Late Identification of Autism

by Zoe Williams

Finding out you are Autistic as an adult can be like peeling layers off an onion or a blurry image slowly coming into focus. Sometimes there may be an initial 'aha' moment, but this is followed by many questions, a great deal of self-reflection, and re processing of past experiences. And the older you are when you have this revelation, the more there is to unpack and work through.

This realisation can be a double-edged sword - there are benefits from having this new information about yourself but at the same time, there are many challenges to navigate. Discovering you are Autistic is just the beginning of the journey, not the end.

Some of our members contributed their thoughts on this topic via an informal survey and their comments are the basis of this blog post. We would like to express our gratitude to everyone who took the time to share their views.

“It has made sense of why life has been so challenging for me.”

Knowing, at last, the reason why you have always felt different, or like you didn’t quite fit in, brings a huge feeling of relief. It is also very validating to know there is a reason why you have struggled in life more than others - that you’re not a failure after all. This can help you begin to let go of negative labels and feelings of shame, and learn to accept and be kinder to yourself.

“Life would have been easier if I had known earlier”

At the same time, there can be huge feelings of regret that it has taken so long to find out this crucial knowledge about yourself. You may feel a sense of loss for how things could have been different if you had known earlier. Some people have experienced impacts on their physical health due to the constant stress of not knowing they were Autistic. Many late-identified Autistic people also carry a lot of trauma from all the negative experiences that have happened to them as a result of not knowing they were Autistic. However, bearing in mind the context in which we grew up, we can also appreciate that being diagnosed as Autistic in our own childhood may not have led to more support or better outcomes.

“I understand myself and my challenges better.”

Realising you are Autistic gives you a better understanding of your strengths and weaknesses. It allows you to start fighting back against internal criticism and gives you a new vocabulary to describe your experiences so that you can start communicating your needs to others and ask for accommodations when you need them. In addition, by making sense of the challenges you have experienced in the past, you can create a new narrative for yourself.

“It's been really important in finding out about my identity.”

Understanding why you don’t naturally conform to society’s norms leads to developing a more authentic sense of your Autistic identity. You can finally get to know the real you - which has likely been hidden behind a socially acceptable ‘mask’ for decades. Although the unmasking process doesn’t happen overnight, in the long run, this will improve self-esteem and self-confidence.

“To know what is masking and what is me.”

Although unmasking is generally viewed as a positive outcome, you may initially experience a form of identity crisis. If you have been masking all your life, how do you know which aspects of your personality are real and which are fake? This throws up a lot of existential questions. Realising how much of your true self you have been suppressing - for the benefit of others, and at your own expense - is distressing.

“I can find solace and clarity in community.”

Peer support from other Autistic people is so valuable, whether online or in person. Knowing that there are others who are like you, who have experienced similar challenges, helps reduce feelings of isolation and helps you make peace with yourself. We can also learn from each other and share practical tips for day-to-day issues such as dealing with sensory over- and under stimulation, managing executive function difficulties, and navigating the neurotypical world without losing yourself - as well as the uniquely Autistic joys of deep interests, hyperfocus and stimming.

“The formal assessment felt so negative”

Our survey threw up many issues with the adult diagnostic process. Some members were unable to access an NHS assessment in their local area. Other people were left in limbo due to long waiting times. Private assessment is expensive and not affordable for many people. Without a formal diagnosis, it can be difficult to ask for accommodations in the workplace and people may be less willing to accept that you are Autistic if you aren’t officially diagnosed. Those who did have a formal diagnosis felt that the assessment process was upsetting and based on negative stereotypes. In addition, there is no post-diagnosis support offered to help people come to terms with everything.

“It has helped my family to understand me and we are a much stronger unit because of that.”

Sharing the new-found knowledge that you are Autistic can help to develop stronger relationships as friends and family members get to know you better and accept you for who you really are. As there is a strong genetic link, this can be reciprocal, as we suddenly see our relatives through a new lens. It’s not uncommon to discover that your friends or romantic partners are also Autistic or differently Neurodivergent as we are often attracted to like-minded people.

“Some people dropping off contact being uncomfortable with my unmasked self”

Unfortunately, we may also experience the opposite effect in our relationships. Due to stigma and negative stereotypes some people may break off relationships after finding out that you are Autistic. A lack of understanding of Autism can also mean that some people may not accept that you are Autistic. This can be a difficult lesson for us to learn in setting boundaries and not letting other people’s negativity deter us. Our self-identified Autistic members reported greater difficulties with this problem and that it was sometimes hard to get acceptance from others without a formal diagnosis.

“It has given [my life] new meaning and new hope”

There are benefits and challenges to finding out you are Autistic in adulthood. It can take a long time to process, and having the knowledge you are Autistic doesn’t change anything by itself. You need time and space to really understand your authentic self and make practical changes to accommodate your needs, and this can be difficult to get when you already have other responsibilities to juggle.

Talking to others about it can also feel risky because of the fear of negative comments and stigma. Some relationships in your life may fall by the wayside, but others may become stronger. You may also make new friendships and find a sense of community by seeking out connections with other Autistic people.

Overall, discovering you are Autistic can be like starting a new chapter in your life, one which could eventually allow you to make peace with yourself, create a new sense of identity, and live your life in a way that is more in tune with your own needs.

Zoe is a late identified autistic parent to 2 unschooling neurodivergent children, writing about autistic identity and culture. Find her on Medium https://medium.com/@zoewilliams_2443 and Mastodon https://cupoftea.social/@rekindled.