Autism Acceptance Week: What is Autism and What Does Acceptance Look Like?

I was sixteen when the question of whether I could possibly be autistic arose and, at this stage, my understanding of autism was limited. I thought about the TV series Atypical that I had recently watched and about Sheldon from The Big Bang Theory. I thought that autistic people tended to like trains or maths. I thought that autism was a disorder. The only autistic people I could think of were white, cisgender boys. This was the ‘autism awareness’ that I had been exposed to.

This week is Autism Acceptance Week - a week that aims to increase understanding, acceptance and inclusion of autistic people, rather than just raise awareness. Though, of course, awareness is still needed especially for those who don’t see their experiences and needs portrayed in the media/general discourse around autism.

What is Autism?

Autism is a neurodevelopmental condition that affects the way an individual sees, interprets, understands and experiences the world. It results in differences in processing and communication. Autism involves:

• Monotropism - intense focus, deep processing, difficulty shifting attention from a specific interest/topic

• Special interests - intense, specific interests

• Differences in sensory processing - hypo or hyper sensitivity to sensory stimuli, differences in interoceptive awareness (recognising bodily sensations/needs), difficulty filtering out sensory information

• Stimming - repetitive movements to regulate or self-soothe

• Need for routine, familiarity and predictability - takes longer to build social templates, anxiety over unfamiliar situations

• Communication differences - literal interpretation of language, use of specific/direct language

• Social differences - difficulty reading people or understanding their intentions

• Alexithymia - difficulty recognising and understanding emotions (affects around 50% autistic people)

This is by no means a definitive list, nor does it mean every autistic person will experience all of the above. These are just some of the ways that I define autism. Though, the diagnostic criteria says something different.

How The DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) Defines Autism

The DSM-5 is used by clinicians to diagnose ‘mental disorders’. First things first, autism is not a mental disorder. Nevertheless, this is its criterion:

1. Persistent deficits in social communication and social interaction.

2. Restricted, repetitive patterns of behaviour, interests or activities.

3. Causes clinically significant impairment in functioning.

I hate the way this is worded. Deficits are only deficits if we view difference to be a bad thing or ‘less than’. It should be okay for people to communicate in different ways. Some autistic people are non-speaking and use an AAC device to communicate. Others are hyper-verbal. These things are only deficits if we perceive them to be. Similarly, ‘restrictive, repetitive patterns of behaviour, interests or activities’ is a very negative way to perceive the intense interests and focus that autistic people can have. Would we describe someone studying a PhD on a highly specialised topic for 7 years ‘restrictive’? And ‘clinically significant impairment in functioning’. Well…that depends. Certainly, when I was 13 and rocking underneath tables in lessons because I wasn’t ‘functioning’ in the way 13-year-olds were expected to. What about when I was 6 and buried in imaginative lands inside my head, rather happy and fulfilled? I wasn’t very impaired then. But I didn’t one-day wake up autistic. I was always autistic.

The neurodiversity paradigm views the natural variation of people’s minds as a neutral fact - no-one is inherently disordered. Though, that doesn’t mean autism isn’t disabling. It certainly can be. Autism is a spectrum, meaning that every autistic person experiences different traits to different intensities, and our functioning or the intensity of these varies day-to-day, even from minute-to-minute. But, our needs do vary. I am an autistic person with low support needs. Others have higher needs and co-occurring conditions that means they require more support than I do.

In our current society, we do need the ability to diagnose autism because this tends to open up support that is otherwise inaccessible. It means the individual is recognised as having a disability, providing them with protection and a right to reasonable adjustments under The Equality Act. Although a person isn’t required to have a medical diagnosis to be considered disabled under The Equality Act - only to have a ‘physical or mental impairment’ that ‘has a substantial and long-term adverse effect on your ability to do normal day-to-day activities’ - without a diagnosis, this can be harder to evidence. Of course, even with this ‘protection’, disabled people still face discrimination and barriers to things like employment, education and accessing social environments, even more so for those with multiply marginalised identities, for example LGBTQ+ autistic people and autistic people of colour.

What Does Acceptance Look Like?

I have a few ideas.

1. It incorporates a diverse range of autistic people of varying support needs

2. It accepts everyone’s differences and does not push for conformity

3. It understands individuals’ strengths and needs, and provides adjustments

4. It does not make judgements or assumptions, but seeks to understand

5. It means autistic people do not face discrimination, ableism or societal barriers due to their autism

One-day, I hope, we will get there with acceptance. But that won’t happen until we listen to and learn from a diverse range of autistic people. Here are just a few suggestions of people to follow on Instagram:

• @auti_anthology talks about autism through a Chinese cultural lens, which has taught me so much

• @khadija_gbla is an Afro-Indigenous non-binary writer, speaker and consultant who talks about a variety of important topics including being autistic and Black

• @br_ead_loaves shares about being a multiply marginalised disabled non-verbal autistic person with high support needs

• @autisticquest is a non-binary autistic person with medium support needs sharing their experience as a multiply disabled autistic person

• @itssjustliv is a Black medium support needs autistic person with ADHD and chronic illness sharing insight into navigating ADHD and autism alongside chronic illness

Let’s listen to and uplift a range of autistic voices.

Happy Autism Acceptance Week and Autism Acceptance Month.

Love, Emily x

GIRL UNMASKED (The Sunday Times Bestseller) is available to order from Amazon and all major bookstores as a hardback, paperback, audiobook and ebook.
linktr.ee/itsemilykaty

If you would like to support my blog on a one-off or monthly basis, you can here: https://buymeacoffee.com/itsemilykaty