Like many autistic people, I knew I was ‘different’ from a young age – and I knew that different was not a good thing – so I constantly tried to be more like people wanted me to be…
In an unpublished (unpublishable?) novel from 2020 I wrote some chapters from the point of view of a female doctor who happened to be autistic. I’d done some superficial reading on the autism spectrum, so I included clunky details like an obsession with graphs and statistics and an aversion to hugs. I had her deal awkwardly with her patients, preferring to stare at her screen while they talked instead of meeting their eyes; I made her the unwitting villain of the piece because of her lack of empathy. I realise now that a lot of the information I accessed was based on the more familiar male ‘Aspy’ tropes of train-spotting and jotting down number plates and Big Bang Theory stereotypes.
More and more books are now being published that deal explicitly with the female presentation of autism, which can be very different to that of males. Females on the spectrum can be highly skilled at masking their differences; they can be more socially adept; their ‘obsessions’ (My Little Pony, pop stars, clothes, crafts) can be socially acceptable). They can be creative, articulate and actually even BAD AT MATHS. No wonder so many young girls have missed diagnoses.
Sandra Thom-Jones was a respected professional with a family, a career, friends and a nagging sense that something is not quite right in her life. And with two sons diagnosed with autism, she comes to a realisation that the struggles and difficulties could have an explanation. The sense of overwhelm and exhaustion, of ‘not fitting in’, of failing to meet the life challenges that other folks sail through… Could she be autistic too?
Growing Into Autism is her account of her experience of late diagnosed autism, with some useful but more general information tacked on. Thom-Jones structures her account around the DSM-5 (Diagnosis and Statistical Manual of Mental Disorders, 5th Edition) criteria, such as ‘restricted, repetitive behaviour patterns’ and ‘deficits in social communication and interaction’. She explains that she uses these categories ‘not to medicalise autism (or myself) but rather to give an understanding of what those very formal scientific phrases mean in the lived experience of an autistic person’.
So, for example, under ‘restricted, repetitive patterns’ she talks about her extreme and painful sensory hypersensitivity and how it leads to a self-protective shield of habits and routines, to perfectionism, overwhelm and burnout. She talks too about her ‘stimming’ – self-stimulatory behaviours. I remember the intellectually disabled people I worked with in the mid 1970’s; I didn’t realise that the head-banging, hand-flapping, rocking and spinning were all coping strategies to help deal with negative emotions like anxiety or frustration. After her diagnosis, Thom-Jones embraced a whole repertoire of activities she can call on to self-soothe. Some of them are socially acceptable, like fidgeting or knitting, but when she’s at home, she can sing, dance, twirl, repeat random phrases and play with soft toys or her collection of dolls or other comfort objects. The more she lets herself behave naturally as her autistic self, the happier she is.
The over-arching theme of this book is the relief that her diagnosis provided. Thom-Jones is released to evolve as a someone with a different brain, successful in her own terms instead of being a failed, faulty neurotypical. (Though I do actually wonder if there is any such thing as a typical person! Every one of us seems to have some challenge or other…)
Just a note: the horrible (in my eyes) cover is explained by her love of the colour pink. In an author pic I saw, she has pink hair and pink clothes.
And a further note: how I would love to have access to Thom-Jones’s stash. Knitting, she says, has been a life-saver and she has collected hundreds of balls of wool, more than she can ever knit with in her lifetime. Just because she loves loves loves yarn. Divine. Sigh.