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.
I use identify first language because being autistic is an inherent part of my identity and frames a lot of how I need to live to thrive in a sensory triggering world. Being autistic isn’t separate from myself. However, it is not everything I am. I have spent most of my life thinking I was dropped off on the wrong planet.
For me, being autistic it is impossible to separate from that as it is part of my identity thus an integral part of me. It makes clear my neurology and defines my state and how I see the world around me. If I wasn’t autistic, I would not be the person I am, so it does define me.
We are all unique and here to fulfil our purpose in life through what we learn experience and understand about life. I view myself as a citizen of the world who happens to view the world through neurodivergent lens, and that will have a significant bearing on how I choose to live a meaningful life.
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 a formal autism diagnosis. 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 growing up.
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 autistic traits drawn more attention to me when I am sometimes out and about, I don’t care what strangers think of me anymore, and my mental health is better for it.
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.
We often hear that when we discover we are autistic it makes our whole life make sense. Many might not realise that this is often the case for the non-autistic people in our lives as well.
I realised I was autistic on my own and was officially diagnosed as autistic in November 2022 at the age of 64 but the penny dropped when I was 63 in 2021. I was assessed for both Autism and ADHD in 2022. I was not diagnosed with ADHD. I received an autism level 2 diagnosis along with social and general anxiety. I am currently awaiting an assessment for C-PTSD in April this year.
My spouse said if they had known they would have done things differently, and that it made their relationship with me make more sense. However, we cannot change the past even though it’s hard not to wonder what life may have been like had we both known.
I grew up in the sixties so it probably wasn't a good time to be diagnosed as autistic given the understanding of autism then, I would have probably been cast aside. However, I would have liked to have known much earlier as I was raised by 2 neurodivergent parents and one of them was mentally and physically abusive. I experienced decades of dismissiveness, gaslighting and ridicule from my family, schoolteachers and others. Diagnosis is not reason for abuse as abuse is a choice.
It would have been better not to have lived more than 6 decades without knowing at this age, as I was retired and had navigated and muddled through so many things I didn’t understand. The trauma came about because of decades of abuse and very difficult life experiences. If we were accepted in life more by others it may have make it easier for us to accept ourselves. However, in he end we need to find acceptance of ourselves no matter what others think about us.
The trauma came about because of decades of abuse and very difficult life experiences I did not no how to deal with. If we were accepted in life more by others it may have make it easier for us to accept ourselves. However, in the end it is an inner journey and we need to find acceptance of ourselves no matter what others think about us. I am currently awaiting an assessment for C-PTSD in April 2024.
We can have great self-awareness without knowing we are neurodivergent. But everyone’s journey is different. Maybe this was so for me because I took a path of self-discovery and spirituality in my early twenties’, and I have always been very intuitive.
The thing that caused conflict with my self-awareness and intuitiveness was the decades of masking so to appear to fit in which for the most part I did a poor job of. I have never found it particularly easier to pretend to be someone else even though I rehearsed neurotypical behaviour at home. I masked when I didn’t feel safe and that meant I masked a lot. Now I hardly mask because it’s exhausting, and I basically don’t care what people think anymore.
I also realised many things about my gender identity which I’ve written a article on. Even though I had been non gender conforming all my life I had not identified as non-binary until after my autistic diagnosis. It’s not unusual for many to realise these other things about themselves, as being diagnosed as being diagnosed autistic opens the door through the unmasking journey. I also later realised that both my parents and sibling were all neurodivergent and several other family members. All my immediate family are dead, so they died not knowing. It all explains an awful lot.