This story starts in my childhood, with the struggles I and many people who knew me faced each day with my difficulties and the resulting behaviours. Back then I just thought I was naughty and a bad person, a view that was fairly common, but not held by all. I was lucky to have parents that chose to take me into their home and treat me like their own son (they still do). They tried very hard to help me but nobody really knew about Aspergers then, it would still be a few years until Lorna Wing’s work would have its impact on the Autistic world. I ended up in a children’s home just before my tenth birthday and then boarding school for children with behavioural problems.
It wasn’t until I became a parent and my son started to find interacting with the world difficult and distressing; followed by getting his diagnosis of Asperger’s syndrome that I started to learn about Autism. I can’t say it was like a light bulb going on when I linked my son’s presentations, what I was learning about Autism and my own struggles. It was more like a slow insidious creep towards realisation, crawling through an ever resisting undergrowth of denial and embarrassment. I couldn’t possibly see myself as “disabled” and the thought of others thinking I was deficient in some way, that I was less or incapable was terrifying to me. The only thing worse was the thought that others, particularly my wife would think I was lying or faking it (a fear that is still all too real). A battle raged inside, was I Autistic? Had I found the missing piece of the puzzle? Is this why I didn’t fit in, why the world didn’t make sense or why others didn’t understand me? Surely this would mean there was more to it than just being unlikeable, bad, unpleasant and annoying. Sadly you can’t just put nearly forty years of reinforcing a view of yourself behind you just like that. Years of being blamed, feeling blamed or assuming blame. All the times that I berated myself for being the heinous and foolish person that ruined it for others, going too far and causing upset and pain. I was the one that wasn’t supposed to care about others or myself. The one that got “angry” at others when things went wrong always hiding the fact that it was me I was angry with, me that I hated. Now it could be this thing that did it to me. My self loathing wasn’t going to give up that easily.
It screamed at me, “you’re selfish, everyone knows you’re just jumping on your son’s bandwagon”. “You can’t stand that he’s getting the attention, that people love him even though he struggles”. You would deny him that love, that inclusion and acceptance, taking it for yourself. The other part of me screamed back “no I love him”, “this is who I am, I’m not a bad person, I just need help and understanding”. On it went one then the other, guilt followed by pleasure; happiness by despair.
I trawled the internet for information, reading thousands of pages from papers, Blogs and forums, watching every video I could find. It was an obsession (still is). I would find the answer; learn everything there was to know. That would solve everything, I would be fine again. I had linked the wish to be Autistic with finding a solution and selfishness, because it would make me feel better. The desire to not be Autistic was about being “normal” and finding excuses for everything I had done wrong in my life. It was tearing me apart, why couldn’t I find the page, video or opinion that just said, Mike your Autistic.
If I couldn’t find the answer on the internet or in books then I would have to branch out. Time to ask those that I cared about. Carefully though, it might get messy. What if they just said, don’t be silly and didn’t listen. That didn’t happen, but they didn’t say yep, bang on you nailed it, lets go find out what to do next. No if they loved me they said that’s possible, maybe we can look into it. Some of that fits and over time it shifted to, I agree I think you are Autistic. Others varied from outright dismissal and refusing to talk about it, to polite scepticism and questioning all the way to attacking any suggestion that I could be Autistic. There are only so many times you can hear “everyone’s a bit like that” or “you managed it before”. It was demoralising. My wife and son were terrific and incredibly supportive. Work was a nightmare; then came the letter that I thought would end everything.
At this point if was 5 years since my son’s formal diagnosis, I was rationally sure that I was Autistic and identified as such. My employer however was not sure and not happy. They wanted to know for sure, it was time to put up or shut up. They insisted that I seek a diagnosis, the implication was, it’s this or lose my career. The letter went further though it asked a question that scared me to death and sent me spiralling into oblivion, or so it felt. They were not sure if someone who was autistic would be able to even do my job, this despite the fact I had been doing it for nearly 5 years. What did their uncertainty mean? if I was Autistic did I stand to lose my job and with it my career prospects, income, home and a large part of my identity? If I wasn’t then it was me all along, was I to blame, was it all my fault. Did it mean all the pain and upset was me? Surely then I wasn’t different I was bad?
They didn’t get it, why was I so anxious and oppositional? They just wanted to keep me and themselves safe and to help. That’s not how I saw it, they wanted to change everything, I was going to lose it all my world was spinning wildly out of control. Bad enough if it’s just me. Although I wasn’t to bothered about me, depression was taking a firm grip and dealing with that. My wife and son though were along for the ride, they would crash along with me and I would be responsible yet again for hurting others. I was supposed to love them, I had promised to take care of them. Bloody hell what’s wrong with me why do I hurt everyone?
NO, this is not how it was going to end. I might be a mess on the inside and only slowly coming apart on the outside but I wasn’t going to just plunge into the depths of despair I was going to do this, I was going to take everything I had learnt and I was going to get I diagnosis. I am not a bad person. The only reason I could do this was my wife, she is everything to me. When I couldn’t go on and was being engulfed by the darkness she stood by me, held my hand, turned on a torch and dared the darkness to come any closer. If I faced an uncrossable chasm, she built a bridge. A towering wall and she produced a ladder or just got a sledgehammer and knocked it down. Throughout she held my hand and never let me forget that I was loved.
The diagnostic process for me spanned 8 months, the terror never left and neither did my guardian. First the GP (Medical Doctor), why do you think you are autistic, tell me about your life. Then a referral to the mental health team, why do you think your Autistic? Tell me in excruciating detail about your life, oh and do you mind if there’s four of us? Not at all the 30 minutes in the waiting room with loud strangers has got me so close to a meltdown that I’m not sure how it is that I’m able to even talk. After an hour of questions I have no idea what the doctor looks like am physically and emotionally exhausted and exhilarated. For the first time somebody (who doesn’t love me) has uttered the words, “I think you are Autistic”. On to the next step.
Next was an Autism specialist and more of the same questions, it feels like a series of tests each giving you the right to take the next one if you pass. The final step the appointment with the doctor who’s going to either say yes I’m Autistic or no I’m not. There is now even more forms and questionnaires for me and my family. I didn’t think I had anything to learn about my childhood I was wrong. It opened my eyes, talking to my Mum about things like not calling them Mum and Dad or using people’s names until I was 8 or 9 years old.
When the day finally arrived my biggest concern was being laughed at, I was sure the doctor would spend 20 minutes with me and then ask me to leave. Telling me that there was no possible way I was Autistic. The appointment lasted for the whole afternoon and my wife was with me for all but the last hour and a half. I found it to be a very challenging afternoon. Just when I thought I had made it through the very nice doctor asked me the question that removed the last of my emotional control. She asked if I was lonely. How to explain that I am lonely but that it has nothing to do with being alone or the love I have for my wife and son. I didn’t manage to, I just cried.
At the end of the assessment, my wife alongside me again the doctor told me that I would get her report in about a months time. but though she could tell me that she would diagnose me with Autistic Spectrum Disorder/Aspergers Syndrome. I didn’t lose my job after this and the world didn’t exactly fall apart either. It’s nearly a year and half now since my diagnosis and what I have come to realise is that what I thought would be the end of a journey was just one more step in a much bigger one.
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Aspie and Proud