Story 7 : My struggles with acceptance, social media and the autism “community”

By Pip

I was diagnosed with autism at 31 years old and like many, it was a long battle to get there. In many ways it was an unknown battle: I thought I was anxious, depressed, overly emotional, and a person with a low pain, light and sound threshold. I had no real friends and school was hell. 

I heard about the ‘female’ experience of  autism on the BBC news, a few years prior to my actual diagnosis. At the time, I was attending CBT (Cognitive Behavioural Therapy), but this final attempt at seeking help before reaching out to a psychiatrist was proving to be unsuccessful. I had reached a point in my mental health battle where I was beginning to overthink everything: ‘Am I making mountains out of mole hills? Am I over-exaggerating? How can family issues be this difficult to solve?’. 

These thoughts continued to consume me until I finally came across this particular autistic woman’s story. Her experience caused a light switch to go on in my brain: although not everything was a perfect match, it was the closest I had ever come to hearing someone explain to me how I felt. Of course, that’s when I went digging…you know the rest…I’m sure you have all been there. 

I explained to my CBT therapist that I thought I was autistic, but her response was simply to test me (a 28-year-old) on emotions. As you can probably guess, I was soon discharged from this service and nothing more came of it. Despite this, this potential diagnosis kept niggling away at me, so I kept on searching for more answers. 

A few years later, when I was certain that I must be autistic, I went private and got diagnosed. I’m impatient; I couldn’t deal with long waiting lists. Working as a researcher in autism, I am used to reading countless amounts of papers on this topic, but having to look at it from a personal perspective was bizarre. 

For me, that was only the beginning of the journey. Unfortunately, I thought a diagnosis would make me feel better; sort out all of those feelings of inferiority. Initially, it may have enabled me to justify my actions, my life, my choices, but I was letting it define me. I used autism as an excuse, living through the diagnosis. It’s hard to explain, but check out Instagram and you’ll see what I mean…

Living through this diagnosis was just as devastating to my ability and my sense of identity. I almost wanted to become the autistic person that was presented on instagram or twitter: overly opinionated and an ‘advocate’. In my opinion, these platforms fail to consider that this presentation of autism is not applicable to everyone ‘on the spectrum’. I wanted to find a community, a family. I wanted to fit in. I struggled every day, however my struggles appeared to be romanticised, glamorised and ‘quirky’ on instagram.  

Ironically, I lost sight of the fact that autism is a neurodevelopmental disorder. Yes, I said ‘disorder’, not a ‘variation of normal’. These phrases contradict scientific literature, which educate people about how autistic people have: different methylation markers, abnormalities in certain brain cell numbers, different levels of proteins, abnormalities in  white matter structure, and defects in synaptic pruning. Through social media I got lost in my hatred for neurotypicals: a game of ‘them’ against ‘us’. It was official, the blame game has started. My struggles were apparently because of systemic “ableist” discrimination, but this disregarded the simple fact that autism is a  neurodevelopmental condition and my struggles were not only because of the society around me, societal acceptance wouldn’t fix me. Research is needed for us to understand this disorder more. Research may be the key to finding acceptance. 

I broke down. The community I had so desperately wanted to be a part of was something I didn’t agree with. I didn’t agree with self-diagnosis – I think it should be a stepping stone to getting a diagnosis, I didn’t agree that we shouldn’t try to improve outcomes for children with autism – if you can improve a child’s prospects, why wouldn’t you? What scared me the most was opinions coming from self-diagnosed people: what if they had got their diagnosis wrong? Could that be doing more harm than good? I understand the counter arguments, I know people will say I am the issue, I am part of the problem, but for me the community was/is one sided, disregarding opinions like my own, rebuking me. I had lost myself in something I didn’t agree with. Now, I am on a journey back to find myself, whoever that may be. 

I have written this story because I believe that a different voice is needed. Acceptance for me is acknowledging the fact that I have a disorder that makes me different- not better, not worse, just different to the 99%. I will struggle with this disorder for the rest of my life, but I accept it, I embrace it, I laugh at it, I cry at it and most importantly, I value it. But I am one of the lucky ones. I can “function”, I can get a job, I can get a PhD, have a wonderful career, and have breakdowns in the comfort of my own home as opposed to in the middle of a supermarket. I can manage, but I know of many who can’t. I forgot to value the range of severity when I was only shown one thing on social media. The people advocating never considered the importance of discussing severe autism, and to lose sight of them is both reckless and selfish.

I worry that if autism is disregarded as a different “neurotype”, we will miss the chance to make life better for the few who really need actual support. Yes, biases still exist, but advocate to improve research focus and diagnostic outcome. Treatments and cures shouldn’t be viewed as eugenics- they could improve a person’s quality of life. Autism isn’t just autism, there is a spectrum. I am fortunate to fall in an area where I don’t struggle with the day to day as much as others do. 

You may feel as though this is getting too opinionated, but without writing my story down and voicing it, can I really be accepted by myself? 

Ultimately, what I want you to take away from this is that autism isn’t always what it looks like on social media. That’s one person’s story, one person’s lived experience. There are many who don’t choose to share, but their stories are just as real- don’t forget that. I did unfortunately get caught up in this, but now I’m on my next journey to figure out who I am when the community I see doesn’t represent me or my values. 

I did initially struggle with my diagnosis, I didn’t relate to many of the people on social media and support groups. My acceptance is to just be me, and not try to advocate on behalf of anyone but myself, as how can I understand anyone else’s experiences? I want to get on with my own life, not dwell and surround myself with all my differences and define my life by them. This is allowed, this is also what acceptance looks like.

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