This is why we need Autistic Pride

Observed annually on June 18, it was founded in 2005 by Aspies For Freedom who wanted to celebrate our community and move away from the medical model of disability.

Intentionally modelled on the LGBTQ+ Pride movement and scheduled within Pride month, it serves as a platform to challenge negative stereotypes and prejudices associated with autism.

Autistic pride is primarily a celebration. A celebration of the strengths, talents, and perspectives of autistic people. But, as with any social movement, there’s always an elephant in the room for me.

The fact that, despite the inaugural autistic pride event being way back in 2005, autistic people are still so far behind in social progression. We are still fighting for our rights and our place in society on a daily basis. Between 80 and 90% of us are unemployed. We still have so far to go before we achieve the equality that we deserve.

Even more so amidst ongoing destructive discourse around trans rights, in which the autistic community have found ourselves inserted against our will, this Autistic Pride Day needs to be focused on autistic voices – and our voices only. Not parents and carers, friends and family or charities.

One of the reasons Aspies For Freedom founded Autistic Pride was to illustrate that autism is not an illness or defect to be cured, but simply a natural variation of human neurology. Negative perceptions of autism are rife, never having recovered from the anti-vax movement, and are still dominated by the idea that autism is an illness to be avoided at all costs.

The reality is that autism is just difference. A different way of thinking, of doing, of being. Not an affliction to avoid at all costs – a beautiful and multi-dimensional existence that we would benefit from understanding more fully. The difficulties faced by our community are a direct result of the society we live in – not our neurotype.

Autism is a developmental condition characterised by differences in social communication, sensory processing, and restricted or repetitive patterns of behaviour.

Whilst there are characteristics relatively typical across the board, every autistic person is different and experiences autism in a way unique to themselves. It’s also fluid – and needs can change instantaneously dependent on a number of factors, particularly environmental.

I know that when I am in my home, an environment that I can regulate and attune perfectly to my needs, my autism is far less loud than when I am packed on a Lothian bus surrounded by the public, for example. But environment isn’t everything. Sometimes I simply wake up in the morning and my entire existence feels impossible.

There are times when the smallest of tasks feels like climbing the tallest mountain in the world, and there are times when I can reach the peak faster than anyone else. There is no one way or one experience – we each live a multitude of experiences every day.

And yet, we are so often defined by a minuscule set of characteristics that simply don’t authentically translate into lived experience.

Language is one of the key drivers holding us back. Phrases such as “on the spectrum” are still at the forefront of autism discussion – despite being rejected by the autistic community. The “spectrum” views autism as a straight line progressing from mild to severe – when actually, a wheel of traits is widely regarded as being far more accurate in translating lived experience.

Every autistic person’s wheel is different – one person might find eye contact impossible, whilst another might find it easy. A person might have considerable needs in a social setting, and very little in a professional setting.

The autism wheel allows autistic people to more accurately portray what autism is for them – and allows space for varying needs.

Functioning labels go part and parcel with “on the spectrum” discourse. There is no “mild” or “severe” end of the scale, and as I’ve already mentioned, the needs of an autistic person can, and often do, vary pretty significantly.

There are days when I’d be classed as “severe” and there are days when I’d be classed as “mild” – there are even days when I could be classed as both. Putting autistic people in a box dependent on how you expect them to burden you is not for the benefit of autistic people. Please take the time to unpack it – and stop doing it.

Perhaps the most classic though, is person-first language.

It makes me wince when someone tells me I “have autism” as if it’s a trendy handbag that I carry around with me. This is often painted as a kindness – separating the autism from the person. What it actually says is that you think autism is something terrible that we should want to be seen aside from. That we shouldn’t let it define us.

The trouble is, autism is not something we can pick up and put down – it’s who we are. Who we have always been. Who we always will be. It defines every aspect of us and how we see the world. There’s nothing shameful about that.

The reason breaking down these stereotypes is the key to our liberation is that they shape how we are seen by both others and ourselves. If you spend enough time being told both overtly and subliminally that you are a cold, unfeeling robot who can’t socialise and often has tantrums of course you will feel isolated and different.

Autism as a concept is still very new, and the first person ever diagnosed with autism is still alive. It’s therefore hardly a stretch to imagine that prevalence is not yet properly identified – a known fact when it comes to women and girls. Often left long into adulthood before they are afforded the tools they need to be themselves, if ever.

Autistic Pride is a time to celebrate the neurodivergent community and promote acceptance, understanding, and inclusion. But it’s also a time to reflect on how slow progress remains, and commit ourselves to the improvement that is desperately needed.

Challenging stereotypes, using appropriate language and gaining insight from autistic people ourselves are the basic foundations of that change. If we are ever to foster a culture in which autistic people can thrive as our true selves, we need to be your central point of contact. And not just on Autistic Pride Day or Autism Acceptance Month.

Nothing about us, without us.