After years of struggling in life, struggles finding work that I could do (adequately), struggles in housing and homelessness, not being able to learn how to drive-despite much effort and hard work I knew enough was enough. That my inability to do these things-which are pretty much required to live a decent life, have a career and be self-sufficient- was not my fault and I wasn’t lazy or unmotivated but must have an undiagnosed disability.
Ok, alright, I already had some inkling that I had a disability, but that diagnosis was never formally recorded anywhere that I could find. This meant that I didn’t have any access to support around my disability. When I was 14 and living in Sydney with Mum, I developed into what you would call a troubled teenager. I was full of confusing emotions that I couldn’t make sense of, and my behaviour was becoming what they would call ‘uncontrollable’. I kept on getting into trouble at school despite my efforts to behave and stay out of the principal’s office. It began with detentions and then suspensions and eventually I got too anxious to attend school-I became a permanent wager and wandered the streets aimlessly catching trains into the city and completely disengaged with society. I started to create a world of my own and followed the rules of it rather than regular society.
From little things big things grow. Trouble at school evolved into general trouble with the law, wanting to fit in with the wrong crowd and please people that were users and all-around crummy people. I started stealing and committing other little crimes down at the local shopping centre and the Train Station. Because of this, I was ordered by the Children’s Court to see a psychologist. He saw me for about a month and then asked to give me an IQ test to see what else was going on with me, he suspected something more apparently. The test revealed that although my overall score was very average, I excelled at some things and was immensely challenged by other things.
I had what they call a ‘spiky IQ profile’. I had a very high verbal intelligence but struggled when it came to processing speed. This suggested to the Psychologist that I had a learning/developmental disability and after assessing my other clinical features he said’ I think you have something called Aspergers Syndrome’.
My court-appointed time with him was up. I ran from this conclusion that I have a disability like my cat runs when she hears the vacuum. I didn’t want to accept it, I felt I couldn’t. Learning and mental disabilities were still very much dirty words/concepts to me, and I wanted to think of myself as capable and smart and a whole bunch of other positive things that had been taken away from me in a big gust of wind. My self-identity and self-worth had shattered and now it laid in glass shards scattered all around me.
So off course the denial and excuses began. Learning to accept yourself as someone with a disability can be like going through the stages of grief and loss. The first step in this escalator/process is denial. I denied like no tomorrow, and I made excuses like they were going out of fashion. I denied that my brain didn’t work as well as I previously thought and denied the validity of the test itself. Denial, for me, ran for a long time probably years-I wasn’t counting. It’s a good one to keep around because denial gets rid of the problem itself or at least gives you the false impression the problem has gone. No, your close friend hasn’t died, they are just honeymooning in an alternate dimension and you will be together soon.
Anger is next and anger hurts and gives you every reason to hate the world, hate yourself and hate God for making you as he did. And hating yourself is very tempting but it is also a massive burden to carry. Not to mention it is counterproductive to living any kind of healthy and sane existence. Next is bargaining: Oh, ok but at least I don’t have x or I can still y or it’s not as bad as people who have z. There is this internal monologue that goes on, comparing yourself to others, pitying others, pitying yourself being jealous of others-this vivid cat and mouse game that is being played (in graphic colour and audio) inside your own psyche. Bargaining sucks and is very unhealthy and illogical but hey it’s all part of the process, right?
Then there is the fourth stage which is depression. Sometimes I think this stage never completely goes away- really you are always skipping between the last stage and depression. (I’m not speaking for everyone, bear in mind that I claim only to speak for myself). Depression is like a bad hangover or a migraine- it is heavy. Depression for me was I want to achieve ___x but I probably or won’t depending on what exactly it is so therefore my life will always be sad and limited-a shell of a life worth living. Depression was,I am helpless and useless and life is a game that I will never be able to play well, so what’s the point? It is soul-crushing. Depression is doom and thinking that life can never get better. I am still working on and through this one. Being depressed about having a disability is not something that has an easy cure or a magic pill. If someone tells you there is one then I would recommend running far away because they are probably trying to sell you some dragon eggs.
And the last one, of course, is acceptance. I accept reality now and I accept that I have a disability. I still don’t really like myself but I know that disability is an integral part of who I am. It is not everything and does not completely define everything about me but it is there and is part of my identity. For good and bad for better or worse. I am not saying that I don’t occasionally relapse from this acceptance to depression and rarely still anger and frustration. Acceptance is far from an overnight process for just about anything and it took me more than a decade to reach acceptance with my disability.
I later did a neuropsychological assessment in my mid-twenties. And after that I found out my real disability (I think that this disability explains me in a fuller way than Aspergers does but this does not rule out them co-occurring), discovering that I had something called Non-verbal learning Disability (NVLD). Something that I found out is not in the DSM. I was still able to get support for my disability, but because there are no support groups/not for profits/ organizations this support while something I’m grateful for is something that is general and not specific-and because it is not in the DSM Psychologists and other supports tend not to have ever heard of it or how it affects people. If the DSM doesn’t include it, it is kind of like it doesn’t exist and professionals are not trained to understand its symptoms or impacts-except it does exist and is very real and tangible for the people that live with it and struggle because of the way it affects them and their ability to go through the world. The exclusion of NVLD from the DSM is not the point of this piece and warrants its own bit of writing. If you are unsure about this disability please consult the NVLD project online. They are an American Organization that is trying to increase support and awareness for adults and school children with this disability. They are also working to have it included in future editions of the DSM.
The whole point of me writing this was to be open and honest with my journey of accepting, getting diagnosed with and living with a developmental/learning disability. The many mistakes I have made and the mental/emotional impacts of my disability. I wish I had some high points to end on, but to be honest I am still working through some things and am unemployed. I don’t drive and don’t have or even see myself being in a serious relationship or having children. I still sometimes feel like I am trapped inside a brain that prevents me from living a life that brings me happiness, pride and accomplishment. I still get confused or torn whether I am being too hard on myself or not hard enough. I can only hope to grow from here……
Nick
I am diagnosed with autism, anxiety and of course NVLD.
My name is Nick, I am 32 and live in Melbourne, Australia
