Be careful what you wish for…

Be careful what you wish for…

…because you just might get it.

When I wrote about autism for the first time in 2010, I felt a bit like I had to justify myself through my son’s diagnosis. I explained what we went through to get him formally diagnosed, and how through that process, I’d come to suspect that I have Asperger’s Syndrome. However, some sections of the autistic community don’t accept self-diagnosed Aspies as “legitimate”. It seems that there are many people who do a couple of online “autism tests”, then declare themselves to have Asperger’s syndrome.

Because of this, I’ve been hesitant to write about it further. I wanted that formal diagnosis. Everything that I read, and the reflections that I saw in my son said to me “this is you, too”, but I wanted a clinical psychologist to sit across from me, and tell me that it wasn’t my imagination.

At the end of 2013, I finally found myself sitting in a little room facing the psychologist who didn’t say the words I wanted to hear. “It’s not called ‘Asperger’s Syndrome’ any more. Since the release of the DSM-5 a few months ago, it’s now called ‘Autistic Spectrum Disorder’ and you’re most definitely on that spectrum.”

There it was. It was official. It felt weird; while I could no longer technically think of myself as an “aspie”, I was now the owner of one (1) autistic spectrum disorder diagnosis.

Leaving that appointment, I felt as if I was walking on air. I felt vindicated and so relieved. I wasn’t imagining things. I really do see the world differently. Relationships are harder for me, and that’s OK!

That sense of relief lasted for about 12 hours. The next morning, I felt like my world had fallen in.

What I didn’t realise until it was too late was I’d actually been hoping I was wrong. Buried under everything else, I’d been hoping that with the right technique, or counsellor/shrink, the right prayer, or a miracle drug, one day everything would shift and fall into place; all the things that seem to come so naturally to others, but slide right past me, would make sense. The constant sensory weirdness and little tics I constantly had to work at hiding would disappear. I’d no longer have expend energy trying to appear ‘normal’ (aka ‘Masking‘). Relationships would no longer be mysterious; I’d know the right thing to say most of the time. I’d know when to pick up the phone, and the “how” & “what” of making and being a friend. I’d finally be able to feel that friendship, that sense of connection to other human beings.

In that moment, I discovered that I’d had that hope, and that it had been irrevocably torn from my hands. I will never be “neurotypical”.

In “As Good As It Gets“, Jack Nicholson’s character asks “What if this is as good as it gets?”; I found myself staring down that barrel. This is it.

At nearly 40 years old, I realised that all of the time and energy I’d invested in trying to hide all of my “weirdness” and attempting to “be normal” seemed to have been wasted. I could have invested it in learning new skills, or becoming deeply skilled in something. Anything else. Something that might have made me more valuable to an employer.

For many years I worked under the theory that if you’ve got a high enough IQ, constantly take in seemingly trivial information, and process conversations fast enough, you can appear relatively normal through a “brute force” approach. In day-to-day life, I’m constantly assessing situations and running them through a set of internal filters, to come up with the right responses.

At the age of 12, after seeing a story on TV about “body language”, I bought the author’s book (that’s pretty normal, right?). I tried to develop interests outside the narrow range of things I was interested in, and at the very least, store the information away for future reference. I constantly soaked up information.

What I didn’t realise until it was too late, was that the behaviours were always running in the background of the computer inside my skull; there is a cost to “normality”. There’s no such thing as a free lunch. The more information you take in, the more you need to sort and assess. The more people you relate to, the more you have to remember. That constantly-on-always-processing ‘brute force’ takes far more energy to maintain than I’d realised. On top of that, the older you get, the greater the cost.

I feel like being autistic has cost me in other ways, too.

2017 was an absolute shocker of a year.

Personally, the tremors started in late 2016, when the company I worked for was sold to another company; I was hired by them, and promoted into a position I did not feel I had the necessary skills or training for. I don’t cope well with change (something that’s common for most of us on the autistic spectrum). These changes drove me into the worst anxiety I’d ever experienced, and a few weeks later I was sitting in the doctor’s office begging for help. I was prescribed an anti-depressant. Two months later I spiraled into a deep & dark depression that nearly ended my life. I went back to the doctor, who increased my dosage and referred me to a psychologist. In turn, that psychologist uncovered something that I’d been trying to avoid for the last few years, but that’s another blog post.

I had made no secret of the fact to the GM who hired me that I didn’t feel that I was ready to take on the position he was offering, but he told me believed in me and I’d do fine. With the medication keeping the anxiety down to a dull roar, I gave it my best. Unfortunately, it turns out that my best wasn’t good enough.

By late 2017, our new GM had come to the same conclusion that I’d suspected; I was offered a different position within the company, that I have since taken.

On one level, this was a relief. Every day was a fight to keep going and try to manage the mountains of information that were coming at me.

On another, I felt crushed; “If only I was ‘normal’, this wouldn’t have happened.”

Even now, over four years after being diagnosed, I’m still trying to come to terms with what it means to be autistic; to accept myself as I am. I want to see my strengths, but all I can see are my weaknesses and failings.

But wait… that’s not all. Along with anxiety and depression, another condition that is often co-morbid with autism is ADHD. While seeing my current psychologist, I asked if the fact that I felt constantly distracted and struggled to maintain focus (something I’d complained about to multiple psychs over the years!) could be ADHD.

She responded with a shocked “Wait! I didn’t tell you!?! YES! We need to get you on medication.”

So this is where I find myself at the beginning of 2018. Autistic; medicated for anxiety, depression & ADHD. Sober for 444 days. Still trying to understand who I am, and how I fit into the world. I’ve been trying to write this blog post since I was diagnosed; indeed, over half of the post was written in March 2014. I plan to write further about autism, so this is my “coming out as autistic” post.

But there’s something else…

That will be my next blog post, and it’s kind of a doozy.


Also published on Medium.

  • Warwick, your blog will soon be added to our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description.
    Thank you.
    Judy (An Autism Observer)