"This Is My Truth, Tell Me Yours"
(Manic Street Preachers)
It has been just over 5 months since I received the results of my Autism Assessment. I don't want to go through the referral or assessment process here as The Wife has already done all that here. I remember the 3 months I was waiting for the results. It was basically me convincing myself that I had managed to “fail” being autistic. That I wasn’t autistic. I wasn’t disabled. I was just a little eccentric. They were going to say to me, “you are close but don’t quite hit the mark”.
I had a strange level of cognitive dissonance about it all. On the one hand I was almost certain that the result would be positive. This is because firstly, all the tests I had done have told me that I hit the criteria. Secondly, my son is Autistic, and he’s got it from somewhere and it certainly wasn’t from The Wife. Thirdly, whenever it was mentioned that I was undergoing an assessment every single person would respond, “oh yeah, that makes sense.” Not one single person told me, “no, that is not possible”.
Anticipatory Anxiety
All of the evidence was telling me that the result was almost a foregone conclusion. Yet, I did have a small bead of hope that I wouldn’t meet the criteria. I didn’t like that I may be thought of as “different”. Thought of as someone who had a disability. When I look back now, yes, it’s glaringly obvious I am on the spectrum but, for almost my entire life, I thought I was relatively…‘normal’.
I am a natural born introverted self-critic who wants to burrow into obscureness and not need to bother anyone. If I was disabled, I’d have to ask for help and support. I’d have to bother people.
The Wife was with me at the assessment, and she was by my side for the results. Before the appointment we noticed that my ticks were firing. My anxiety sky high and we had to have pit stop at the nearest coffee shop because my hatred and fear of being late meant we’d arrived an hour and a half early. I was distracted by everything. A possible job interview besides me in the coffee shop. The fact that if it was a job interview the man was in a t-shirt and jeans. To the far right of me, geographically not politically, was either a first date or another interview. A man and a woman were chatting, and it looked really formal. I also had a nosebleed. These are becoming more common, and I’ve come to realise that they are anxiety related. It’s great being me. I was constantly checking the time and saying to The Wife “we need to set off soon, we need to go” despite having ample of time and being less than 5 minutes away from our destination. Anxiety is fun.
We arrived nice and early (obviously) and there was a young lady there waiting for her own appointment. She went into the same interview room I had my assessment in. I could hear everything she was saying. Talking about her struggles with self-harm and suicidal thoughts. I felt immensely uncomfortable and lachrymose. I began pacing the small corridor as The Wife followed, never giving up on helping me to ground and distract myself. I kept coming back to the guilt that I’d overheard part of the lady’s therapy session. I had no right to be listening to that! Why would I do that? What is wrong with me? This lady was baring her soul and struggles. No one deserves to have their privacy invaded by me like that. I was always met with the ever-persistent comment from The Wife, “there’s a difference between listening in and overhearing something”. But just my presence, in the same building at the same time was robbing her of her dignity and privacy. And I hated myself for that.
The man who’d carried out my assessment (let’s call him X because I have forgotten his name) arrived and led me and The Wife into another room. It was a long, rectangular space. The walls lined with desks and shut down computers. The walls an off white and a number of posters all sporting the NHS logo clumsily dotted about them. X asked me whether or not we wanted to just, dive straight in. And because we did want to dive right in we said, “yes”.
He held up a white, A4 envelope, handed it to me and said:
“this is your report, and you do clearly meet the criteria for having Autism Spectrum Condition”.
I asked, “how autistic?”, like he would tell me exactly where I was on the spectrum. “Well Sir, you are at number 45345 on the spectrum scale” or “you are in the turquoise zone of the spectrum rainbow chart”. I don’t know why but, I wanted a number, a definite position which I could use to anchor myself. When I heard the results, I felt sick and, according to The Wife’s brilliant blog, I shut down. I made minimal eye contact, was monosyllabic in my responses and became focused on some of the wording of the report. X spoke and The Wife spoke. Just like two normal people just having normal conversation, well isn’t their life just great. I took small amounts of the conversation in. On the drive home I felt a mixture of things. It was as if all my thoughts had been thrown at a wall and nothing would stick. I felt like I was drowning and then I’d feel nothing at all and then I’d feel like I finally had some clarity. Basically, all my emotions were all over the place.
A big issue I had (and in many ways, still do) was trying to work out what parts of my personality, my struggles at work (current and historic) were due to me or due to my, now confirmed, autism. Am I a person with autism or am I just autistic? What parts of me are autistic and what parts are just me? Now I know that I have this disability, what support do I need? What support could I get? I didn’t know what help I needed. And I didn’t know what struggles were as a result of my own failings and what was down to being autistic. I didn’t know how autistic I was, and I still don’t. The difference now being that I know this doesn’t matter. Something I still really struggle with is that I don’t know whether my mental health issues are down to, genetics, not liking myself or not being diagnosed. Do I not fit in the world because it isn’t built for me or because I am a ridiculous person? If my personality and my autism was a Venn Diagram, would it just be a circle?
Initially, I viewed my autism as a curse. It was not and never would be a superpower for me. Autism was a bungee cord tied to the wall of my life. It would prevent me from moving forward because it would always pull me back. I’d work hard, try hard and do my absolute best but, nothing worked. I was destined to fail.
And now
Five months down the line I definitely view autism in a different light. My diagnosis gave me clarity, it explains so much. The Wife has said that often it’s like a weight has been lifted from me. I have an explanation for my struggles and my behaviours and am able to dust off some of the guilt and shame I carried for so long. I look in awe at The Boy (our son) who really is thriving with Autism and ADHD. He is a loving, sweet, kind and considerate boy who never fails to make me laugh. I don’t think I experienced so much joy until The Boy came into my life. Everything he does fills me with an indescribable pride. I am working hard on turning that lens onto myself. I’m not there yet but I am a damn sight closer than I was.
Receiving an autism diagnosis as an adult can be a profound and transformative experience, bringing both relief and a mixture of emotions. It's important to remember that this diagnosis doesn't define you but rather provides a new lens through which you can understand yourself better. Embrace this journey with self-compassion, seek out supportive communities, and know that many have walked this path before you, finding strength and fulfilment along the way. Your unique perspective and abilities are valuable, and this newfound understanding can lead to greater self-awareness and a more authentic, empowered life. If any readers want to reach out for more information or just vent, please don't hesitate to do so.
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