Brian & Autism Injustice

I was diagnosed with autism-spectrum when I was about 10 years old. I’m a hyper-sensitive person, that is my largest obvious trait. I also have learning difficulties. For example, if I am learning something new I have to attend a classroom as I have trouble absorbing “on-line” classroom scenarios. Once I understand and have a passion, I often excel better than a non-autistic person. I am extremely creative.

Gender-wise, I’m a non-binary individual which enables a very colourful spectrum of meaningful relationships. I had my heart broken in my teen years which took me well into my 30’s to get over. I’ve lived through the rest of my life missing him a lot. Life goes on and I’ve met equally wonderful people (men & women) but never experiencing mutual feelings. Sure, I’ve broken a few hearts also but I’m an all or nothing sort of person.

Family expectations of getting married, have kids, produce grandchildren for parents. Some of the most hurtful comments have come from my own family: “It’s Ok to be gay, It’s not OK for my son”; “But I had you to have grandchildren”; “you’ll never be happy”; “so how does it feel for your father to hang with the next door neighbour’s son and not you?”; “you don’t want to be one of those”; “the arse is only for one thing”; “Have you got your lace  knickers today Brian?” Simple comments on the surface, but degrade and makes one feel “less than”. It takes one focused young person to raise hold their head high whilst feeling forced to lie in their teenage years to satisfy family and peers.

I always say, “I don’t suffer autism, but I suffer most humans.” I think autistic people are the normal, the “majority” lack the ability to be straight talking and honest. I feel the pain of other people, I often have a tear when I watch world events against human rights. I see most people as self-absorbent, looking to make things ONLY easier for their wider community and their own beliefs.

I forgot about my Autism in later life. In approximately 2010 with social media taking over, I couldn’t understand how to adapt my company marketing. My brain started misfire and pain set in.

For years I was stuck on anti-depressants which stabilises you but makes you not very coherent or creative, most chemically lower your sex drive. I was saying consistently for years to family, friends, doctors, professionals that I wasn’t depressed. I knew there was another problem wrong with me. My brain wouldn’t fully kickstart like a sparkplug needed replacing.  

Well, I eventually became depressed, from everyone telling me I was. No one would take me seriously. When you are desperate, you just want to get better, you’ll do anything even if it is against your better judgment. You become sick of people being disappointed with you or staying away as they don’t know what to say or do. Some friends also like serving tough love to help you on your way, I still don’t understand what went wrong.

I say, tough love is for people that have no clue. They have no idea but lots of opinions and want to be seen to be doing something. So selfishly they can feel better about their own self and as a collective. Reach-out for me? Never again!

My integrity was crushed beyond imaginable belief. A once self-made entrepreneur sociable workaholic, a shadow of myself. Heartbroken, that people and authorities were not listening or being reasonable from my perspective. I was the eye inside the storm, I never really asked for anything during my life, but what I needed at this point of time was everything.

I couldn’t stand to see everyone look at me so differently. So, of course, you do as the professionals say as I had no-one reliable to count on, my “friends” were already out the door at this stage.

I was asking doctors to lower my anti-depressants as I felt they were stifling my recovery to a stand-still and sometimes backward. I’m a very creative person which subconsciously helped my autism. Doctors would reply that they wanted to increase my doses.

Then, before my mother passed, she gave me a great gift. Mum reminded me of my autism treatment and diagnosis when I was at school. I just agreed, I thought she was mistaken. Then after the painful events around my mother’s death, six months after, I was in meltdown from being treated unreasonably by health professionals in the United Kingdom.

What made me realise was I was autistic was a burst of bad behaviour (approx April 2016), and thought to myself “that’s the noise an autistic person makes”. I remember a memorable sigh, knowing instantly, my autism was my key to recovery that I was so desperately searching for.

I stopped my anti-depressants immediately without my doctor’s consent; it was such a liberating feeling. My head was clearing. Within days I could feel myself becoming more “alive” and my creative “juices” starting to flow once again. I knew within myself my recovery was now underway.

I slowly started to remember some details of my childhood treatment. My mother picking me up one afternoon a week from school and attending sessions at the Royal Newcastle Hospital (Australia). I also remember my teacher had noticed a change in my behaviour. She didn’t like my new self-confidence within the treatment I was receiving during diagnosis.

Important Note: This is my story and I do not recommend for any person to stop taking their medication in any circumstance without doctors consent.

Unexpectedly with my finding, sadly no remaining friends seemed excited for me. I assume they were tired of my cycles and being a different personality of what I was previously. I isolated myself well before this from my self-disappointment. From remaining friends, I received from the likes of “I work with autistic people, You’re not autistic”, “everyone is autistic”.

In addition, more hurtful were professional life coaches telling me: “Don’t tell anyone that you’re autistic, they won’t take you seriously”; “you’ll always use it for an excuse”.

All I have to say is if you don’t understand yourself, how can you function?

The worse insult came from a stand-in GP when I asked for specialist help for my autistic spectrum. He swiftly said “No, CBT (Congrel Behavioural Treatment) is the best treatment for autism too.”

I reiterated to that GP, CBT was a shambles previously and remembering my autism spectrum was the key to my recovery. He ignored me. 

No immediate help was available, but he did write a name and number for substance abuse on the back small screwed up receipt which baffled me. I had to move on without him, friends, family or bureaucracy listening to me.

Luckily, he wasn’t to become my new GP at this new medical practice. My new doctor had an interest in mental health. She listened and gave me the “breathing space” I explained I desperately needed away from the bureaucracy trying to “herd” me into a certain space of “Club 101”.

Now I was consciously aware of my autism, things suddenly made sense. I could really start to recover and even laugh at myself. That’s why I felt I had such good friends, we’d do this all the time. It was a way to accept your genuine flaws.

This sounds really basic but laughing at myself was always my best relief. When that was stolen from me, I now know I looked for other ways to relieve my pain.

However, not remembering my autism diagnosis cost me my soul and dignity. Increasingly I found it impossible to engage with the fragmented systems for systems, civil servants and essential services provided by the NHS. Their harsh judgments and sometimes absurd remarks I couldn’t respect as it showed they were not educated or accepting of my life.

This breakdown, as a gay male – or more gender fluid (Inter-Sex) as I’m discovering has been a shambles, there are no other words. I have been bullied (and at worse, abused) by mostly council and government organisations including NHS Trusts and other programmes.

I have a whole lot more to say on the horrendous experience and subsequently abuse that I have been subject to by all authorities involved, but this is not the purpose of this brief.

Lack of understanding (arguably due to no 1st hand experience) by bureaucracy has fed my autism to the point of self-destruction. It still does to this day as still, I find the NHS and bureaucracy still do not want to listen, learn and/or take responsibility for their arguably reckless actions when it comes to my experience. I hope to educate them rather than stay angry so they will treat other adults with autism much better without the pain and also losing a good chunk of their lives within the process.

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