The dark side of getting a diagnosis

I’m a strong person. I always have been. Strong willed, strong minded with strong opinions.

I’m brave as hell and I’m tougher than I appear. But I don’t always feel strong. Some days I feel like I’m made of glass and I’m holding all the pieces together to stop them from giving way and shattering in a pile where my feet should be.

These are the days where I seriously question what the hell I was thinking when I decided to pursue my Autism diagnosis. Some days I even regret it. Deep down, I do know in my heart that getting diagnosed was the best thing that ever happened me. Pre-diagnosis life was a mess. The bullying, the abuse, the fractured relationship with my family and the never ending revolving door of friends and acquaintances all of whom quickly reached the limit of what they were willing to put up with.

I’m not shifting the blame onto my Autism. I’m responsible for my own actions and behaviour as are the others that were involved, but discovering the root cause of my different way of thinking and interacting with the world definitely helped bridge some serious communication gaps. Learning that I’m autistic also helped me discover the key piece of my identity that I didn’t know I was missing.

Still, sometimes I find myself entertaining the possibility that I may have crossed an irreparably damaged line.

I opened the box and there is no going back.

Pre-diagnosis life was hard but post-diagnosis life has brought with it a whole host of things I never saw coming.

I didn’t know what ableism was before. I didn’t know that there was a word for that disgusting feeling that comes on when I’m treated as less of a person for being different and for daring to assert my basic human rights. When I experience marginalisation, it feels worse now. It was always there but now it has context.

I didn’t know to expect bullying, harassment and outright condescension over how I refer to myself. I definitely didn’t expect to be scorned by other members of the Autistic community over the way I use the terms Autism and Asperger’s interchangeably. Oh and the endless lectures on labels! Ugh.

The sting of the “You can do anything you put your mind to” comments also caught me by surprise. Don’t you understand that I first need to know that I’m OK just as I am? That I am good enough and worthy of respect? Do you honestly think that telling me that will reinforce complacency? That I’ll just sit around and achieve sweet fuck all because you said it was OK to be me?

I never thought I’d be in a situation where everything I say regarding my own brain is taken as a lie. I didn’t know that getting diagnosed was only the first step and that it would be my job to not only educate those around me but do so in the face of constant disbelief. To always feel like an obnoxious child that always has an answer for everything. To be told that I can’t take criticism from my family because I didn’t just sit there, smile and take it. Because I had the nerve to offer additional context or take the conversation as an opportunity to educate. Speaking of education- the constant uphill battle to educate everyone from airlines to my next door neighbour is frankly exhausting.

I also never thought I’d be surrounded by people who think it’s ok to tell me what my needs are or worse have conversations about my needs as an autistic person without me being present. It’s wrong and deeply dehumanising.

I’ve learned the hard way that disability stigma stinks like shame and doesn’t come out in the wash. People tell me on a regular basis to conceal my diagnosis and to never tick that box on a job application. Never, ever utter the ‘A’ word.

Discrimination both actual and the potential for scares me. I’m not paranoid enough to believe it to be the sole driving force behind exclusion and rejection but there’s always a brief whisper of it in the back of my mind if only for a second. Equal opportunity doesn’t always happen in practice. We’re talking about human beings after all. I knew that before my diagnosis, I guess I’m just more conscious of it now. The lip service paying PC brigade frustrates me. Follow through and action is what really matters. Stop talking about it and start actually affecting positive change.

The hateful side of disability advocacy shocked me too. How dare I speak out against inequality and stand up for my rights and those of my fellow Autistics. The trolling and the hate mail weighs heavily on me.

Pre-diagnosis I was considered rude, inappropriate, the family black sheep and an all round monster. I exposed corrupt and broken systems, called out gross negligence and incompetence and never ever treated someone differently to win favour with them. I treated (and still do) everyone equally and I’m my own authentic self 100% of the time.

Was it easier to just be a monster that no one liked or wanted to invite to Christmas lunch? Was ignorance a better experience? Is this the price of discovery?

I don’t feel this way all the time. Just sometimes. And I’m wondering if other late diagnosed neurodiverse people experience this too? I know that there’s some confronting stuff in this post. But I feel this level of honesty is necessary. We need to start having more honest conversations about the real issues and problems faced by people who are different. Getting my diagnosis definitely had its positives, but there’s a dark side too that cannot be ignored.