Late autistic diagnosis

Ideally it is best to be diagnosed in childhood. However, we each have our own journey and these things happen for a reason even though we may not understand them.

I was raised by two autistic parents that went to their grave without knowing. My upbringing was extremely dysfunctional and traumatic being parented by two people who didn’t have clue what they were doing and my mother was violent. If I had been diagnosed perhaps in my twenties my life may have been different as I may not have also taken the path I did to fit into society. To be finally diagnosed at 64 was both a relief and a sad moment because I felt like my life was a lie.

I believe my mother spent years trying to bash autism out of me. I believe I was a constant trigger of them not understanding their neurodivergence. Being autistic is not an excuse for being violent and emotionally abusive. Even though my father never laid a hand on and was a kind man, he still allowed this behaviour towards me without doing anything.

My father was so much like me, and I believe he was autistic as well. He was brought up in foster homes because his father gave him up and his other siblings when their mother had the worst kind of post-natal depression. She went into a mental institution and never came out. .

Diagnosis in the 60s would have most likely put me in an institution. The 80s unlikely but they didn’t know enough about autism then, but I would have still been better off being diagnosed much younger than 63. It makes you wonder if there was ever a right time to be diagnosed. The psychiatrist who did my assessment said 10 years ago he probably would not have picked it up in people as easily, yet said it was so obvious to him 10 minutes into the assessment that I was autistic.

I became a trained nurse when I left school for the first 20 years of my working life. I didn’t have children because I knew I wasn’t cut out for it and would have needed a lot of support to do it. I didn’t know why then, but it makes sense to me now because my support needs are not low. I watched my friends have their babies and knew I couldn’t do it. I was everyone’s babysitter and people trusted me with their children. I do not regret not having children.

Self-diagnosis is very valid but many aren’t happy with that for themselves. I thought I was good with self-diagnosis but I wasn't and had only tried to convince myself I was.

It also doesn’t get you accommodations, or taken seriously by most people in my experience. I worked my entire life without knowing I was autistic so have never received work accommodations or validation for my trauma.

In 2021 after self-diagnosing, I started doing my own extensive online research. I took many tests for autism, analysed my childhood and adult behaviour, documented what I remembered about my childhood, and what my parents told me about my behaviour growing up. There were so many alarm bells it escapes me how no one recognised I was autistic. I complied this into a report to support my autism assessment. By that time, I had also allowed many of my autistic traits to be seen which I'm sure made a difference to the outcome as well.

I was officially diagnosed as autistic level 2, as well as generalised and social anxiety in November 2022 at 64. I assumed I would be diagnosed as level 1 autistic. although I don’t think we should focus on levels but rather our actual support needs a level 2 diagnosis did validate the many things I have needed help with in my life which were not low support needs, only my ability to pretend I was high functioning. Since my diagnosis I have been gradually allowing more of my autistic traits to shine through which has been liberating.

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. It was important for my mental health to get a formal autism diagnosis. It matters a lot if we have not been diagnosed with autism. I have spent my entire childhood, education, working life, and 25 years married, not knowing, without accommodations and support. I was born in 1958 and grew up in the sixties, so if I had been diagnosed then I would likely have been cast aside.

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. Many of us need validation for the sake of our mental health after decades of dismissiveness and gaslighting. If a person is at peace with self-diagnosis, that’s good but never tell someone they don’t need it when it’s what they need to move forward.

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 ideations 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.

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.

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. 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.

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 the end we need to find acceptance within ourselves no matter what others think about us.

I am self aware but I didn't know I was autistic. Decades of trying to hide my autistic traits caused a lot of trauma and inner conflict to appear so called normal. I have never found it particularly easier to pretend to be someone else even though I rehearsed neurotypical behaviour at home. I masked my autistic traits when I didn’t feel safe and that meant I masked a lot. Now I hardly do it because it’s exhausting and harmful to my mental health.

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 autistic seems to open the door to other realisations. I also later realised that both my parents and sibling were all possibly autistic and several other family members. All my immediate family are dead, so they died not knowing.

As I have aged, 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 without friends other than my spouse for several years now. It hasn't been difficult because I'm am quite introverted and have always liked to spend most of my time on my own.