What do you think of self-identification?

I see nothing inherently wrong with self identification.

As a matter of interest here is a fairly lengthy tale of my move from self diagnosis to formal one. It has a cautionary element as regards employment but the rest is positive.

I self diagnosed just over 20 years ago. At the time I worked in adult mental health and often with Autistic people who were unwell. I triangulated my evaluation with opinions of clinical colleagues. At the time this felt enough and once done I didnt talk about it to anyone as I dint feel the need to. Over recent years, especially as I began to work more with younger people on the spectrum I had felt hindered in being open and honest with clients and their families in relation to speaking from the perspective of personal experience as opposed to professional training. Just over a year ago I went through a formal diagnosis procedure. I wasn't expecting the changes that this brought about.....

At the time I was working for a private social care organisation providing services you young adults with Learning Disabilities and Autism. I thought that when I informed the senior management of my diagnosis they would view this positively - how wrong I was. The CEO told me that he was really worried about families knowing this as they might question the competence of the organisation for having someone with Autism in a key role. I was told that I must 'keep this quiet'. Major components of my role were given to other people and I was sidelined to the periphery of decision making. This is the first time that I had been treated like this in a long NHS, Local Authority and independent sector career in care. At least I now had personal experience of how it feelt to be treated differently due to a diagnostic label!

On a personal level things changed too. The process led me to reflect on my life in a way that I hadn't so far. Many things, events when I was child, my very difficult teenage years and transition into adulthood, failed marriages, anxiety and mood disorders and much more began to make sense. I began to move away more a default state of self criticism, guilt and shame to a more balanced state. I stopped being so hard on myself on a day to day basis and felt less compelled to engage in exhausting masking behaviour. I concluded that I should have left it so long after my initial suspicions and self diagnosis to have things confirmed. My family also now had a formal model by which understand my 'eccentric' behaviour and this was helpful all round.

As regards my work situation I started to resolve the situation via formal mechanisms and relationships deteriorated with key managers. It was clear that they wanted me gone and in the end I left with a financial settlement. Part of me wanted to make the whole thing public and show NHS and Local Authority commissioner what the culture of the organisation was at the top - and how this must influence every part of services, By then though I had enough and just wanted to get away from the stress and arguments. I left quietly with a financial settlement. Part of me thinks I owed it to other people with Autism to act in a more political way and draw everyone's attention to these people - but another part thinks that it was right to do what was best for me at the time considering how stressed I felt. I probably need more time to reflect on this.

This prompted some major changes for me.

I now had a formal diagnosis on my NHS health record - something my GP referred to but in a positive way as regards asking whether I need referral for any support. He said that it was a good thing that there was this point of reference on the system in case there was a need to access any additional support in the future.

I brought forward my plans to move from the South East of England to my wife's home area in the South West. I went back to work for the NHS in services for children with disabilities. I was open about my diagnosis as I didnt want to go through the same employment issues again. The difference in attitude compared to me previous employer was like night and day. In my new post, the fact that I was Autistic was viewed as a positive asset. Clients and parents could speak to a health professional who could speak from personal as well as professional experience. The clinical team that I had joined began to refer more complex cases to me and use me increasingly for consultative work around Autism including being involved in a new ASC service. Work wise I feel that I am at my most productive and fulfilled for many years.

In summary - I view the process of self diagnosis / identification as perfectly valid, At no point did I feel like a fraud to myself - however as I didnt talk about it to others then I am not sure how it would have felt from that perspective. The move to formal diagnosis had implications work wise that I hadnt anticipated (perhaps I was too naïve) but I ended up in a much better place as a result.

We are all different and have to follow our own path - self diagnosis / identification may well be absolutely fine for some. 

Thank you so very much for Sharing your story. I really do appreciate it, and  your advice. I told my manager that a therapist and GP believed I had autism. She was excited, I work with young children who have ASD and my manager wants me to be an example to parents of how you can still live a fulfilling life. I honestly don't want this and will let her know, I feel that parents may question my professionalism. At the moment I would like a diagnosis, just to confirm, though I'm not sure why I need that validation. My whole life now makes sense to me. The things I hated about myself I can see in a different light. I have only shared this with my husband and manager at work.

Again, thank you so much for your insight.

Pikl said:

She was excited, I work with young children who have ASD and my manager wants me to be an example to parents of how you can still live a fulfilling life.

Wow - I understand the manager's sentiment - but how utterly degrading for you - we keep you here as our token autie   "look, everyone, we've trained her not to pee on the floor". (round of applause from parents)

I might be a little concerned about how the manager regards you in connection with career progression - are you now stuck in the 'we didn't want to add any more stress' trap?

Everyone clap the trained monkey

Everyone clap the trained monkey