5 Ways My Family Made the World a Kinder Place for Me with ASD
I was diagnosed with autism in my late teens, by which time many people thought the diagnosis came too late to be of any real use in terms of supporting me. What went unnoticed is that my family, whether consciously or not, had been making adaptations throughout my life that enabled me to manage a world that, for someone with autism, can feel like a very unforgiving place. No parent is perfect, and this is not a how-to-guide for the “Perfect Autism Parent,” nor a set of ground-breaking techniques, but five simple things you can do to make the world a kinder place for your child with autism.
1. Give me as much information as possible
Each change I experience, however small, is akin to a huge mountain of anxiety. Warning me that the mountain is approaching may help me not to panic when I see it on the horizon, but it’s not going to make the climb any easier. What you can do is make the mountain appear smaller by telling me more about it. What does it look like? Is anyone climbing it with me? How long will it take to get to the other side? What will we have to do differently? Any additional information you can give me brings me one step closer to the summit, so if you have it, share it. Throughout your child’s life, he/she will have to face and conquer their own mountains—for example, starting a new school. At age six, the prospect of changing schools felt like attempting to tackle Mount Everest. My family helped me to prepare for the climb in many ways; I visited my new school, and I spent time with my cousins who already attended the school; one of them showed me her uniform and told me what it would be like in the class I would be joining. I’m not saying day one was easy because of this, but I managed day one, and that was enough.
2. Embrace my obsessions
To you, my obsessions may appear random and arbitrary, but to me they are a source of comfort in a world that at times causes great discomfort. I know you don’t know why I collect bears in hats and duffle coats; to be honest, I don’t know myself. But for one reason or another, they mean everything to me and they are a huge part of me. Not only do they have a soothing effect on me, but they can also be used as a means of communication for those messages that are harder to convey to me. While my sister could express her feelings and gain comfort from support and cuddles from our parents, often the best way for them to show me their empathy was to simply hand me my much-loved bear, let me carry it around everywhere including to bed night after night, long after it was socially acceptable for a child my age. By accepting and embracing my obsessions, you are sending me the message that you accept and embrace me, just the way I am.
3. Let me have my down time
We live in a world where communication is everything. But I live in a world where communication is unpredictable and, quite honestly, exhausting. After a day when I’ve felt lost and overwhelmed in my attempts to navigate my way through the labyrinth that is two-way conversation, I need time just to be quiet and allow my overworked brain to rest. For me, this comes predominantly in two forms: either completely shutting myself off in a dark, silent room, knowing I can stay there undisturbed until I feel ready to come out, or watching a favorite movie for the thousandth time. My family could recite it in their sleep. We watched it so many times we wore out the VHS and had to buy a replacement. We watched it when I was tired, we watched it when I was feeling unwell, we watched it come rain or shine, and it felt like home to me. I knew that no matter how many times I watched it, it would stay the same. It provided that much-needed sense of consistency and familiarity I knew I could count on. It would talk to me for two hours straight and expect not a single word in return. This down time was invaluable to me; it was a chance to rest my brain and recharge my batteries, getting me ready for another day in the maze of communication.
4. Facilitate my routine
For many children with autism, routine is tantamount to what makes a good or a bad day. I am no exception to this. Something out of place or disrupting my morning routine can result in a day that simply cannot retrieve itself from the depths of my distress. In my teenage years, the only way to keep my anxieties at bay was to literally write out my morning routine and avoid deviation from it at all costs. I was so embarrassed of this that I tried to hide it from my parents, and looking back I wish I hadn’t. They still tried hard to understand and familiarize themselves with my routine, but it wasn’t until my mum found my written-out morning schedule that she understood this was a very real and almost ritual process I had to carry out each morning. Such a rigid routine may seem unnecessary and can create a major inconvenience—there’s no getting ready in a hurry—but if you can get to know it and support your child in carrying it out, you can remove a potentially huge source of anguish from everyday life.
5. Learn to love my quirks
Lastly, but certainly not least important, is learning to love me for who I am, quirks and all. Like many individuals with autism, I have certain ways of doing things, ways of talking, ways of thinking, and ways of being that make me who I am. While it might sound obvious and natural to embrace what makes your child unique, I understand that it isn’t always easy. Your child will have many qualities and quirks: some endearing, some frustrating, and some that make you question your parenting skills. This is true for any child, but may be amplified in the case of a child with autism. But know this: if you can learn to love me for my quirks, embrace what makes me different, and work with it, rather than against it, you are the best family I could ask for.
Megan Potts is a teacher and autism researcher living in County Durham, United Kingdom, who was diagnosed with autism spectrum condition in 2011, aged 18. She has since been committed to understanding and improving the lives of those with autism and has co-authored a participatory research article on the experiences of university students with autism, in Education Action Research Journal, which can be read online in full.
This article was featured in Issue 69 – The Gift of Calm This Season