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Initial Problems

My initial assessment for autism took place this week, here’s how it went…

Before

I’ve never been too nervous around medical appointments. Indeed, I prefer a trip to the dentist to a visit to the barbers. You’ve got your mouth wide open at the dentist so there’s no scope for small talk. Give me that over the inane chat in a barber shop any day of the week. No, I don’t want to tell you what I’m doing at the weekend or where I’m going on holiday. And I don’t think you really give a toss! Just cut my hair quickly and I’ll leave.

Sorry I digress; I was saying that I don’t get too worried about medical appointments. When I got my confirmation through for my initial autism assessment I was almost entirely calm about it. For a start, it was progress. I was fortunate that I didn’t have to wait too long for my appointment (I’ve heard some horror stories about people waiting years).

To further help matters, I had a week in Spain booked for the 7 days prior to the appointment. I’m not one to ‘turn to drink’, but a week of generous amounts of alcohol, sunny weather and lots of fun with the family is a pretty good way to partially take your mind off things. I still had my usual holiday ‘moments’ and that’s a topic that deserves a post to itself, but all in all it was ideal timing ahead of the appointment.

 

On the day

I didn’t enter full on ‘panic mode’ until the actual day of the meeting. Suddenly it was happening and I had no idea what ‘it’ was.  The invite letter was pretty vague – ‘Initial’? Does that mean there are going to be a few of these appointments? Is it just a fact finding meeting? Do I need to take anything along? Will I get any results on the day or later?

Without wishing to sound overly dramatic, this was about my entire future and past. I was on the path to finding out that I (potentially) had been living with a condition for my whole life.

My wife accompanied me to the meeting, which was a great help in stopping me from getting too anxious.  The venue was a Victorian townhouse that reminded me of a dentists. There was a basic reception area and various practitioners’ rooms around the building.

art assess communication conceptual

Upon arrival, I had to complete a long assessment form whilst sitting in reception. It was pretty similar to various online tests I’d completed and sent to them previously. I guess they were just checking for consistency – although being consistent can be tricky when your answers can depend on your mood.

After this, we went through to a room that was similar to many counselling rooms I’ve sat in over the years. My assessor was a woman who looked about half my age – admittedly this is more a reflection on how old I feel, rather than how young she looked! What followed was an hour of questions relating to my emotions, childhood, senses, my thoughts and so on. It was essentially an elaboration of the online tests I’d done. But the 121 setting gave more scope for qualitative answers and probing follow up questions. My wife chipped in a few times as I struggled to think of good answers to some questions. The woman was good at her job and let me talk as much as I did or didn’t want.

It was pretty exhausting mentally, but at the end I was left with the feeling that I hadn’t fully got my ‘case’ across. I hadn’t fully explained my thoughts and feelings. On a few occasions I wanted to just ask her to look at this blog for further information! But I guess she knows more about these things than me so was just getting the information needed.

The conclusion was that she needed to have a meeting with other practitioners to go over my answers plus the various tests I’d done. In a few weeks I’d receive a letter outlining the best help they could offer – be that 121 sessions or group workshops aimed at giving me support.  In terms of diagnosis, that depended on whether there was a clinical value in diagnosing me. So again, I really don’t know what’s going to happen

She said I had plenty of autistic traits, but obviously couldn’t commit to saying anything further.  We left and went to Aldi to buy a cheesecake.

 

Now

It’s now 2 days later, and I’ve gradually got more anxious and worried about the whole thing. For a start, I hate waiting. I know, it could be worse, but I’ve had some progress now and I want to keep that momentum going. Secondly, I also hate uncertainty, what will the letter contain. How can they help me? Will I get diagnosed? Will they tell me that actually I’m not autistic at all?! In which case I’d need to change the name of the blog to ‘My Adult Adventure’, which sounds like something entirely different!

photo of head bust print artwork

I’ve previously written about my reasons for pursuing a diagnosis , now I’m a step closer to finding out more about myself. And I guess that’s a positive. I just need to focus more on the positives, which isn’t easy when your brain isn’t programmed that way.

Yet another tale of depression

This is my personal story of depression and how it’s impacted my life.

This is primarily a blog about adult autism, but the crossover with depression is a pretty common one. Are all autistic people depressed? Absolutely not. Are all depression sufferers autistic? Of course they aren’t.  But there is often a strong correlation, so here’s a look at my ongoing issues with depression…

It’s not easy to write something original about personal experiences of depression. As I’ve alluded to before, it seems like 90% of Z list celebrities have ‘opened up’ to a newspaper or magazine. I’m just going to tell it like it is for me. This is my personal experience of depression and how it’s impacted my life…

We all have low spells, times when we think the whole world is against us and days when we don’t want to do anything. I had plenty of those in childhood and the early years of my adult life, but as with some of the autistic symptoms I displayed, I just dismissed this as ‘me being me’ and it was my normal.

The problem is that as you get older, responsibilities increase.  Bills, maintaining a home, having a career et al are all constant issues and cannot be forgotten with a quick tantrum or a day in bed. That is often (and is in my case) when depression comes to the surface.

 

So how does ‘falling apart’ manifest?

Coping with important stuff has never been my forte, especially when there’s a roadblock. Failing a job interview or not even reaching interview stage is something that I find almost impossible to deal with. I feel worthless, unwanted, stupid and a failure. Putting things into context is really tough for me, I take things personally and literally when it’s not appropriate. It’s part of my neurodiversity – the inability to think normally and practically. My brain has a set way of thinking and that sometimes causes problems.

Adult Autism blog

I struggle when I make mistakes in everyday life. Like really small stuff – forgetting to put the washing machine on, getting into the wrong gear when driving or anytime I forget something. My self-regard goes through the floor and I feel really useless and upset. This is something that has been a lot worse in recent years due to the aforementioned increase in responsibility that comes with adult life and fatherhood.  I need everything to go smoothly and when it doesn’t, I fall apart and my self-worth evaporates.

Generally speaking I can still function to an extent. I’ve only ever had two spells of depression that have stopped me going to work (whether I should have had more is debateable!), and only one that was more than a couple of weeks.

I’m pretty good at ‘masking’, so can put on an act for work and small talk, which at least creates the illusion that I’m relatively ok. I don’t turn to alcohol, binge eating or drugs. I’m not abusive or violent, and I don’t cry very often. That’s the good news.

 

Pause for thought

I used to do marketing work for a counsellor. She did a lot of corporate presentations and would always use the following analogy to explain stress.

We all carry a metaphorical stress bucket around with us. In the bucket we have screwed up bits of paper on which we write the things that cause us stress. So standard stuff like bills, relationships, your terrible football team et al will be in everyone’s bucket.  Having a few issues to stress us is good, keeping them bouncing around in the bucket is perfectly healthy.

The problem is that sometimes you can have too many pieces of paper in your bucket and the bucket overflows. And that’s when people get ill through stress.  Plus, we’re all different, ergo we all have different sized buckets, some overflow more easily than others.

When the bucket overflows we breakdown. Too much stress leads to anxiety and depressions. That then leads nicely into a talk about resilience training and how you can help minimise the risk of your bucket overflowing

Writing these blog posts has caused me to revisit this concept and it’s made me realise that there’s another major issue that causes the bucket to overflow. Being neurodiverse often means that one stress can open up many other stresses. For example – I worry about bills, that leads me to worry about money, that leads me to worry that I don’t earn enough, that leads me to worry about my career choices, that leads me to worry that I’m wasting my life and so on. Basically, I’m printing out stresses and there’s no pause button!

The net result is that the bucket is constantly overflowing, and that equals long term depression and anxiety.

 

Back in the room

The bad news is that I’m completely energy-less, devoid of any enthusiasm, I can’t concentrate, I struggle to muster any interest in anything aside from just sitting on my own, I can’t see anything to be positive about, I’m terrible company (insert joke here) and I’m very easily aggravated. The end result is that I just feel extremely sad.

You see, my brain just refuses to switch off or forget about negative things, no matter how minor they are. Everything plays on my mind. Sometimes a fun conversation, a good tv programme, playing with my daughter or playing/watching sport can lessen the issue for a bit. Sometimes I just want to spend a chunk of time on my own. But it’s very much a case of a short term cover up.

Adult Autism symptoms

It’s a negative spiral – my brain causes me to overthink, thus making me think negatively and become anxious, thus making me feel worthless, thus making it harder to think positively. Repeat repeat repeat. It’s not a huge amount of fun, and a lot of the time there’s no way out. You just end up going round in circles and feeling low for days on end.

A mantra I often say both to myself and people close to me is that I just want everything to be simple. No complications or hassle and I can function ok. I don’t mean that I want a boring life, far from it. Just one that I can manage with no complications. Then I can get through life. Of course, life isn’t that simple and it’s impossible to make it so.

I take medication and have regularly counselling sessions. I think they help, but it’s impossible to really know. There’s no visible healing, so I’ve no idea how I’d be feeling if I stopped going to counselling or taking tablets. The whole process of getting an autism diagnosis will hopefully help me get the correct medication and assistance going forward.

 

How can you help?

This is something I’ve had a few people ask me. It’s difficult. The big thing that depression sufferers struggle to convey is just how bad they feel. There’s no bandage, cough or physical scar to show off your illness. Most of the time it’s invisible, and despite awareness being better than it’s ever been, mental illnesses still don’t get regarded in the same way as physical ones.

If you’ve never had depression or extreme anxiety then it’s pretty impossible to fully understand how it feels. All I can say, aside from the above, is that it’s the worst feeling I’ve ever experienced and not one I’d wish on anyone.

This post, as well as my others, is trying to help people understand what it’s like, so I guess the best way you can help is to read this blog! Which sounds like a cheap plug, but honestly reading this can be a great help. As can sharing it and trying to bring it to a wider audience.

So when you see somebody at work or at home behaving out of character or being quiet or perhaps lacking patience, you can understand that it might be a consequence of their mental health.

I could write hoards more on this topic, and maybe at some point I will. But for now this can serve as an overview, not an especially cheery one but there you go. It’s an important part of my life and hopefully adds a lot of value to the blog.

thank you text on black and brown board

Thanks for reading, and you’ll be pleased to know that after that rather heavy post, next time I’ll be lowering the tone somewhat by writing about the 2010 World Cup!

 

Why do I bother?

I’m roughly 95% certain that I’m autistic.  To all intents and purposes I’ve accepted it.  So why should I bother getting an adult autism diagnosis?  Why put myself through an already stressful process, especially when stress is a large part of my problem in the first place?

An adult autism diagnosis doesn’t fundamentally change who I am, so why not just plough on, comfortable in the knowledge that I’ve got a handle on some of my mental health issues?  In short, what can I gain?

I’ve reached this point in life without even considering adult autism. I’ve got a family, a mortgage, a job, friends and even 6 4 goldfish. So why do I need to go through the hassle and complications of getting a diagnosis?

All of these thoughts went through my head before I found myself in a doctor’s room a few days after my ‘lightbulb moment’.  In that time I’d reached my conclusion, via lots of research, chatting it through and plenty of self-analysis. In the end it came down to 4 main reasons:

  1. Getting the right support

There are different categories of autism – as far as I can make out, these categories change sporadically, so by the time I get diagnosed I might have something that doesn’t exist at the minute!  The specific diagnosis will help dictate what support I get going forward. Do I have ADHD? Aspergers? Or something else?  Because my mental health is rubbish, getting the best appropriate support is essential. It’ll help me understand what I need to do to get the most out of life and be happy.

When I get nearer to diagnosis time, I’ll talk more in-depth about the different types of autism.

group hand fist bump

  1. Other people

If I am autistic, then that’s me and who I am. It’s also how I come across to other people. In no way is it something to be ashamed or embarrassed about, but it is something highly relevant to my behaviour and attitudes. So whether it’s a case or ticking the autism box on a job application or trying to explain to a friend or loved one why I’m acting in a certain way, being ‘officially’ diagnosed is really important.  I’m not sure what I think about autism “defining me”, but it’s clearly hugely relevant to who I am.

  1. A happier future

The last few weeks have seen me analyse my past in a way I’ve never thought of before. Why was I the way I was as a child? Why has my career panned out the way it has? Why do I bite my nails? Why do I suffer from anxiety and depression.  The list is endless. For better or worse, my life would have turned out very differently had I been diagnosed as a child. I can’t do anything about that, but getting diagnosed can have a positive impact on my future. Be that, career wise, social life, home life or the general health and well-being of myself and people close to me.

  1. The 5%

What if I’m not autistic? What if I’m just highly introvert, a bit weird and depressed? Then what? Getting a positive diagnosis would help put these fears to rest and enable me to get a greater understanding of who I am and what I can do going forward. Notknowing for a absolute certain is something that causes me anxiety, so getting closure on that is important.

 

In conclusion, I needed to find out. Like most mental health issues, the NHS employ a postcode lottery system. This means you have to hope for the best and be prepared for a lot of waiting. When my doctor agreed that I needed to be referred she told me that the average waiting time in my area was 4 years!!!

Sorry, 3 exclamation marks are a lazy writing device. But seriously, 4 years!!! That’s the gap between Olympics or World Cups. 4 years is a US Presidential Term. It’s also the regularity of a Corpse Flower blooming, but that seems to get a lot less media attention than the other things. Basically, it’s a very long time! It’ll be 2023 in 4 years’ time. 2023!!! That sounds like the setting for an absurd futuristic sci-fi film. My doctor is a hologram!!! The Rock is running for the US presidency and Brexit is still being negotiated.

I wasn’t happy with 4 years as a waiting time.  Without boring you with the tooing and froing that then took place – my doctor was very helpful by the way – she eventually managed to get the referral to a place that would get me seen within 3-4 months (I hope!).

 

Pause for reflection…

2005

I applied for an internal promotion at the company I was working for. It was a perfect fit for me. The job spec was all stuff I could do well. It was work I would enjoy doing and it was a decent pay rise. I got an interview. I was happy with how I performed in the interview. I didn’t get the job. I was annoyed. I wanted some feedback.

The gist of the feedback was yes, I did perform well and my answers were very good. But there were three reasons why I didn’t get the role. My body language, my lack of eye contact and the fact that other candidates appeared to ‘want it’ more than me. I was even more annoyed.

photography of a person pointing on something

I didn’t for one second dispute any of those statements in terms of their factual accuracy. I struggle to maintain eye contact with people (the middle distance is my friend!), my body language isn’t great (arms folded is a go to) and I do struggle to convey passion and emotion when I’m talking – especially to people I don’t know very well.

My annoyance was with the fact that any of that mattered. Who cares if I’m looking someone in the eye? Who cares if my attitude isn’t the best? I can do the job and (I think) I’m the best person at doing it.

My manager explained to me that all of the above factors WERE important, but I really struggled to process it. I was confused, upset and angry. I’m not great at processing information in those circumstances. I’m also not great at ‘getting over it’, so occurrences like this weigh me down for months and stop me having a positive outlook.

Variations of this issue have plagued me throughout my working life. In all honesty, even writing this now, my brain still doesn’t really ‘get it’.  Why should it matter?  The whole ‘work thing’ merits at least one full post, so watch this space.

 

 

Back in the room

And that is where I am at. Waiting. I hate waiting. I hate being late. People being late makes me anxious. If I’m meeting somebody who is always late, I’ll be slightly late myself to try to negate the issue. Traffic, delayed trains, bus stops…all put me on edge. If something is going to happen I want it to happen…now!

I’d be lying if I said I wasn’t scared. I feel like the future is a bit of an unknown at the minute. What’s ‘wrong’ with me? How will I live with it? What help will I have etc etc. But equally, I’m trying not to see it as a negative. There are a lot worse things that somebody can have, and I really hope that a diagnosis and subsequent support can enable me to thrive in the future.

I’ve opened up a can of worms and my brain struggles with that kind of analogy!


I feel like I’ve touched on a load of issues in this post. Work, home, my past, my symptoms, counselling, mental health et al. Think of it as a little taster for what’s to come.

I’ll be going into far greater detail on these areas (and many more) in future posts, as well as covering off my thoughts and experiences as I go through this journey.

But next time I’ll be getting to the crux of the matter – what makes me autistic?