Skip to main content
Sanskrit anahata in heart

Devaki Sokaris

Discovering autism

Late autistic diagnosis

There is a lot of talk around autistic levels and functioning labels, and it seems we are stuck with these labels for now. These terms undermine our real needs, box us and then we are forgotten.

We mask because of society’s unacceptance of our differences so it’s a vicious circle but I can’t help wondering how much we may have contributed to these labels by our own behaviour. If we had not masked our autistic traits so much, would we have even got a label of high functioning? I don't know.

I don’t believe we should even have functioning labels or levels because our needs are not set in stone, thus they vary given how we are dealing and reacting to our environment, sensory and social challenges. If we want people to recognise, we have real needs we must also stop pretending we are not struggling. Many are so used to masking they do it at home, so their partners, spouses, friends, and house mates don’t even know the extent of their traits.

When people are diagnosed, they often drop a lot of masking at home and in public, and then people think they are putting it on because they have never seen this behaviour before. For us it is liberating and for those close to us it is a shock and can often be dismissed as not real.

My husband had to witness a lot more of my autistic traits than he had seen in 23 years. Some of them were more apparent to him than other people but I had hidden stimming and many of the things I was struggling with and experiencing from him. Once I knew I was autistic it was like the top burst of the bottle and all the traits that I had supressed came to the front line.

I didn’t discover I was autistic until 2021 at 63 years old so you can imagine a lifetime of masking takes time to unmask. Its never going to be 100% because let’s face it not eve even non autistic people reveal themselves that fully and mask who they are. Many of us in our senior years live life more on our own terms, and in general don’t give a continental what other people think of us. For the most part I have also taken my autistic traits in stride with that thinking as at well now.

People diagnosed in their 60s and older have spent three quarters of their lives without understanding why they are like they are, along with decades of wrong diagnosis’s, no accommodations, and suicidal thoughts all without knowing why they feel this way. They have already finished their education, brought up families and have endured a long working life without any acceptance or understanding.

Many like myself have chosen not to have friends and lead a reclusive lifestyle so to manage our high anxiety and sensory issues. We are trying to find our identity in decades of masking, not knowing why we are this way and societies dismissiveness, gaslighting and non-acceptance.

Formal diagnosis

A lot of well-meant advice or good intentions can have bad outcomes or be harmful when it doesn’t come from wisdom.

I was told by an autistic psychotherapist that I didn't need a diagnosis because I was retired. This is dismissive of someone’s needs, and fails to see that a diagnosis gives a person much more than work accommodations. Please do not tell people they don’t need an autistic diagnosis thinking this will make them feel validated or better about themselves. The need for a formal diagnosis is personal and only the person themselves knows whether they need it and why.

Self-diagnosis is very valid and fortunately widely accepted by the autistic community. Many will not have the means or ability to get a formal diagnosis, and some will feel its not important to seek one. It was important to me and my mental health to get my autism formally validated. Prior to my official diagnosis I did a year of research, and online testing along with reflecting and analysing my life, childhood and what my parents told me about my behaviour.

I was diagnosed with ASD level 2, GAD and social anxiety on the 3rd of November 2022 at 64 years old. I waited two months for an assessment, I was well prepared and it went smoothly. Having it validated I am autistic helped to lift a lifetime of shame and guilt for thinking something was wrong with me. I am now unmasking decades of masking my autistic traits. Unmasking has been liberating in many ways. Although my autism has drawn more attention to me when I am rarely out and about, I don’t care what strangers think of me anymore.

I have been a hermit for some years now and choose to live a reclusive life with my husband. As I have gotten older my ability to deal with sensory and social issues has become much more difficult to manage. It is far better to reduce sensory overload and minimize the meltdowns I get than partake in the noise of the outer world. It hasn't been difficult because I'm am quite introverted and have always liked to spend most of my time on my own.

External sites open in a new tab or window. Visit them at your own risk.
This site doesn't store cookies or other files on your device, but external sites might.
Help   Powered by: Smallsite Design©Patanjali Sokaris