33, pre diagnosis and feeling a little lost

Hi world! Lovely to meet you all!

I’ve just got off the phone to my GP. And thats after a gruelling 3 ½ hour wait from 11:30am to 2:30am on the line to the National Autistic Society waiting to speak someone about what I am about to tell you.

“Theres nothing that I can do, stick with the private therapist and ask them to send me some details of what’s going on’.

These are the first words from my NHS GP when I told them what’s been happening these past few days, and in my life. I poured my heart out.

I only called to ask for some understanding I would be looked after. To get some clarity on the situation and to involve them in the process, that I may choose to go down. 

And I wonder, if those are the first words to me, no wonder we have a mental health, and health and social care crisis.

So after the last few days, which you will hear about, I phoned the National Autistic Society to get some answers and they were very helpful.

The doctors though come across like my mother.

They just want to sweep mental health under a carpet, and I am in no way saying being on the spectrum is a mental health issue when I say that.

But it feels they just don’t want to lend their hand out, and these are from the first impressions for the short less-than 10 minute call.

First impressions are everything right?

In the last few days I’ve just opened the door that leads me in to the world of Autism, and Autism Spectrum Disorders.

When I open the door, I feel as if I’m being lured in to getting a diagnosis, being accepted for who I am and why I exist, and why I do things the way I do, and why I communicate the way I do. I feel liberated that in my search for answers, I can rest knowing I have found them.

When the door is closed I feel I am trapped. 

Trapped in a world of privilege.

Trapped in a world where I can’t communicate.

Trapped not knowing how to interact with people and being mistaken for a ‘normal’ person. Just because I have a full time job, drive a nice BMW, have money in the bank, and can write good English and communicate, does not mean all this does not come with problems. Huge problems.

When the door is closed, I find myself getting the urge to go for formal diagnosis. 

The road to this point has been long, and very very bumpy. And I haven’t even gone for a formal diagnosis yet.

I do not remember ever having tantrums as a child. In the last month, I have had 4. Once a week. Sometimes more.

When people hear the word tantrum they think of an out of control child. Well, the tantrums I did have, and have had all my life, have been internal ones. I just found a way to hide this, sort of, internalise the tantrums.

And this led to exhaustion. The pure stress of a situation is more than the feeling of stress associated to a stressful day at work for e.g. 

For me, these tantrums and these stresses, would suck all the life out of me, where I lose sense of all my senses. And when the mask is removed, I cannot function. On the outside, I may look tired, or for a moment lose focus in my work. And internally, my body feels as if its power is being sucked out of it, and all that is left is a soulless body which does not process compassion, or empathy, or have any understanding of what’s going on.

I have had 4 tantrums in the last week. A lot for me. And this has left me feeling confused as to what is going on.

The only association I had with these feelings were comparable to the ones I get when I am in a social situation. And I have flashbacks to what it was like growing up.

I started to then hear a voice saying, ‘It’s Autism. It’s Aspergers’.

I am in a good place with work. I also want to study. I want to go for my degree. I don’t want to drop out though, and I want to complete it but the idea of writing essays, and doing exams just makes me so anxious, and I started to wonder whether or not I had or have dyslexia.

So I contacted the Northamptonshire and Buckinghamshire Dyslexia Foundation and on the first consultation I spoke to a lovely lady, Pam.

Pam asked lots of questions and from telling Pam what I have told or am about to tell you in this journal, Pam identified that I may certainly have dyslexia but also it could be associated to Autism or in the Autism Spectrum.

I spoke to my therapist and he completed an Adult Autism Spectrum Quotient Questionnaire which came back 39. And now I’m finding myself opening the door to this new world, with so much information and paths and doors that are opening that I’m getting even more exhausted and confused. But also equally happy and liberated I have an answer after all this time. The answer by no means means I have a label but more of an understanding and acceptance. I feel as if I have been told I’m going to be a parent but I don’t know how to look after a child. I want to have skills and things in place so I know how to be the person I have wanted to be in those situations that exasperated what I now know as Aspergers. I want to be able to live with Autism/Aspergers.

I have experienced trauma in life and to help understand and create a better life, this caused me to seek therapy and I have been seeing a psychologist for two years.

No one picked up on Aspergers or autism in my life. I have known I have been different and have found social interactions exhausting, I’m insular, I like to do things on my own, I find it hard to communicate openly, unless you’re safe - and in my eyes, if you’re a professional, or a colleague that I know, you’re fine, and you won’t pick up on how I truly am. At work when presenting information I would work to a script. I find it hard to have open discussions around goals, any topic, to aid an authentic conversation and people say conversing with me can feel professional and deep and counsellor type. I am very poor in interviews too. 

So for the next chapter of my life, even though therapy has helped me, I’m now finding a voice in my head saying “it’s autism” when faced with situations and although the mental awareness is helping, I’m finding myself in a forest with so much information and thoughts I just know what to do.

I’m not good with small talk. I never have, neither do I cope with spontaneous conversation.

I have never opened up about these feelings.

The signs have been there all my life, it’s just that no one picked up on these feelings in a serious way.

I always knew there was something different about me than other people. And different to everyone I would ever meet.

I just never knew the difference was so profound to warrant a label.

I always thought we, the human race, and each one of us, sees the world differently, and I rather took this as a given. 

I think there were a number of different reasons why people wouldn’t pick up I have Aspergers or Autism - I have a full time job, I can drive, I am independent. I definitely knew I was autistic before I knew I was gay though.

I was in lower sets at school, and I was quite insular. I found it difficult to communicate with others in a meaningful way, and to make friends. I liked routine and repetition. It was quite clear I was autistic early on. This was picked up by my school teachers but nothing was done about it.

I really struggled academically and socially. I found it difficult to keep up with my peer group. I think this was exacerbated by being gay. I was at mixed gender school at the time, and was trying to figure out my sexuality, as well as being on the spectrum. I didn’t make friends quickly and I was insular.

I went to college, and it was here that I really began to step out of my shell. College was much more relaxed than school, and more of an understanding environment. Even-though my racial identity and sexuality came in to question or rather I was bullied for it, I was able to build up my confidence in social settings. But I really found it hard to maintain a life with different groups of people and it was at this time that we moved from London to Milton Keynes, and it was the time I came out. Right before uni.

As a gay British Indian autistic man, it’s almost as if I have several identities. I have my LGBTQ+ identity and my autistic identity. Sometimes they both merge well together, and sometimes they don’t. Then I have my work identity, and work-friends identity, and my personal friends identity. 

An example of when they don’t merge so well together is when I want to mix all my friends from everywhere to go on a night out. This doesn’t work. It’s like my close friends are my security blanket and I want to share everything with them. 

When I’m in a work setting, I often find it difficult to go in to interviews. The company will have very inclusive rhetoric and an active network when it comes to their LGBTQ+ staff. However, the rhetoric around autism and other disabilities is often lacking, or perhaps less mature. You feel accepted for one side of your identity, but the autistic part of your identity is perhaps less recognised or understood.

Going back to me, what people don’t know is that I get too anxious if I don’t have a routine or if my routine is interrupted.

They don’t know that if stress is heightened it triggers a multi sensory overload, similar to a tantrum. 

What people don’t know is that small talk is the bane of my existence.

I really struggle what to say to people.

I don’t have a favourite actor, movie, food.

I don’t want to know who you’ve been in bed with.

I don’t want to talk about my sexual life.

I don’t know what to talk about.

I have so many scripts.

A lot of people say that talking to me is like being in an interview. 

I need the security of what to say to people. And so, some conversations become very deep.

Sometimes I would get to the end of the social script and I would get lost, and then the conversation would die because I wouldn’t know what to say next.

Socially I can be awkward. Sort of not say anything.

I could put on a mask and blend in, to match the accent, the crowd, but I would lose the sense of myself, and this is what I have become accustomed to.

To save me from being bullied and not accepted.

But when the mask comes off I am exhausted.

I have to give thought to what to say, how to engage in conversation, where am I going to be. 

Most people won’t even give this a second thought.

After I have come home from social gatherings I would suffer from what I call social hangover. It’s similar to depression. I feel numb. 

This is the case whenever I meet new people in work, after the work day, at the gym, anything longer than an hour.

I have an eye for detail.

I am honest.

I can’t say a comforting lie.

I can’t pick up on jokes. Or sarcasm. To the joy of people.

I can’t banter.

I take things at face value.

If all this means I should go for diagnosis…should I?

For today, I feel I have some answers to the preliminary thoughts. 

Let’s enter this world, without a diagnosis, and let’s see where it takes me.