Musician and teacher Julie Hanify has played the piano since she was a child, but for most of her life she felt like she was “playing blindfold”. In her memoir Small Blue Thing: Life on the Spectrum, Julie writes:
I had the sense that each note was in its own world and that the next note was a total surprise, as if it were on the following page. Reading music was like leaping note to note over an abyss. I lived my life like this. I’d be in the moment with no forward thought or planning for the next.”
When she was 43, Hanify was diagnosed with attention deficit hyperactivity disorder (ADHD). The prescribed medication improved her brain’s capacity to filter and sort multiple stimuli. Now, for the first time ever, she could sight-read music. More generally, she was able to sense the present moment as having been shaped by the past and as contributing to the future. With a sense of sequence as a frame for life’s experiences, Hanify could grasp previously elusive concepts like anticipation, planning, and cause and effect. “Medication”, she writes, “changed my life”.
Six years later, when Hanify was 49, she was also diagnosed with autism. The addition of this second diagnosis deepened her insight and self-knowledge, helping her to understand a lifelong sense of disconnection from people in the ‘neurotypical’ world. As Hanify’s account of living with these conditions makes clear, the feeling of disconnection, of not being understood or being able to make oneself understood by others, can be a source of deep pain, anxiety, fear and confusion.
Hanify describes the two diagnoses as wrapped tightly around one another, impossible to separate:
ADHD may be more responsible for impulsive or distracted behaviour, and ASD may be more responsible for uncontrollable feelings of fear, but each has obsessional qualities, and in each there are glimpses of the other.”
She’s clear, too, that these conditions do not form her character or personality.
I like to acknowledge that I have autism and ADHD associated with everything else that is me, but they are only part of who I am – they don’t define me. The disorders affect especially how I react to being confronted with a world that is constructed around neurotypical – non-autistic or non-ADHD – people.”
Describing the past management of children with ADHD, Hanify writes:
These children were called irrepressible, naughty, busy, ‘little blighters’, uncontrollable, rude, evil and bad. They spent much of their schooling in altercations with other students and teachers and with principals, and much of their learning time withdrawn from classrooms because they were disruptive.”
Nowadays it is recognised that most children with ADHD also have other, co-existing conditions:
This may be autism, dyslexia, Tourette’s syndrome, or dyspraxia. There may even be more than two conditions in the one child.”
Yet despite better understanding of the nuanced and complex neurological picture, stereotypes about these conditions persist. One of the most enduring stereotypes about autism, for example, is that the autistic person is unable to empathise with others. But Julie Hanify is so sensitive to other people’s pain that a great many mainstream films and TV programmes are, for her, unwatchable.
In fact, a common characteristic of both autism and ADHD is an active imagination with a heightened sensitivity to what others may be feeling and a highly evolved inner world. A child may experience paracosms, maintaining a detailed imaginary world and having close imaginary friends, or believing herself to be an animal. The difficulty such a child can have in distinguishing inner and outer experience probably contributes to the sense of overwhelm and panic that often ensues when the child enters the classroom. Certainly, as Hanify explains, those with autism and ADHD experience chronic and disabling anxiety, and extreme discomfort in social situations, often with an exaggerated freeze, flail or flee response.
Hanify writes from a unique vantage point, having both personal and professional understanding of the gifts and difficulties of life ‘on the spectrum’. She emphasises the importance of recognising these conditions early, and of providing good medical and educational support. Her book contains excellent practical, detailed advice on how to offer such support. Above all, however, she advocates for compassionate and attentive care, in the home, in the clinic and in the classroom. Support begins, she insists, with understanding. Its aims should never be to medicate ‘non-typical’ children into zombie-like compliance or to discipline them into exclusion from society, but to guide them towards a resilient, comfortable and confident bearing in the world.
A Small Blue Thing is a powerful and valuable book. Hanify reminds us that a more welcoming approach to ‘difference’ benefits everyone – we’re all on this spectrum together. And while we’re at it, perhaps we could extend our default settings about what’s ‘normal’. A world geared for people who aren’t comfortable watching cruelty in movies, for example – that sounds like a good normal to me.
Sue Wootton is co-editor of Corpus.