Hello, looking for support after being told I’m not autistic.

Fruitlesswonderer1234 said:

I just don’t know who I can talk to in this complicated world. 

Me.

If we are your tribe - then we are your tribe.  Just because someone else cannot see or understand that, doesn't make it not true.

I can mask, imitate and emulate like a wizard.  I display zero anxiety (in traditional forms) and I'm odd and unpredictable (in many ways.)  I don't like to make a fuss, but when I do, I really can!  I can be "the life and soul" or a "mute pebble."

Whilst I must trust that some "assessors" have the necessary skills to bypass my nonsense and see the "real me" beneath, I am pretty damn certain that a HUGE majority would "assess" me and "report" on me with a broad array of proclamations about "who" or "what" I am......none of which would agree!

If I wanted or needed someone to "assess" me to MY satisfaction (ie to a point where I felt that assessment had the chance of being valid to my own mind) then they would need to know me for a LONG time and see me in a whole variety of different situations - during which I would need to verbalise to them what my brain was doing in those situations.  The whole dependence on "history" in diagnosis has the inherent weakness of what one chooses* to "tell" and what I chooses* to "leave out."  The whole dependence on "observation" in diagnosis has the inherent weakness that some of us are EXCELLENT at hiding our true selves.....whether we want to or not!

Don't despair.  Hang around here.

Number.

(*- or forgets, or doesn't see the relevance,)

"serial underachiever" really resonates with me. I'm just a few years from retirement and I've spent my working life (mostly) as a full time mum, part time domestic cleaner with an occasional part time shop job thrown in for good measure. Even though I can now look back on my life and understand that my underachieving can be attributed to my autism my inner narrator still insists that I'm lame (probably because I have two autistic family members who have quite high powered jobs) As a very late diagnosed autistic I'm not sure if I will ever make peace with my lack of achievement in the workplace. 

I'm so happy, thanks for telling me. I always hope to be of some help with my replies. 

hello Cosmo, I'm new on here...i really connect with your reply here; i'm undiagnosed and not sure i will go for assesment ( heck i'm 60!) but like you (it seems) i've had decades of therapy , traversed depression and anxiety ...found it hard to fit in , find and stick to a job ( i'm a serial unachiever!!) but feel consoled that you speak of being self-diagnosed and not looking for a diagnosis...i throw myself into art and writing now , and at last its starting to feel that this is the best therapy!! 

Fruitlesswonderer1234 said:

I’ve masked so well nobody can actually see me.

Your only way to work around this in any assessment is to be brutally honest and deal with the facts only. Practicing this beforehand with a friend is the best way to do this to give you confidence in your responses, but try not to script them too much.

Fruitlesswonderer1234 said:

I have my adhd assessment still ahead of me

This is a good reason to make sure you understand what the ADHD traits are and write down which you exhibit, with notes of examples of this behaviour. Having it prepared in writing will help a lot with your your tendencies to underplay or gloss over the info in these assessments.

At the end of the day, you are neurodivergent (you know from the traits you exhibit) and it helps to understand that the labels of autistic or ADHD are somewhat arbitary in that you need to have enough symptoms at a serious enough level to qualify for the title.

You may be 1% short of the threshold so don't qualify but that doesn't mean you can't consider yourself neurodivergent. Identify with any label that helps but understanding the traits is your key to living with them - once you know what they are then you can learn to deal with them and improve your quality of life and identify with whichever group you chose.

Don't expect support from the NHS of charities as they have very limited resources and will only help the most needy of us,

Don't let a by-the-numbers assessment get to you and take control of the narrative yourself.

I believe in your experience, I think your self diagnosis, and everybody's autism self diagnosis is valid. So your autism self diagnosis has helped you feel better? Feel less lonely? Know yourself better? Has made improvements for you in general? Why should it be wrong then? And does it really matter at this point if it's accurate or whatever? It has helped you and that's enough for me! You feel like you belong here and that's enough for us! You are most welcome here.

I am self diagnosed too and I'm not even looking for an official diagnosis, mostly because it's hard to find specialized professionals where I live, but also because I think I'm getting what's important for me just with the self diagnosis. 

Also, I know the pain of not getting the diagnosis. I went to a doctor one time for depression, after years of just enduring it, and didn't get the diagnosis, it was only after I returned and talked about my suicidal thoughts that he gave me a prescription, though I think he still didn't fully believe my depression diagnosis. It was very heartbreaking specially since I always thought I was faking my depression and was just being lazy. 

Fruitlesswonderer1234 said:

That we are, and I get the feeling a lot of people have more evidence than I did for my assessment. I really feel like they missed so much and read me wrong. I think for the assessment they should just set up a secret camera in your house and watch you for a week lol i couldn’t know about the camera because I wouldn’t act naturally, I wish that’s what they could do though! I wish they would read the notes on my phone and watch my saved TikTok videos lol says a lot!

Yes absolutely! No one can get an accurate and thorough depiction of your autistic life through one or two hour assessments.

So sorry you didn’t get the response you were hoping for in your assessment but please be reassured that you are more than welcome in our autistic community!

After all many of us find the assessment process anxiety inducing which therefore significantly impacts our ability to convey why we think we are autistic anyway. It’s quite ironic that the assessment process is not very autistic friendly!

You are one of us!

That we are, and I get the feeling a lot of people have more evidence than I did for my assessment. I really feel like they missed so much and read me wrong. I think for the assessment they should just set up a secret camera in your house and watch you for a week lol i couldn’t know about the camera because I wouldn’t act naturally, I wish that’s what they could do though! I wish they would read the notes on my phone and watch my saved TikTok videos lol says a lot!

I did go through the nhs yes, I’m not in a position to go private unfortunately, I don’t need a diagnosis for anything in particular in life, only my own understanding of myself and my experience. I really appreciate being able to be here amongst such genuinely lovely people. I find it hard to make friends, find support and connect with people so this is very comforting, thank you. Is it useful here for tips and strategies for the struggles we face? Still learning how to navigate the site x

You are very welcome! Self identification is perfectly valid, I am self identified too.

After all, you are the expert on your own autistic experience!

I'm sorry you've had this experience Fruitless. We women are incredibly good at masking and can sometimes be our own worst enemy. I flew under the radar for over 60 years, passing as neurotypical and even now with my bit of paper sitting in my medical file stating that I'm autistic (and probably ADHD) folks still don't believe I can possibly be autistic. You can absolutely self identify as autistic and everyone here will certainly accept that. After all - who knows your lived experience better than you yourself?

Did you have an NHS assesment? Perhaps you could pay privately? I know that's not within everyone's reach but the cost doesn't have to run into £1000s

Inula

I sort of have done, just because it feels like that’s how I view the world, the struggles I have and the things that scratch my brain. Thank you for saying this to me, 

You can self identify as autistic!