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Living with Autism

Getting a formal diagnosis for ASD to get support

A tough day out to see the GP and get a formal diagnosis so I can access services. Also, I need help dealing with my depression now.

It’s a foggy and cold start to what is unofficially called a ‘hump day’ and dreading how the next hour of my life may unfold. Of course it means I am running through possible scenarios, which I categorise as high, medium or low in likelihood.

It starts with trying to predict how long I will have to endure waiting amongst actually sick people in the busy waiting room, leads my thoughts to what wonderful new variants of the common cold I could pick up and ends with total confusion as to what I should actually say to my GP to get the ball rolling. After all, neuro-typicals don’t like a blunt approach and while he is my GP he is also a human being, so I aim to be considerate.

After having been diagnosed with autism spectrum disorder or ASD by a counsellor during my attempt to save my marriage a few years ago, I now need help from our national health service (NHS) who kindly created a new ASD support service locally. I won’t be able to access it without jumping through some hoops first – another thing that fills me with dread because of its uncertainty of process and outcomes.

User experiences

I wish these things were more clearly explained and when I raise these things in general most answers tend to be along the lines of: “It’s clear enough to me? What are you talking about.”. 

While this is likely true for neuro-typicals, when designing user experiences and guidance for people with ASD, more care should be taken to provide the information in a manner that helps the person the services are accessed by in a more ‘accessible’ way.

One such example is as simple as ‘checking in’ at the GP practice where the only touch screen is hidden behind what I perceive as moderately annoyed patients waiting to talk to an available receptionist.

With both routes of access effectively blocked, I opt for what I feel is the least painful option and ask the person closest to the screen to move a little. Of course the touchscreen is covered in many patients finger prints and my mind races with ideas of the many wonderful specimen of bacteria and viruses present to collect.

Once the system confirms my arrival it omits whether my GP is on the same floor as it or perhaps lurking upstairs. Another thing to process and worry about… .

I still end up queuing to speak to a receptionist because part of arriving early means I have time to book an appointment for a flu shot. Sadly the website nor posters at the surgery inform me of how to actually book – something I believe is most effectively done online. 

Waiting

I am thumb-typing these thoughts while waiting in the upstairs area, which I determine has the highest likelihood of meeting my GP. I decide to simply state why I am here when I am finally called forward:

I would like to get support with and officially have recognised my autism spectrum disorder diagnosis, please.  I am suffering from depression currently, which makes day to day functioning very challenging too.

What are the next steps? Whom do I speak to and how long until I get help? 

Just some of the follow up questions in my head and all things that are probably available online somewhere. In fact, I should probably google harder or smarter instead of complaining so much.

The good thing is these services exist and they are free, so shout out to the wonderful NHS who despite strategic underfunding by the conservative government has staff that look after people in this country. While a fair number no doubt suffer depression from burn out or experience other symptoms themselves, mental health is notoriously neglected in our society and help is hard to come by while asking for it still feels like there is a massive stigma attached to it.

Why does an otherwise healthy and high functioning adult male in his early forties need help with his ‘mental’ health? 

Because my ASD makes me constantly anxious about everything I cannot process fully – like everyday communication, navigating unfamiliar environments or dealing with social situations.

Getting more worried

It is now seven minutes past my allocated appointment time and I wonder what I should do next.

It’s now been 15 minutes and I grow ever more concerned and not sure what to do. I have a distinct feeling of anxiety, slight panic even, because if they call me upstairs, while I go downstairs and I may need to wait… I am now late to work and am eating into my contingency. Why is this so hard.

Going down(stairs)

It takes four minutes to get seen at reception and I find out that the machine didn’t check me in afterall, so they check me in manually and tell me to wait downstairs!!!

I narrowly avoid going into meltdown right there while explaining to the receptionist why I am upset and hold back my tears.

The receptionist does not understand why this is upsetting me so much and can only see that I didn’t check in, although I did, and it’s no big deal.

If I had waited longer upstairs I could have waited hours!

I now wait downstairs and wonder how long it will take to be seen. It’s urgent. I have real issues. I need help. 

Waiting again

The only thing stopping a full on meltdown is writing this and I feel guilty and self conscious.

Funnily enough, I am sitting in a place designed to help people and I have nobody right now to reach out to and help calm me down. Luckily I have decades of experience to look back to, most skills and coping mechanisms were learned without having the benefit of knowing what ASD is and how it affects me. Knowing why can really help understand yourself better and that 1 in 100 on average have it too, when you think you are the only alien on the planet.

Meanwhile, my mind reminds me that I’m a grown male adult of the species with kids and a career… I should be proud and manage this better. I should keep this way more internalised and controlled. Maybe I really do have a problem? Yes, that’s why you are here! 

It’s not funny of course and I am conscious that I am overtly stimming by rapidly bobbing my right leg. It’s tiring but also distracts me and refocusses

my mind. Concentrating on writing this, what by now is a pretty long post, really helps but for your sake I hope they call me soon.

Relieve

I am seen within 10 minutes and fail to really manage masking my mental state. I sob (a little) and cannot even look in the GP’s general direction – I just stare ahead or down. I am upset and I tell him why and he calmly and patiently runs me through his runbook. I begin to relax a little while still being very much loosing my ‘high functioning’ bit.

It feels … nice. I’m talking to a health professional about getting help. No need to mask symptoms or be polite and employ the skills I developed.

He signs me off work for a week even though he suggests longer but I am worried it’ll seriously jeopardise my job and what I worked hard to achieve over the last six months.

I leave with a prescription for something called Sertraline, an antidepressant which slows the flow of information between Synapses, which you can find out more about on the NHS website

So I inform work of my absence and my girlfriend of my new found situation, wondering what to do next and how to actually relax and let the drug start working… in 4-6 weeks!

Watch the video that accompanies this post

Over to you (if you like)

Have you got an ‘official’ ASD diagnosis? What’s your experience with anxiety and depression, or Sertraline for that matter?

I love to hear your comments and if you want to get in touch anonymously you can by emailing [email protected]

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