What do you think of self-identification?

It really is outrageous! I've been diagnosed with depression and anxiety, on medication. It really is ridiculous.

That's outrageous that they don't diagnose adults unless you have learning difficulties! Could you possibly exaggerate the mental health side of it and say it causes anxiety?

Thank you Plinky. 

Only 'you' can truly know yourself. Either you know if you are ASD after your extensive personal research or you know you are and you want support because of it. Until an official body recognises and states de facto in writing that you are then support will not arrive. Sometimes it is enough to just know.

Thank you. I had been diagnosed with major depressive disorder and with generalised anxiety disorder, hence the therapist. At first he was confused as to why I had them without a cause. Then things I had said led him straight to ASD. The more I spoke, the more convinced he became. My mind has always been my greatest asset, and by far my greatest enemy. I'm so pleased your finding a way to navigate the brain tricks. 

I guess those of us with "high functioning" autism might often suffer imposter syndrome if we're managing to navigate life ok. For me it just explains why some things are just so hard for me, but knowing the dynamics from reading means things are less hard as I now know the tricks my brain plays on itself.

We're all here trying to make sense of life, get some support, and learn something to make life easier. If the forums, reading, other places and adopting the identity help you do that then I think that's fine whether in the end you have autism or not. The only problem would be if you're actually suffering from something else and digging into the autism world stopped you realising that and the life improvements that'd bring. In your case I'd trust your therapist and GP, neither will have said it lightly, and both probably have some experience of other autists to compare you with.

Thank you so much BassFace. I did have a referral but it was rejected, my area doesn't diagnose or support adults with ASD unless they have learning difficulties. So either I fight, try and find another way around or just accept it. I really appreciate your advice and your words of wisdom. Thank you.

I would say self-identification is absolutely acceptable - it's very unlikely that your therapist, your GP and yourself are all making it up ;) But it is common to be unsure, because we've never known what it's like to be non-autistic! Of course, there are some things that you would need a certificate for - e.g if you need financial support or special arrangements at work or in education. And there are some jobs (e.g in the military) that a diagnosis would prevent you from doing.

If neither of those things particularly matter to you, then the most important question is whether you personally want the validation of an official assessment. The fact that you are obsessively researching it and going on this forum suggests that you are looking for answers and maybe a diagnosis would put your mind at rest. Only you can make the decision (unfortunately). On the plus side, if you think you might want to get diagnosed but you're not sure, you can ask to be referred and then exit the long waiting list if you change your mind. (I hate committing to big decisions, so this is how I justified it to myself.)

Hi Dickie, sorry but for some reason I can't directly reply to you. I'm happy that you've found things make a lot more sense for you, they do for me also. As you said like a mist has cleared. Completely understand why you're not seeking a formal diagnosis,  sometimes it's enough that you know. It was a therapist who told me, quite bluntly. I don't mind though. I don't NEED to have a diagnosis, it's just that I'm afraid that I've finally made sense of myself but have that niggling fear of what if I'm wrong and I am just weird, with a flawed personality. I move between self acceptance and doubt. I think it's because I always have to have definitive answers, yes or no, I don't like grey areas, even if I believe them to be true.

Hi Pikl, it has taken me 67 years to find out that it is highly probable, almost certain, that I have been living with level one ASD all my life. I have been in therapy for a number of months because lockdown has accentuated some of the traits that I have always found to be annoying and frustrating. Last Wednesday I was talking to a friend who is probably level two and also has paranoid schizophrenia. We have spoken a lot over the last year but it suddenly clicked with me that, although we have wildly different world views, at least some of our approaches to life felt familiar. So, I did the usual thing - went on line and did a test. Then I did another and another and they all came out the same. I raised this, rather tentatively, with my therapist last Friday and she agreed with my self-diagnosis. She has thought this from our first session but didn't want to raise the subject because it is not always welcome.

Like you, I feel like a bit of a fraud at the moment, but I won't bother seeking a diagnosis because at my age it would be a waste of time. However, knowing that it is highly likely that I have ASD is an enormous relief. Things suddenly make sense, with one or two exceptions, and it's like a mist clearing.

Everyone clap the trained monkey

Pikl said:

As for back to my normal self, right now I have no idea what that evens means. Unless it's pretending everything is great.

Yeah - you've got to be more perfect than everyone else just to be rated as barely adequate - all while performing under a microscope.

I was honestly mortified when she said it. I know that she meant well but I still had visions of being paraded about like the latest addition to a freak show. I sadly have been added to the no more stress trap, although that was due to a coping mechanism that I let slip. I know have to show I'm back to my normal self. I can't stand not having a quantifiable goal, that I can actually visualise. As for back to my normal self, right now I have no idea what that evens means. Unless it's pretending everything is great.

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?

Velorum said:

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.

Velorum said:

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.

Utterly disgraceful behavior and ignorance. That must have been a horrible experience. They deserve to have their license revoked and shut down. 

Velorum said:

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.

Wonderful story. What a positive outcome !

Thank you! That's a great way of looking at it. I will probably swing between wanting the diagnosis and not needing it, with varying degrees of obsession, but that's me.

You could think of your autism as a religion - something you don't discuss with anyone but it's a way of living that gives you peace. 

I have some attention seeking family members, they make me sick. I would never disclose anything to them, they would jump on it immediately. I understand what you're saying about fakers, and now I'm thinking I do need that diagnosis. I honestly don't need any benefits, nor do I want any for the sake of it. That should be for people who need the support. It's about me understanding and helping myself. At the same time I wouldn't want anyone to think I was a fraud.

On the flip-side, I know a number of people who claim to be self-diagnosed autistics - including my sister-in-law - she's an attention seeking narcissistic nutcase who has every fashionable problem going - but she's not consistent with her stories so just looks stupid.

There's also the army of benefit fakers who try try on with the DWP - anything that cannot be directly measured (like missing a leg) is faked these days, especially autism..   It makes them very suspicious of us and complicates our PIP applications.