How to Find Your Place as a Late-diagnosed Autistic Adult

By Kate Laine-Toner

I was 42 when the autism penny dropped for me. I’d lived around half of my life and it had been a very difficult existence. Up to this time life had been a bewildering rollercoaster of stressful jobs, unsuccessful relationships and seemingly random experiences. I was at a place in my life where I couldn’t find my purpose and life felt very confusing. I didn’t see the point of my existence.

My daughter was diagnosed as autistic in 2012, and as happens with many parents, I began to see autistic traits in myself. I had an unsuccessful assessment in 2013 and after a lot of soul searching (and internet searching) I realized that self-identification was perfectly acceptable and so that’s what I did.

Identifying as an autistic person was like suddenly putting on glasses with the right prescription after stumbling around in a blur for all of my life previously. This was not immediately comfortable, and it took me some time to get used to this new way of seeing things.

I realized that I didn’t know myself. I didn’t know who I was or what I liked to do. I didn’t even know what clothes I liked to wear or what food I liked to eat. I set out on a journey of discovery of all these things and more.

Before identifying as autistic, I masked my way into and out of friendships, jobs and romantic relationships. Because my own personality was not a fixed thing, I simply became who friends, employers and lovers needed me to be. This would work well until I became so uncomfortable in each situation that I had to leave. I liken this to holding a yoga pose: it feels good at first but you can’t do it forever.

Looking back, I can see that at some point I unconsciously drew a line under this kind of behavior. I don’t remember actively thinking ‘from now on, I’m just going to be myself,’ but that’s what I did. And an amazing thing happened: people liked me. People liked ME for me, not for what I could do or be for them. They just liked me, the authentic Kate.

When a person first realizes that they are autistic, it can bring up a huge range of emotions. Many people feel relief at finally understanding why they are the way they are. Some feel sadness for things they did when they didn’t know what they were doing. It’s also common to feel anger at family members for not helping them with their difficulties that seem obvious when we look back at them. This heavy emotion phase may last for some time, but it will ease.

The most important thing to do during this phase is to be kind to yourself. Cut yourself and others some slack. You didn’t know what you didn’t know (and your parents didn’t know what they didn’t know, either). It’s important to be here now: be in today and don’t obsess about things that happened in the past or what might happen tomorrow.

I suggest that as soon as possible, seek out other autistic adults. There may be an autistic social group in your area (have a look on Meetup.com and search the internet for ‘autism social [your area]’). There are also many autistic adult groups on Facebook that can be a good place to start.

Once you start meeting people, your life will change for the better. Human beings have a fierce need for belonging. We need to belong more than we need to feel good about ourselves or do well at work. As late-diagnosed adults, most of us spent all of our pre-diagnosis lives bouncing from one friendship to the next and never feeling a deep connection with anyone. This will change once you begin to connect with others.

Spending time with other autistic (or otherwise neurodivergent) adults is a balm for the soul. You can just be you! You will find others with your interests and perspectives. You will find connection and acceptance – possibly for the first time in your life. The benefits to your mental health will be tangible.

Around the time I began to self-identify as autistic, I set up a charity to support parents of autistic children, which I ran for ten years. Through this work, I was extremely blessed to meet hundreds of other late-diagnosed autistic adults. Most of these are still friends a decade on. When I first began to meet autistic adults, the bliss of these connections was like water in the desert.

It can be daunting to think about going for an autism assessment. How will your life change? What will people think? How might this impact my job? In my experience, the benefits of self-discovery through having a diagnosis (either formal or through self-identification) far outweigh the negatives of not learning the truth about yourself.

If you feel you are autistic, you probably are. Do some research. Read some books (Drama Queen by Sara Gibbs is great, as is Pete Wharmby’s What I Want To Talk About). Speak to your GP about a referral to your local assessment team. You may need to go through some emotional muck during this time but you will come out the other side with clarity and a wonderful new tribe and a place where you finally fit in.

Author’s Note: Kate Laine-Toner is an award-winning autism parent support specialist. In 2012, she founded the charity Bristol Autism Support and ran this until 2022. She was given a British Citizen Award for her services to the autism family community. Kate is autistic and has an autistic teenage daughter. Her book, Where Do I Start? How to manage the emotional journey of autism parenting will be published by Jessica Kingsley Publishing in September 2023. Kate can be reached at klt@kayeltee.com.