Autism Dx 1: Aftercare 0

So I finally got round to my post autism diagnosis GP appointment. On a tide of euphoria at officially becoming autistic I emailed my GP with a copy of my report, saying I would like to come in and talk about support. My GP wrote back promptly suggesting I make a double appointment and thanking me for the “interesting” report.

Hmm.

The word “interesting” in this context sent a strange uncomfortable signal to my brain. An example of autistic extreme sensitivity perhaps, but having suddenly become “interesting” I also suddenly became ill at ease.

In fact I recoiled.

I didn’t want my diagnosis report to be “interesting” to my doctor, I wanted her to help me. Becoming interesting for being autistic is a genuine fear, but I got it. She didn’t know what to make of my growing array of unusual ailments, which before diagnosis were tendered haltingly at sporadic appointments during which she did frowning and I did squirming. We couldn’t make each other out.

Now that it’s autism (cue gasp/head nod/chin scratch)  we’re suddenly on double appointments and interest, which makes sense. I guess this is what a label does.

But it won’t surprise autistic readers to learn that this set me back several weeks in making the call. We can be easily put off. Sensitivity and history combine often. We’ve been steamrollered with misunderstandings all our lives and will naturally want to avoid volunteering for more.

Time passed, anxiety subsided. My strategy of waiting seemed to have paid off. She’d forgotten how interesting I’d become and needed reminding of why I was there. Result!

Except no. As a tiny jolt of recognition passed through her body and she snapped to, and so prompted by her interest I launched into a brief description of the diagnostic process, and my subsequent progress towards untangling who I am after a lifetime of adapting to the neurotypical world.

It was lovely watching her jaw drop as I likened diagnosis to the euphoria of marriage and childbirth – I do like surprising people with this true fact. I enjoyed less my inability to convey the very real difficulty in becoming more authentically me after all the conditioning I’ve gone through. She misunderstood. Thinking I felt under pressure to conform to some notion or other I may have picked up of being more autistic, she counselled that I must only use what I needed of the autistic label, only that which was helpful to me.

Oh. Okay…

I began to discern that I was talking to a newcomer regarding autism and neurodiversity, a kind and well meaning  professional who at present couldn’t grasp the process I was going through. I was surprised that like so many lay people I know, she – a health professional – couldn’t imagine the emotional complexity of late diagnosis or autism as culture and identity. Only part of our difficulty in understanding one another was due to communication styles, the larger obstacle was that the person in front of me had yet to take a significant perceptual shift from the neuro-normative perspective in which a majority view of human experience is embedded.

Hmm.

I tried again – temporarily circumventing the long game we will have to play together if we’re to make progress in this relationship – and briefly explained that I wasn’t trying to be anything other than myself (adding that we’re all different), and swiftly pressed on to more practical matters.

Sleep. Overload. Self-regulation. Anxiety.

To my astonishment she prescribed a mindfulness app, which I duly downloaded but later rapidly deleted from my phone. I would need to subscribe to this and follow a programme of mindfulness exercises through which I would be taught mindfulness (!)

I made it to about 7 seconds of the download video before deleting. Then I hugged the inner child who had to pretend to nap on the rubber mats at nursery school because her racing mind just would not slumber. I was three but I still remember it most vividly. Post diagnosis it now marks my earliest sense of being different and wrong. The point is that I can’t follow your systems, I can’t aspire to your mindfulness template, I will fail, I will be wrong.

For those who are curious, a task such as learning mindfulness techniques (I’ve tried) goes against my wiring (think herding cats), and would also represent an additional cognitive load in my day – something new to remember and stick with. The app ironically contains too much information (and of a sequential nature) to process and is presented in an overstimulating way. This may work for some autistic people – but not for me.

With my newfound autistic self-confidence I pressed her for emergency sleeping pills. These I have been consistently refused in the past on the grounds of their addictiveness and side-effects. I get that, but sleeplessness is an extremely serious long term health risk not to mention the destructive effects on daytime functionality. This time she agreed.

On collecting my prescription I felt nothing but relief. If I’m entirely deregulated I might be able to get a night of respite and hopefully re-jig my body clock. It was not until opening the package that I discovered the pills contain lactose, something my GP should know I’m intolerant to.

Note to self – write to GP asking for lactose intolerance to be flagged up on my records each time she prescribes a new medicine for me. Perhaps there’s an app she can use?

My GP seemed to know nothing about local organisations from which I could derive support. Luckily I’m better informed and I know where to turn if needs be, and I’ll be writing to her with details so that the next newly diagnosed autistic patient benefits.

We have a long way to go together, and I can’t help reflecting that along with all our other challenges we must also educate the professionals whose care we fall under. This is the lot of the “lost generation” of late diagnosed autistic adults.