighting causes for others. Learning hard lessons about what women are “supposed” to be and do and say and look like, she might ignore them entirely, conform to some degree whilst maintaining her independence, or cast them aside with relief at a certain point. She might be a loud maverick, whose voice carries above others or a quiet maverick who subtly, stubbornly goes her own way, often to the bewilderment and (possibly) eventual admiration of her peers.

She’s less likely to be diagnosed because there is still a lack of recognition in the diagnostic criteria that autism is just as common in women as in men, and a lack of understanding about how the different ways women are socialised can mean their traits are “masked”. She’s expected to do emotional labour so often learns how to do so, and gets on and does it.

3. Nerdy Men

This is in deep contrast to the nerdy man, who is most likely to be picked out as “Weird”, “Probably Aspergers”, though cruelly often not actually diagnosed due to being from the wrong generation or read as just a quiet introvert.

They’re the Dad or the husband who is much castigated for having no clue about social or relationship rules, because people are less likely to take the time to explain them to men than to the women they’re trying to get to do their emotional labour.

Psychologically open nerdy men are great, psychologically closed ones, I find a challenge. Happy to be sat next to them on a bus if we happen to share a special interest, otherwise I’m sorry to leave them to their perpetual bewilderment at how the world and people work. It’s interesting when this category of undiagnosed person turns up as a doctor or a psychologist…

Finally (Is this all sounding a bit horoscopey?) we have the category of:

4. People Diagnosed with Something Else

As people less likely to absorb gender schemas, there is a high correlation between being trans and autistic. But, due to the huge challenges in recognition for trans people, it may often be difficult to recognise or seek the possibility of an autism diagnosis too.
Ditto a strong correlation between anorexia and autism in young women- to the point that there are calls for anorexic women to be automatically screened for autism. (But we really are still in the early days of recognising this). Hence also why many autistic women are misdiagnosed with depression, anxiety or particularly Borderline Personality Disorder. That’s apart from the fact that these things (and associated trauma) can commonly be co-morbid with autism.

I haven’t been diagnosed with anything else personally, though did occasionally try to interest doctors in me having an eating disorder in my twenties (bulimia) without much success. I suspect my inability to adequately “perform distress” or articulate symptoms clearly wouldn’t have helped.

Anyway, this is in no way a definitive list or attempt to describe the complexities of autistic being. It’s some observations of the categories of people I meet who are likely to be unrecognised as autistic. It can be hard work pretending not to see them.

I recently did some work in a school where there were a lot of autistic students. They told me gleefully that they’d diagnosed one of their teachers. My autism-dar had pinged too. She fell into the “Maverick woman” category and it was clear that she was a skilled and inspiring teacher, and a great fit for her students who saw her as a role model. What a pity that ignorance and stigma deprives so many others of those role models…

4 thoughts on “The Undiagnosed Autistic People”

  1. I think I have an Autism-Dar too. I’m fairly sure I’m the undiagnosed Maverick Woman, and have lots of thoughts about this article (not negative).
    One that stands out: thank you for writing it!

  2. I have been on the receiving end of diagnosed autistic people’s autism-dar even though I am undiagnosed. I am in category 4 (trans), by the way. Love this series of posts (which I’ve only just discovered). 💜

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s