On the value of an autism diagnosis

Dear Friends,

As it’s World Autism Awareness Day [originally posted to my Facebook wall on 2 Apr 2017] I’d like to mention my own diagnosis of autism back in 2011.

I was fortunate to spot the signs earlier than many women my age (then, mid-thirties) might have done, back at that time when women’s autism was so under-researched, yet getting diagnosed was not a simple process. So, I’d like to explain why I sought diagnosis and how doing so has assisted me to live differently, with greater authenticity, self-compassion and internal peace. Awareness and skill around autism has sky-rocketed in the last few years (thanks to Temple Grandin, Luke Jackson, Naoki Higashida, Steve Silberman, Liane Holliday Willey & many others), but there is still a way to go – and for that reason, I decided I’d add my thoughts and experiences, here today.

The possible source of my ‘convoluted’ experience of life had begun to dawn on me in 2009, shortly after the loss of my (our) beloved Mum, in the time of deep introspection and raw openness that intense grief provokes. I had been reading deeply about psychology, and discovered there this a saying in the autism world: ‘Take a person with autism and two generations earlier, you’ll find an engineer.’ My late grandfather was a brilliant engineer.

‘Well,’ I thought, ‘that saying doesn’t apply to me, for sure!’

Cue: tumbleweed and then the cacophonous sound of 100 jigsaw pieces slotting into place and high-fiving eachother.

I want you to know what the diagnosis process looked like for an adult woman in ‘those days’. The first GP I saw (in 2009) to ask for a referral for an autism assessment proclaimed in utter disbelief, and I quote, “Why would a nice lady like you want a label like that?!” We were of a similar age and ‘background’, and I could see the dark horror in her eyes at the possibility of ‘people like us’ being associated with autism. She flatly refused to refer me, and confessed she didn’t know who she would refer me to (yes, let that one sink in), prescribed me (yet more) anti-depressants and sent me off.

In 2010, now more sure than ever of my underlying neurology, I approached another GP. She looked mortified and uncomfortable (as, probably, did I) to be having this conversation, and said she really didn’t know how on earth I could think I was autistic. She asked me to email her a list of my reasons for my conclusion, for her to consider before she referred me (if she could find out who to refer me to – yes, again…). I wrote the extensive list, which was an emotional and unravelling experience, and emailed it… Despite my anxious follow-up phone calls to the surgery, I simply never heard back from the GP.

In 2011, I finally went privately to one of the great advocates for autism in this country (Dr Carol Stott). Ismael came with me, and over a 3+ hour period we rattled through all the quirks, the troubles, the talents, the intensities that make me up. Carol was curious, excited and non-judgmental about every aspect of my psychological make-up. At the end of the diagnostic assessment, she looked me warmly in the eyes and said, “Well, I have some good news. You meet all the criteria for autism [specifically Asperger’s syndrome]. Congratulations!” Wow, what an affirming, life-enhancing perspective – and one which would carry me through some of the harder periods of reassessing my self-understanding in the years to come.

Here’s the thing: to my mind, some years down the line, autism represents a delicacy of knowing and sensing, a delicacy which is easily dismissed, repressed or trampled upon, by our own selves and even at times by the most loving souls within our circles. Diagnosis helps us carve out space to reclaim and own that delicacy, and give it safe haven, so that it might bloom into its full, awesome beauty. Autism looks different in women, because our brains are sometimes geared more towards social integration – but what that means is that we might ‘mask’ our autistic traits to get by and fit in, and ‘pay later’ with severe exhaustion and the need for solitude. Knowing how we are wired helps us understand why our life experience differs from those others who seem to cruise on by, barely missing a skip or a beat or a jazzhand of their tap-dance routine, from birth to old age.

Without diagnosis, how could I have reckoned with the complex PTSD, the chronic fatigue, the depression/anxiety, the PMDD, the recurrent burn-out, the brain fog, the severe post-natal depression, the misjudgements, confusion, embarrassment, shame, miscommunications and conundrums that had accrued in my life? Hm? What was going on? Was I broken, wrong, hapless, fickle, careless, pitiful, grandiose, egocentric, unintelligent…? Would medication fix it? Would psychotherapy get to the heart of what was going on, like it seemed to do with other people in ‘life distress’? Experience taught me that the answer was ‘no’.

With the benefit of the self-knowledge granted by diagnosis, I have been able to heal trauma, repair core wounds and slowly, consciously, like a patient undergoing surgery without anaesthetic, train myself in the glorious arts of self-care. Managing my extraordinary neuropsychology is a part-time job in itself, comprising a regime (yes, I decided to make self-care my ‘special interest’, so it got pretty intense) of daily/weekly/ongoing:

walking (10k steps per day);
exposure to nature;
mindfulness-based cognitive therapy (the 8 week MBCT course was a game-changer for me);
a largely organic, gluten-free, plant-based diet (the gut-brain connection is real);
nutritional supplements;
alcohol-free hydration;
qigong (amazing);
gentle yoga;
coached swimming (thank you, June) and some wild swimming;
a wonderful community gospel choir;
TRE (trauma release – see TRE UK – extraordinarily good);
sleep in huge quantities;
prayerful meditation and spiritual practice;
tackling every last substance addiction (including anti-depressants – which was gruelling);
solitude and company in controlled quantities;
working freelance, using a co-working office space to be connected to lovely people;
boundary-setting;
therapeutic journaling (I am now at >140 journals…);
shifting from ‘service to self’ thinking to ‘service to other’ activity (mm, this one is nice);
learning to receive the support, wisdom and guidance of those who know and love me (oh, wow – thank you for this one).

And so now, with these basics of self-management falling into order, I have access to a renewed dignity, a refreshed uprightness, and I am beginning to be able to enjoy the multidimensional benefits of autism: the intensely-lived moments; the gifts of deep empathy; the 360 degree awareness; the access to the blissful Now; conversation with an unleashed noisy, clamouring intuitive inner voice (it speaks truth!); the pattern-spotting; the Cassandra-like moments of foresight; the wonders of the song listened to over 300 times (‘Heal the World’ just gets better and better, I assure you!); the expansion into heavenonearth; the thunder-bolts of over-flowing LOVE for people, animals, nature, ideas, concepts, words, silences.

Our lives are works in progress, and a diagnosis of autism can be a vital piece of information for living our lives more richly, authentically and self-compassionately than ever before. Typically, a person who feels relieved at the idea of being diagnosed as autistic is a person likely to be on the spectrum – but not everyone wants or needs a formal diagnosis. I reckon that self-certification is just fine too. An autism-friendly world is in fact just a friendlier world, so the more of us there are who get behind the sparkling beauty of the intense, knowing, sensitive autistic experience, the sooner we will all soften out some of the rougher edges of the intense world we live in today.

I liked this clip – the lovely speaker conveys my flavour of autism more closely than others I have seen.

Happy World Autism Awareness Day to my fellow autistic folk, to those on the road to diagnosis or not, to their loved ones, and to us all in our marvellous neurodiversity, each one of us blessed with our own incredible, unique, staggeringly-clever brains. Aren’t we all awesome?

Lots of love,
Arabella

#worldautismawarenessday

More info: National Autistic Society

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