Diagnosis Story 8: I understand me better now

Today’s story is from Allan MacBain, a Scottish IT Specialist, with a serious special interest in Genealogy, who made the best of limited resources for adults in his region and managed to eventually receive an official ASD diagnosis in his 50s.

“through it all, I just thought I was nothing more than a geek, kinda weird, guy. Which most of the people I knew would agree on.”

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Arran Sunset, Scotland (pictures courtesy of Allan)

Allan’s Story – Background:

I’m a 53yr old male Scot, living in South Ayrshire, Scotland. I’m married to a woman of infinite patience (okay… maybe not infinite, but close). And I work as an IT professional.

I’ve always felt I was the ‘odd one out’, the outsider, the one who didn’t – couldn’t – seem to make friends. The alien. That there was something wrong with me; ‘cos no-one else seemed to be having any issues connecting with others.

Figuring out the subtext of conversations – heck, starting a conversation – was a minefield for me. I didn’t have a clue. There had to be unwritten rules I wasn’t picking up on; or that I somehow hadn’t been told about.

I didn’t seem to feel the same emotions as others, either. Family members died; friends of parents & siblings moved away; things happened; but I was mostly unaffected… except for once in a while… then something in me would break, and everything would pour out – deep anger, excruciating emotional pain – for about ten minutes at a time.

I don’t like changes to plans; have great difficulty making decisions about how to, for instance, clean a room. I can see everything that needs to be done… but, where the heck do you start?!? It used to be I was really early for every activity I was going to (my wife would say it’s a pity I don’t still do that), and I was definitely heading towards OCD with some of the things I was doing, when I was a teenager; but I managed to head that off. There have been other symptoms throughout the years; but I developed coping mechanisms for most of them.

I was able to work, although I didn’t seem to be able to last more than five years in a job; until my current one, that is. I just never seemed to ‘fit’ anywhere.

But, through it all, I just thought I was nothing more than a geek, kinda weird, guy. Which most of the people I knew would agree on.

AllanMacBain-headshot1

Why did I start thinking about getting a diagnosis; or, as far as I was looking at the time, an assessment?

My nephew was diagnosed with Asperger’s Syndrome – which was later changed to a full Autism diagnosis – and my sister started asking ‘Why?’. When he was very young, she thought he was nothing more than a ‘typical MacBain male’, as she puts it. Comparing him against our father, our younger brother, and me. The more she looked, the more she wanted to know… so she did a Masters Degree investigating Asperger’s Syndrome and Autism Spectrum Disorders. During the study for her Masters, she kept prompting (nagging!) me to approach my GP (General Practitioner – Doctor in family practice), to ask for a referral to my local Mental Health Services, to get an Adult ASD Assessment.

I kept putting her off.

My wife, and friends, had also – for quite a few years by then – called me ‘Sheldon’ (in jest, they said!). I kept threatening to get a t-shirt made up with the slogan “I am not Sheldon!” on the front. And that would have continued, if not for a holiday my wife & I took in Japan, a few years ago.

Along with another family member, we travelled to Tokyo, Japan, for a two week holiday. We were booked into a hotel in Shinjuku – home to the busiest railway station in the world (5 million people transit the station each day), and the busiest pedestrian crossing in the world. As we had rail passes, we travelled through Shinjuku Station regularly. And you would think, being the busiest station in the world, that I would have had some ‘issues’ there, if anywhere; but that wasn’t the case. Shinjuku Station is split over many levels, and there are a multitude of routes through it – so, even in the height of rush hour – I was fine. Shinagawa Station, on the other hand, just along the line from Shinjuku – but still in Tokyo – was a major problem… which hit me out of nowhere, on the day we travelled to Hiroshima.

I had planned that day’s trip, getting all the times and platform information we needed, the day before; but everything started to unravel the moment we arrived at Shinjuku, to pick up our tickets. The teller didn’t speak much English – which was unusual for Shinjuku – and, due to work taking place in the station, my time & platform information was wrong. Then we couldn’t find the platform we actually needed to leave from, to get to Shinagawa & the train we needed to change to, for Hiroshima; but a kind passenger pointed us in the right direction.

By the time we got to Shinagawa I was starting to come apart; although I didn’t know it at the time. I was communicating in monosyllables and grunts. Pointing, and gesturing, rather than speaking. And then we got off the train at Shinagawa, turned the corner to go to the platform for our connection… and walked straight into a wall of people!

I froze. Solid. I couldn’t move, and I couldn’t communicate. Completely unresponsive. Stuck. My wife, after trying to get a response from me for a few minutes, had to take me by the hand and lead me out of the station, to a quiet garden nearby. Something she’d never had to do before. I’m sure it freaked the other family member out, too. It took me nearly half an hour to recover, to the point where we could continue our journey.

After that, it still took me several months to make an appointment with my GP, and request a referral to Mental Health Services. But, in the meantime, I did a fair bit of research; including taking a number of Asperger Tests.

Oh! Very high score. Maybe there’s something to this after all.

Oh! These interests I get intensely focused on (Genealogy; Theology; Photography; Reading; Webcomics)… they could be ‘Special Interests’, and that’s normal? Wow!

Oh! Not looking people in the eyes is a typical symptom of ASD?

Jumping into the middle of a conversation…

Not making friends…

Not understanding…

And – what turned out to be my coping mechanisms – seemed to be breaking down.

As soon as I asked, my GP forwarded a referral… and the wait began.

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Prestwick Beach (pictures courtesy of Allan)

Diagnosis:

Well, that wait turned out to be pretty short. In December 2015 I received a letter asking me to attend an outpatient appointment at National Health Service Ayrshire & Arran, Mental Health Services, Arrol Park Outpatient Resource Centre, in January 2016, for an Initial Assessment. (And could I kindly fill out, and bring with me, the enclosed forms. Thank you).

On the appointed day I went along to the NHS A&A MHS Outpa… stuff that! I went along to Arrol Park, okay? After an hour’s session with a clinical psychologist, she informed me that I was most likely on the Autism Spectrum, and that – if I wanted to proceed, she would arrange for a full Adult Autism Assessment; but that it would probably be over six months before I got my first appointment.

In December 2016 I received a letter from Arrol Park, apologising for the delay in arranging an appointment. Apparently, the clinical psychologist I’d seen had left the service, and the recommendation for my Adult Autism Assessment had been ‘lost’… did I still want to proceed? Darn right I did! I wasn’t getting any better; if anything I was getting worse!

Very shortly, thereafter – before the end of the month, in fact – I received an appointment letter for January 2017. (I think they were panicking, in case I made a complaint. The Scottish Government were ‘pushing’ mental health that year, so they would have been in trouble for not ‘meeting their targets’.)

January 2017 – Here we go. First appointment, with a new clinical psychologist; and it was more form filling,followed by starting to complete a ‘standard’ questionnaire. That was ‘standard’? The questions were all in psychologist terms… very difficult to understand, and answer. The psychologist had to interpret them all for me, and help with what they actually wanted to know. Only reached half way through, by the end of the session. “Come back next month & we’ll complete it then.”

Answering the questions necessitated dismantling the coping mechanisms I had – unknowingly – built up around what the questions were about. I was in a very bad way, when I headed to work, after the session. I’d only taken enough time off for the appointment & travel time. Bad idea!!

February 2017 – Completed the second half of the questionnaire. More dismantling of coping mechanisms! One of the big ‘things’ about the standard questionnaires the psychologist seemed to be running through, was that they needed input from people who knew me as a young child. Hey, my parents are still alive… I can do that!

“Can they come here?”

Dad’s in his 80’s, and mum’s approaching 80. So.. no; I don’t see them travelling all the way down here, from where they live. Sorry.

“Here’s a questionnaire for them to fill out. Can they get it back to me for next session?”

Did not head to work after this session. I had some smarts, and had taken a half day off, this time. I needed it! Not smart enough, though… I was still in a bad way, by the time I went in for the second half of the day.

March 2017 – Talked through the replies on the questionnaire Mum & Dad had completed & returned. Psychologist couldn’t use most of them, as they weren’t relevant, or in enough depth. Why? ‘Cos Mum & Dad hadn’t had a friendly Clinical Psychologist to interpret the questions for them, that’s why! Sheesh!

Anyway… more questions; more dismantling.

“Would your wife be willing to attend a session, on her own?” Probably. I’ll ask her.

“We’ll make that next month’s session, if that suits. And then we’ll get you back the following month.”

Did not head to work that day. At all. I learned my lesson. I went home and crashed!

May 2017 – Talked through the results of my wife’s questionnaire. At least she had someone to interpret the questions for her!

More questions; more dismantling.

Clinical Psychologist to discuss my case with her colleagues.

Back next time for the ‘results’.

Home. Collapse. Ugh!

June 2017 – Diagnosis.

Here we go!

High Functioning Autistic Spectrum Disorder.

“Okay? Right. Please fill out this questionnaire.” (checks for suicidal tendencies)

“That’s it. Thank you. Have a good life.” Okay… maybe not those words; but that was the sense of it.

You’ve got a diagnosis, lad. That’s what you were here for. See ya! No offer of additional sessions, to help deal with any after effects of the prior sessions, or reactions to the diagnosis. No information on available outside support services.

Nothing.

Bye!

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Prestwick Beach (pictures courtesy of Allan)

Personal effect:

June 2017. A couple of weeks after  receiving the diagnosis, I had two meltdowns: one of them spectacular! I was not coping; as all of my coping mechanisms had been thoroughly dismantled… and I had no clue how to rebuild them.

I couldn’t communicate with my wife, and she was highly frustrated by the whole process, and the effect it was having on me. It took having a meeting with a friend from church, who has been involved in dealing with people on the Autistic Spectrum for many years, to start getting thing sorted out. Including making sure I got back in contact with NHS A&… Arrol Park, for additional support.

An appointment at Arrol Park was arranged very quickly (inside a week, before the end of the month); and both my wife, and I, attended. The upshot of that was twofold.

1 – They promised to send out a formal diagnosis letter. “You didn’t get one? I’m sure I dictated one.”

2 – Another appointment was arranged for me, on my own, with the clinical psychologist. To try to start rebuilding my coping mechanisms, and to discuss what additional support was available.

July 2017 – Final session. General discussion on rebuilding techniques. Discussion on the Adult ASD diagnosis process, and the disruption caused to existing coping mechanisms – “Just going through the questionnaires did that? Really?” Yes. Really! – They had to rely on the generally available (poor) adult diagnosis methodology; as they had no in-house experience.

Was handed a printed copy of my formal diagnosis letter; as I pointed out that I still hadn’t received it. Was advised of additional local support for Adult ASD – none! They barely had any mechanisms for performing Adult Autism Diagnosis; never mind post-diagnosis support.

Kids? No problem. Adults? Pppppbbbtttthhh!

Final Message:

Overall, I think it was worth it. I have a written, formal, diagnosis.

There may not be any organised support local to me; but there is a load online.

(Thanks Paul!!! Your blog & YouTube channel are godsends!)

I’m slowly rebuilding my coping mechanisms; better than they were, as I have some understanding of what’s going on, now.

My wife & I are getting better at communicating; but we still have bad days – actually, we have some cracking train wrecks! – doesn’t everyone?

I understand me better now.

No, I’m still not Sheldon! I’m Allan, nice to meet you – yes, I’m a geek; yes, I’m weird; but I’m me, and I’m slowly getting to know me.

And finally – to quote Maxim 70, from the “Seventy Maxims of Maximally Effective Mercenaries” (by Howard Tayler):

“Failure is not an option. It’s mandatory.

The option is whether or not to let failure be the last thing you do.”

Allan MacBain MBCS

Associate Genealogist (UK & Europe), Clan MacBean.

Baen Barfy – I read “Baen’ed” Books!

 

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