If you’ve done any reading about autism you’ve probably come across the term ‘Restricted Interest’ or ‘Special Interest’. The Diagnostic and Statistical Manual (DSM-V), which is used to diagnose autism defines special interests as ‘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 interests)’. Check out those words.
These words make a Special Interest sound a bit weird and perhaps something it might be best to stamp out and be rid of. I want to take you inside Special Interests and share with you my own experience as an autistic adult, of how important they’ve been in my life and how they are something to foster and celebrate with your autistic child.
I’ve had a range of Special Interests over the years. Some come and go and others I cycle through regularly. My interests have included martial arts, writing, exercise, Buddhism, learning Hindi, jigsaw puzzles, doing a PhD, reading every book by a particular author or on a particular subject, espionage, nutrition, animal rights and a whole bunch more.
In the last six months, I’ve added a new one and it’s proving a big one. Lego. It started with the purchase of a small set for my 3 year old and morphed into a whole other thing. I bought a few more sets. Then added some more. Then began collecting particular ranges of Lego – Lego City, Lego Friends, Ninjago. By this stage, I had a pretty significant amount of blocks, so I bought a storage sack to keep it all in and kept building. I discovered I preferred to build structures over vehicles and I liked building from instructions rather than freestyling.
Which meant I needed more. I wandered the aisles of the shops in my area that sold Lego and learnt the cycle of discounts so that I rarely bought it at full price. I hit the online shops and collected mini-figures and gasped audibly when I learnt of the release dates for new sets that I wanted. I realized I needed a better storage system, so I researched options. I converted a section of my home office into a Lego room and bought a storage unit with pull out bins. I spent a whole weekend determining the most logical way of sorting the bricks and relished the fun of it all. At some point during my work days, I think about what I’ll be building after work and I plan out weekend builds. I bought Lego earrings, went to a Lego Convention and joined Lego Facebook groups.
This is what I like to call a ‘360 degree focus’ and all my Special Interests have this. They go beyond the action of the interest to include all aspects of it. I research it. I connect with others doing it. I plan it. I photograph the final product. Sometimes it even subtly changes how I dress and what music I listen to. It definitely changes what I talk about.
That’s what I DO. How I FEEL about all this is something else entirely. Building with Lego is my release. Just running my hands through the blocks is a pleasure. The combination of the smooth sides and firm right angles of each block feels nice to my hands. The sound of the bricks rolling around and over each other pleases me. Sometimes I forget entirely what piece I’m looking for and just let go and enjoy the feel of the blocks. I reach complete stages of absorption during a build. The edges of my world drop off and my focus narrows in and sharpens. My brain latches on hard to the task, peeling off unnecessary peripheral information and weeding out unneeded memories, plans or feelings. It’s me and the blocks and the joy of the growing structure as it unfolds. It’s meditative. A first build moves fast. I usually have my small son playing beside me, handling the pieces that have spilled out of the packet, yet to be used. He urges me on, hungry to see the final result.
Together, we anticipate what it will look like completed, we marvel when we find a new shaped piece that we don’t yet have in our collection and we ooh and aah over a new colour. A re-build is even better. I can slow down and appreciate the engineering of the thing. I imagine the genius that has gone in to determining which piece will allow for a hinge to work well, or best represent a working gear. A slow build like this feels different. More pleasure. Less excitement. Lego is my refuge. It’s where I turn after emotional turmoil. It’s what I do when I am anxious. It’s how I self regulate and recharge. It’s a safe space where I can celebrate the way my brain works best.
The times that I am between Special Interests are the worst times. The feeling of loss of focus, lack of interest and nothing to look forward to depresses me. I wander around the house confused and irritated. It’s deeply unpleasant. You can’t force a new interest. It just doesn’t work that way. You can try and re-visit an old one and sometimes it will stick and you’ll start the cycle all over again. But other times it just doesn’t work and you have to wait. This is why the feel of an interest waning can be scary. You know what’s coming and you don’t want to feel like that. You can’t cling to the interest though in the hope you’ll squeeze more out of it, because this clinging will take away from the joy of it and it will slip away faster. So you wait for the next one and remind yourself that your whole life, the Special Interests keep coming. You have a little faith and sure enough, the next one, or an old one re-visited comes along and you are hooked.
I don’t agree that Special Interests are ‘restricted’, ‘fixated’ or ‘abnormal’. I don’t feel ‘preoccupied’ by them nor do I feel I do them ‘excessively’. Compared to who? For me, they are energizing, restorative and serve an important function in allowing my brain to do what it does best.
I encourage you to watch closely as your autistic child habitats the territory of Special Interests. Watch how it delights them and how it shelters them. Anticipate the waning and be ready to introduce new potential interests when the old ones are let go. Accept that your child might latch on to your suggestions or they might not grab her. Know that the period in between interests might be hard for him. When a new interest is found, celebrate with your child by learning all you can about it. Through Special Interests, you might find a way in to your child’s internal world. A way to share their enthusiasm and a safe harbor to gently lead them to when the world gets too much.
Based on my experience and that of other autistic adults, Special Interests are an anchor and a joy. Something to be fostered and not feared. It’s Friday here. I’m off to get a new Lego set for the weekend build.