While my daughter was going through the autism diagnostic process, I was saddened to read the type of language that is used by professionals to describe behaviours that might lead to a formal diagnosis. Words like deficit, deficient, abnormality, failure, fixated, excessive and odd are used in the DSM-5 (the diagnostic manual used by many professionals to diagnose autism). When it comes to the interests and hobbies which bring us joy, peace or excitement, the DSM-5 has this as a criterion: ‘Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).’
Aside from my brain shouting, ‘How dare they?!’ about this incredibly negative view of autism which persists, I feel it’s really important to give another perspective – how these things feel from the inside. (Another question which crosses my mind is who is it that gets to decide how abnormal an interest is – it seems like a highly subjective viewpoint to me).
As pointed out in this fantastic article by Chris Bonnello on Autistic not Weird, there are many interests or hobbies which are not unique to autistic people. But somehow when it is an autistic person enjoying it, it is declared an obsession or a fixation, whereas a neurotypical person enjoying the same thing might be described as having an interest or a hobby. This pathologising language does us no favours.
I cannot write about how an interest or hobby brings happiness to a neurotypical person because obviously I have never been neurotypical. I know that many neurotypical people use the things that they enjoy to point them towards a career, or as a form of self-expression. Springing to mind are artists, playwrights, writers, teachers, architects, and many more. It also can’t be denied that enjoying hobbies or interests is common to people the world over, whatever their neurology.
For we autistics, the actual type of interests or hobbies can be incredibly wide-ranging. Looking at my daughter, there was a programme she used to enjoy as a three year old called Bitz & Bob, about a girl who was an engineer. It resulted in such excitement in my daughter that the theme tune would prompt her to dance and sing along every time it was on. We had to record as many episodes as possible on our set top box so that she could watch them again and again (and dance and sing again and again too!) Then there has been her interest in space and the solar system, which has been of great interest over the last four years, and has resulted in her voraciously reading book after book and telling us all kinds of interesting facts that we might never have learned otherwise.
We have never tried to stop her talking about her interests and finding out more about them in any way for a number of reasons. When she was little, it was helping her to develop her spoken language skills. Then when she was older it helped to improve her amazing reading skills. In fact, one of the first books she read independently at age 4 was The Usborne Beginner’s Guide to the Solar System. I have tried to nurture and encourage her interests and to understand where they have come from and take an interest, even if they are in things that I am less interested in myself.
For my own part, there have been many different things over the years that have brought intense joy, peace, excitement and fulfilment in ways which have benefitted me enormously. Sometimes, they have been things that others enjoy as well, such as playing in orchestras or singing in choirs, and sometimes I have baffled others with the extent of my excitement at discovering something new. An example that springs to mind is when I was studying for my undergraduate (BA) degree in Medieval Studies. I was working on an assessed essay for a module on Art History and late medieval literature, and had chosen the depiction of St Margaret of Antioch in literature and stained glass. I was looking through a library book and found that my local parish church had a depiction of her in one of the oldest windows in the church. I was so excited that I literally bounced down the stairs to share the news with my housemate. She was utterly baffled (and somewhat amused by my bouncing!) – I am guessing that the accountancy degree she was studying for had not brought such moments of joyful excitement!
My interests and hobbies bring me a variety of benefits. My wide-ranging music tastes give me a tune for all occasions and all moods. My memory has latched onto the many styles and music artists that I discovered during my teens and has given me the ability to identify a vast number of songs from their first few notes alone. This means that if I am in the mood for a particular song, or something comes up on Spotify that I haven’t heard for ages, I get a rush of euphoria when I am able to recognise it playing from the very first few notes. It also means that I am definitely good to have on a quiz team (as some friends of mine discovered several years back. Our team wiped the floor with the opposition during the music round of the Toddler Group parents’ annual quiz, thanks to my eighties music recognition!) I have also become very good at retaining music trivia, which I love to share with my husband and anyone else who I think will listen.
My interest in Medieval History has given me a real sense of admiration for the people of the past and how they coped with the difficulties of life without electricity, running water and other mod cons. I have been fascinated by the art, the literature and the difference in ways of life. I have also found it comforting when reading about the kind of attitudes that people had and realised that human nature has not changed in all of that time. I find learning about the past is deeply satisfying in giving me a sense of where we have come from, particularly in learning about the medieval Church and how it relates to my faith today.
Sometimes our interests can feel all-consuming to us. Not that we necessarily wish to shut out the world, but the interests take up all available space in our brains. Often when I discover a new hobby or interest, I find that it is all I want to do for quite some time. An example of this is my sewing machine, which I bought last autumn along with a number of Fat Quarters (fabric squares). I have made a number of things with my sewing machine, and each time I have had it out on the kitchen table, with a pot of tea nearby and Classic FM playing on the radio, I have become so absorbed in what I’m doing that I have lost track completely of time. Often it feels like time has stood still, but when I look at the clock I realise that several hours have passed and I have forgotten to eat, drink or go to the toilet. Psychologists describe this as a Flow State. Sometimes when I have been planning a big project like the duvet cover I made for my daughter’s Christmas present, I find myself still planning it out in my head when I go to bed, or in the shower, or any other time when I might be expected to be thinking about other things. But whilst doing the sewing, I get a real sense of peace and achievement through immersing myself so completely.
Watching the same favourite shows over and over can bring joy, peace, excitement, and many other emotions. I find that if I am bored, stressed, feeling low, or wanting to have something on in the background whilst I do other things, a favourite episode of something can make all the difference. In my case, I have watched my preferred episodes of Doctor Who so many times that I can now pick out an episode at random depending on what I feel in the mood for. I also enjoy the repetition of favourite lines or jokes from the show and drew great comfort from a familiar episode or two when I lost my uncle last year. In a time where everything has been so unpredictable over the last couple of years with the pandemic, there has been great comfort in the predictability of re-watching things that I love.
Other interests and hobbies of mine come and go. From time to time I enjoy doing crochet – it keeps my hands busy and creates lovely things. I also enjoy doing jigsaws in the evenings. Jigsaws have been particularly good for my mental health as they use both sides of your brain and activate the part that deals with logic (to fit the pieces together), and the part that deals with art and colour (to fit the pattern together). If I am having an anxiety episode, this is one of the most effective ways of restoring the balance and bringing peace to my racing and overactive brain.
Although I understand that not everyone experiences the intensity of emotions that my interests bring me, I still want to tell my family and friends all about them because I want to share with them what it is that makes me feel so much. I hope that they gain enjoyment or excitement through what I share. I know that they have different interests, and we have to be kind to one another and listen to each other’s passions even if we do not share them. It can be difficult if we are hearing about the same thing again and again and are unable to fathom the reason behind an interest, or to share the level of excitement. But remembering that that person’s passion is literally overflowing from them and that they want to share it with you might help to reframe it from ‘autistic obsession’ to ‘interest which brings them joy and fulfilment’.
Laura Webb is a director of NeonDaisy