Diagnosis late in life: a perspective

I am writing this in the hopes that it may help some of you who have been diagnosed later in life, as opposed to as kids. Since this is my first article I will explain my background a bit, as its relevant.

My background is a fairly complex one. My parents divorced when I was 9, this was due to my father suffering Bioplar disorder and becoming violent. I have to admit that the divorce really altered the course of my life. I did not want to seek any help or admit that something was wrong with me- it clearly was. I was bullied and abused at boarding school, which has stayed with me forever. What is obvious to me now, is that having ASD made me very vulnerable. Others can spot it quite easily, even though it is not clear to the person if that is the case.

I wish to use the term ASD as opposed to Aspergers by the way. Lets be clear about this. Hans Asperger was a Nazi collaborator, according to new studies. you can read more here: https://www.theguardian.com/world/2018/apr/19/hans-asperger-aided-and-supported-nazi-programme-study-says

However, my main reason for wanting to not label as ‘An Aspie’ is that the condition is so broad ranging. I know some people with ASD (Autistic Spectrum Disorder) who display none of the symptoms that I have- for me its very much a social problem, I cannot read body language and do not know how to lie to people, or hide my true self. Ill talk a bit more about that later.

Just to give you a bit more background then- I also suffer from PTSD (not surprising, considering my history of abuse) but also depression which is severe. I always had an interest in neuro biology and in fact gained a PhD in the subject. I know a fair bit about the brain but I can tell you that as scientists we are only scratching the surface. its complexity is unparalleled.

What Im trying to explain is that in this article I have both a long experience with mental health problems (i.e. from my family) and from an academic perspective. So I am fairly well informed. I have some fairly interesting publications about serotonin transport which made the cover of top science journals.

I was officially diagnosed in March this year, although it was suspected I had ASD since 2015. I decided that the best thing to do was to open up about it, rather than hide from it. I had been in denial for so long about my problems, which have followed me throughout life, specifically finding working in group settings very difficult if not impossible, problems forming friendships, and issues with my close family not understanding me at all.

I would also say that bullying has continued to this day, I am in my early 40s now and I have had some extreme cases of this. It seems to me that people are all the more ready to label someone as mentally unwell these days, and being as open as I am has made me a target. This I accept- but I cant change course now.

I suppose what I am trying to get across to anyone in a similar position is this. Think very carefully about who you tell and trust with your diagnosis. It may be that you prefer like me to be as open as possible- it has its drawbacks. some may accuse you of ‘playing a card’ with it. Thats not why I do it, I simply want to be up front with whomever I deal with. Here is an example, I was offered a job and during the period when the contract was being drawn up I mentioned I had autism, and the offer was withdrawn on that basis. That is illegal of course- but I wouldnt want to work somewhere if a lifelong condition is not accepted. So I feel that was for the best.

The other side of this is how your close family may react to this news. If they are understanding, then thats good, however, this may not be the case. My sister has decided not to engage with me over this matter, which hurts me a lot, she got married and I wasn’t even told about the wedding. I cant say I approve of that, but again, its important to realise that some may see you as a threat or be not ready to accept you on the basis of a diagnosis. They may see things as it being an excuse for your behaviour which they disapprove of- god knows I have behaved in a very anti social way at times- so be careful with it.

Socially, I am one of those people who often get labelled as a troublemaker, or as someone recently put it, ‘a car crash in slow motion’. Naturally these comments hurt and demean me. I have found myself in a bad position since my job was cut due to a lack of funds (not because I was bad at it or anything, which hurts more to be frank), and as a result I have had far too much time on my hands. One thing about autism is having a focussed outlet to spend your time on, long term. Obviously working in a lab at Post-Doctoral level gave me that, and I am having to learn to live without it. What I do spend my time on now is composing music and building websites, although its not as fun as working in the lab, at least I am keeping busy. I have linked some of my music at the end of this article if you are interested. 

So anyway. I hope this helps some of you. These are my personal experiences, and I would urge anyone who has been diagnosed to tread carefully. The way I handle things is often wrong, and socially, people tend to be more polarised now- for example seeing these conditions in a very prejudiced way, but you wont know that right away. My own issues also stem from other problems, so its more complicated than just one thing. 

I hope this is helpful anyway. Thanks for reading.

263 total views, 1 views today

Please follow and like us:

4 thoughts on “Diagnosis late in life: a perspective

  1. Hi Jay! Thanks for sharing this. This is the first I’ve heard of Hans Asperger being a Nazi collaborator.. makes me have second thoughts about the name of the site, but it’s a little late to change it now. Anyway, I appreciate you taking the time to share your experience. I’m sure it will be helpful to our community here. 🙂

  2. I prefer the term ASC – I don’t like the association with ‘Disorder’. I understand your reasons regarding Asperger, but I still prefer to call myself an Aspie. I just find it term that most people recognise, and I don’t feel any sense of guilt by association – the same as I don’t by listening to the music of Wagner. However, as I said, I understand your feelings and reasons on this. I think the debate will carry on for a long time.

  3. Interesting perspective. Thanks. I, too, was late-diagnosed at 56 – 3 years ago. Life’s been a challenge!

    I prefer the term ASC – I don’t like the association with ‘Disorder’. I understand your reasons regarding Asperger, but I still prefer to call myself an Aspie. I just find it term that most people recognise, and I don’t feel any sense of guilt by association – the same as I don’t by listening to the music of Wagner. However, as I said, I understand your feelings and reasons on this. I think the debate will carry on for a long time.

Leave a Reply

Your email address will not be published. Required fields are marked *