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Youth participation
Tuesday 11 April 2017

Everyone’s “normal” is different

Know Your Normal is all about empowering autistic people to assess and communicate our own “normal” rather than being obliged to conform to rigid expectations – whether they’re expectations from the neurotypical world, or expectations about what an autistic person should be.

Lucy is living in student halls as she completes her Master’s degree. She is organised and rule-oriented – traits which have greatly helped her in her studies, even if they also mean she spends a long time waiting for the green man when everyone else is already crossing the road. In the right environment, she can be very chatty and if anything TOO loud, and she has built a relatively active social life around university and her special interests.”

Tim becomes very anxious around change or conflict or when making decisions, often making meaningless vocalisations and scratching at his arms in the process; he tends to be more coherent typing than talking. He currently greatly enjoys online Doctor Who forums, watching YouTube videos about the London Underground, and playing with his new stress toy.”
Taken separately, each of these might conjure up very different pictures of autism; some would label Lucy “high-functioning” and Tim “low-functioning”.

But none of these traits contradict each other – Lucy and Tim are the same person, more specifically me. My normal is all of the above.

It’s always frustrating when people interpret “autism is a spectrum” to mean “autism is a binary” and continue to push inaccurate and divisive stereotypes. Research as part of our Know Your Normal campaign (full details available soon!) has shown that such stereotypes are often used to deny autism diagnosis (because someone is verbal or has friends, for example). This may have serious consequences for mental health later on as these people continue to blame themselves when things go wrong and are unable to access relevant services.

And it isn’t just neurotypical people who hear and believe these views; they can also have a huge impact on the self-esteem of autistic people. As our findings show, this is particularly true for people who are still undiagnosed as they might not seek diagnosis due to narrow ideas of what autism is, again with serious consequences for their mental health.

Whether diagnosed or not, autistic children generally grow up being made to feel ashamed of certain traits and, wherever possible, to hide them – even if doing so is unsustainable and harmful to mental health.

Then, particularly as adults, these same people are disbelieved for instinctively masking those traits and, as a result, not fitting the world’s rigid idea of autism. Basically, it’s a trap – especially when the denial involves contrasting an adult with a child, as if that can be a fair comparison.

I also see these dynamics play out online a lot, and it’s always really disheartening – and not just because it involves making personal assumptions about total strangers, as well as pressure to argue back in case those stereotypes take hold and undermine autistic voices. The thing is, lots of people (autistic or not) just don’t want to plaster their worst moments all over social media. Some people do, to seek advice or reassurance, and that’s great; but for others, the vulnerability and risk of judgement isn’t worth it – and this might be particularly true for people who have spent their whole life being judged around social norms.

Just because someone isn’t shouting about their difficulties doesn’t mean those difficulties don’t exist. Again, this raises the issue of comparing adults (who can usually control what they reveal about themselves) to children (who usually can’t control what their parents reveal about them) – perhaps this should give us all food for thought about the public documentation of autistic children’s lowest points online!

The result of all this is a huge number of people who are “autistic enough” to meet the diagnostic criteria, and certainly “autistic enough” to face mocking and bullying and discrimination and inaccessibility because of it, but suddenly NOT “autistic enough” to be taken seriously when we want to address it.

It’s another example of the false binary – if you’ve communicated an opinion, then your autism must not cause any difficulties – which, inevitably, means the only people who are actually listened to are people who aren’t autistic. This contributes to another stereotype of autism as being only about outward behaviours (in other words, how autism affects neurotypical people), ignoring sensory issues and other “invisible” differences. Clearly, autism can also affect the lives of parents and other relatives, but it can be damaging when this is the only perspective considered.

Indeed, our Know Your Normal participants were overwhelmingly positive about their families as a source of support, but many were reluctant to disclose mental health problems to family because they didn’t want to be a burden on them – highlighting the impact of constantly framing autism as a burden. We now know that the autistic spectrum is as diverse as humanity itself. That’s not a reason to become defensive and double down on stereotypes – it’s a reason to think bigger.

We’re all different, so one person’s experience doesn’t have to take anything away from another person’s experience.
As it stands, autistic people often face a double bind in talking about these experiences – any positive aspects might be used to dismiss us altogether, but any negative aspects might be used against us to promote wholly negative stereotypes.

Know Your Normal is all about empowering autistic people to assess and communicate our own “normal” rather than being obliged to conform to rigid expectations – whether they’re expectations from the neurotypical world, or expectations about what an autistic person should be.

For more information about Know Your Normal, and to download our free toolkit for assessing and communicating mental health, visit our Know Your Normal toolkit page.