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 autistic people didn't mask their autistic traits so much, would they have even got a label of high functioning? I don't know its hard to say given the stigma autistic people face everyday.
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 the autistic person it is liberating, and for those close to them is a shock and can often be dismissed as not real.
My spouse had to witness a lot more of my autistic traits than they had seen our whole life together. Some of them were more apparent to them than other people but I had hidden stimming, and many of the things I was struggling with and experiencing. 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 even non autistic people reveal themselves that fully and mask somewhat 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 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 their children, and have endured a long working life without acceptance or understanding.
Many like myself have later 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, along with societies dismissiveness and non-acceptance of our autistic selves.
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 a psychologist 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.
As I have gotten older my ability to deal with sensory and social issues has become much more difficult to manage. As a result, I have lived a mostly reclusive life with my spouse for several years now. It is far better to reduce sensory overload and minimize the meltdowns I get than partake in the noise of the outer world I just don't deal with very well. It hasn't been difficult because I'm am quite introverted and have always liked to spend most of my time on my own.