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  • Kristy Forbes

Autism is more than a medical diagnosis

Updated: Mar 1

I find it so difficult to hear a person speak about autism when they don’t identify as autistic.

For the longest time, non autistics have spoken about autistics via comparison of their ‘typical’ experience to the autistic experience.

It has caused heartbreak, institutionalisation, misunderstanding, trauma, disconnection in families and therapies that have caused post traumatic stress and somehow given many therapists the permission to commit violence against my autistic siblings.

I know, it’s morbid.

I know, I typically promote positive autistic identity.

But there are aspects of autistic history that MUST be understood and acknowledged.

Autism is more than a medical diagnosis to many of us.

It is both an identity and a culture.

When we consider autism from this perspective, let’s then consider how comfortable we might be as a spokesperson for another community or culture that we do not identify with.

How comfortable would you be to stand on a stage and educate others about the Jewish community, the LGBQTI community, the deaf community..

If you didn’t identify with any of them or belong to their community?

Does it seem ignorant?

Don’t get me wrong, we have some fantastic professionals supporting families, friends and carers along with autistic people.

But they are allies. They are not representatives of our community.

The things I hear, the things I read, the techniques and strategies and information passed on to families and educators around how to ‘manage’ autistic people hurts so deeply.

And now, part of my own journey since sharing publicly that I actually have a PDA (Pathological Demand Avoidance) profile of autism is to wade through all the muck I waded through as an autistic person foundationally.

Many families are missing that their children have PDA profiles, because the information shared with them in response to this is that their child’s behaviour is not ‘extreme’ enough.

I liken this to a family being told their child cannot be autistic because they’re not rocking in a corner and non speaking.

Or because their child is not having a meltdown.

We read about ‘extreme’ (what an awful, alarmist word to describe communication) behaviour in children because many families attempt to work through their children’s challenges on their own (not unreasonably) until they’re at crisis point, which is when we start seeing posts in forums, in Facebook groups and everywhere else we’re likely to find the information we’re seeking about a diagnosis.

We won’t typically read about the day to day life and/or expression of a child with a PDA profile when they’re living in alignment with their neurotype, or when their families have learnt how to support them.

Or when they have begun to recover from trauma.

Which brings me to my next point: trauma and PDA.

Our PDA children communicate with us via their ‘extreme’ behaviour that they are seriously distressed.

We don’t collate information on typical or non autistic human beings based on their most ‘extreme’ behaviour or most vulnerable moments such as crying, fist fighting, screaming, and call it ‘neurotypicalism’ or ‘allism’.

These are neurodivergent differences in communication and emotional responses to our environments that are born of stress.

Extreme behaviour is not autism.

Extreme behaviour is not PDA.

It is distress, trauma, communication.

A spectrum. I’m even now growing bothered by this terminology.

How about just being bloody human?

There are so many variations of being human.

The point?

Autism is a terrible word to describe me because it has so much negativity now attached to it, and it means ‘of the self’ in ways that have been misconstrued.

Totally misunderstood.

Pathological Demand Avoidance is a terrible way to describe me because it is focused on one aspect of what it means to be me.

Totally misunderstood.

Do not believe everything you read about my community and I.

Just ask us.

We are still human beings.

Nothing about us, without us.