Observing autism vs being autistic: it’s not the same

Before I knew I was autistic, I was only observing autism. This may seem like an odd thing to say as I’ve always been autistic, but I was masking 24/7, and my internalised ableism at the time meant I was viewing everything through a neurotypical lens as the “right” way to experience the world. I was extremely detached from my authentic autistic self.

Many people are proclaimed as autism experts, but very few (if any) are actually autistic. Even though I’ve always been autistic, I feel I have experienced both sides by observing autism through working in the education sector before discovering I was autistic and learning who my true self was. The two are very different, and I think it’s essential to have this conversation as the two polar opposites seem to blur in the mainstream autism discourse.  

If you are observing autism, you see it from a surface level, I often see the iceberg analogy used which I personally like. You see the behaviour but may have little to no understanding of the different factors that lead to how others are interacting in this world. 

However, many are unaware of the iceberg analogy and will make snap judgements of people based on what they see. And this was my introduction to autism. “It’s the autism making them behave that way” “Well… that’s just autism isn’t it?” were daily expressions I heard when I was knowingly interacting with autistic people for the first time from the neurotypical professionals. 

They only could see autism from the top of the iceberg and didn’t consider what was happening underneath. When this is the only narrative you hear, and you’ve been subconsciously denying your autisticness since three years old because of masking, I sadly started to believe the misinformed stereotypes many people had about autism. This is why Internalised ableism can be damaging to people around you too, and not just to yourself.

Reflecting now, I initially thought that traditional responses would help, which was incredibly ableist. I was expecting young autistic people to respond to a neurotypical world in the same way I did because of my internalised ableism. I should have considered the world from their perspective rather than what the “professionals” were telling me based on their assumptions. 

The advice we were given had no consideration for lived experience, which is why I strongly advocate for it now. Any training has no significant input from autistic people. In that case, damage can be done (to be honest, it will be done). We see things that neurotypical people don’t, and we can give insight into why behaviourism and other traditional views harm us. Viewing autism only through a neurotypical lens, you will only see the tip of the iceberg and ignore how autistic people experience the world. Only autistic people can give an authentic account of what it’s like under the iceberg. 

So what was the turning point for me?

As I discovered my neurodivergence and eventually received my autism diagnosis, my view of autism was certainly changing drastically, as I had such a narrow understanding before, like most of the general public has now. I couldn’t see autism in myself until I became aware of the concept of masking and camouflaging. 

I had been in denial of how masking and camouflaging can be so damaging to an individual’s self-esteem and mental health, including my own. Before being aware of my autism, I assumed everybody masked in the same way that I did, and it was simply something we all did. I now know this is not true and as my denial started to dissolve of how masking was destroying me, I made the cognitive shift from observing autism to being aware of my autistic self. Before, I only saw the top of my iceberg, where now I’m still learning about what is going on deep beneath the surface. 

I see this as my turning point, as being aware of my authentic autistic self has made me seen the harm and abuse traditional schools of thought have on autistic people, particularly autistics who are part of more than one marginalised community. The professionals who claimed to have the best of intentions were perpetuating more harm than good when I listened to what they were saying through the lens of my lived autistic experience. I used to trust all professionals, that has undoubtedly changed….

It’s only through this personal journey I’ve learnt that observing autism (even if you’ve spent a lot of time with autistic people) does not remotely compare to being actually autistic. 

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