Does an official diagnosis help

Hi. I have been seeing a therapist for about two and a half years now. We have recently been talking about my possible autism. My therapist has said that although she can't diagnose me, my charatiristics/ things that I struggled with would probably be categorised as autism. I have done research myself  and through speaking with family members, think I am autistic.

Is going through with a proper diagnosis worth the appointment s and stress? I am conflicted, some family members are encouraging me to peruse it, others think it's enough that I know myself and can get help in other ways. 

Did getting a official autism diagnosis help other people?

  • I do believe it helped me - it gave me validation for the feelings I'd long had (and hid) about myself, and it allowed me to give myself permission to explore ways in which I could adjust my lifestyle.

    Look into the 'right to choose' - this allows you to go via your GP and the NHS, yet be seen to by another provider for your actual test and diagnosis (I went with Clinical Partners). For me, it meant going onto a waiting list for about 10-12 months rather than 5 years.

    I did have some initial troubles going through the process - my GP outright refused to listen to or help me, but fortunately the lady at the desk in the GP's office was super helpful and rang a couple other people and found an answer for me and got things moving.

  • I've was officially diagnosed on the 17/4/25, I had mixed feelings to begin with, but after suffering all my life with mental health issues and triggers and the guilt of how I behaved around other people, the diagnosis gave me instant relief from my guilt and understanding of who.i am and why I do what I do. It took nearly 5 years to get the diagnosis but it was worth it. I've started to relax a bit more and not mask as much. So a diagnosis can definitely help

  • The future is a very valid point… I didn’t think about it actually. I had times where I was very highly  productive but now I feel more and more exhausted. Yes it’s sad. Where I live the support group actually does not reply at all, I know there is one in Berlin where I don’t need the official diagnosis, but it’s too far for me. 

  • A diagnosis helped me accept who I am, and why I do and used to do certain things. It explained how and why I have difficulties with some things and it highlighted my strengths and abilities.

    I have had a lifelong struggle with my mental health and diagnosis improved my self esteem and gave me more confidence. The report was detailed and it explained why I am the way I am. I found it helped me to let go of long held guilt over my behaviour and failings. 

    I think that the decision of whether or not to seek diagnosis is largely dependent on the individual’s personality. Some people will be quite content to self diagnose and that is enough for them, also they may not need an official diagnosis for things like their employment. Others may need the assurance of an autism diagnosis and feedback report.

  • Thank you. Hope you and your son find the proper support. 

  • Thanks for your reply. 

    I think it's in many ways. In social situations, in staying in a jobs, coping with change. I have done some therapy to manage my anxiety but it has raised more and more questions of me being autistic. 

    The rest was helpful and did indicate autism. 

  • Thanks for your reply.  I am already used to ignorant comments such as " you don't like like it" since I was diagnosis was OCD as a teenager, although it can be tiring, you just have to let it go.  

    I think I am also looking to the future and wondering if I will need more support then. My family are very good but if I were to need things as time goes on, a diagnosis could help that.

    I think it's a shame you need an official dx for a support group.

  • Thank you for your reply. Part of the reason is to seek help in work, I have trouble holding down long term jobs. 

    From my own research it does seem that most autistic people also have some kind of anxiety disorder too. Good luck with your therapy. 

  • Thank you. 

    Did you find health care providers would understand better after your diagnosis? 

  • Thank you for your reply. I'm glad you have been able to ask for help, hope it has improved for you.

  • Thanks for your reply. 

    I mostly want to know for a better understanding of myself. However, support in work would be great. I struggle to hold down a job, often burning out. 

    How many assessments and appointments did you have to do? 

    Did you find your Gp to be supportive straight away?

  • Thank you for your reply. 

    As I am getting older and I see how other people's lives are progressing I can sometimes feel lonely, I can relate there. A big part of my reasoning for wanting a formal diagnosis is to possibly feel some kind of relief or understanding of myself. 

    Good luck with your unmasking. I actually feel lockdown helped me and was a big part of my questioning of I was autistic as I didn't have to mask as much at home. 

  • Thank you. I think this is a big part of why I would like to know for sure. 

  • Thank you for your reply. 

    I found the screening questions very helpful. My answered indicated that im likely autistic, although I have thought this, my numbers were higher than I expected. 

  • Hi and welcome to the community! Slight smile

    You might find the information here (which includes perspectives from other autistic people) helpful:

    NAS - Deciding whether to seek an autism assessment

    Whilst that article does include links to some screening questionnaires - which you might like to complete in order to get a better idea of whether your suspicions might be correct - you might prefer to use the website below for this purpose.

    Besides offering a very useful commentary for each questionnaire, the website below also enables them to be completed online (with scores calculated for you), saved as PDFs and - if the results support your suspicions and you do decide to seek a formal diagnosis - printed off to take with you to the GP.

    The AQ-10 or AQ-50 seem to be the most frequently used / required by GPs in support of NHS referrals. RAADS-R might also be helpful, although some recent research has thrown doubt on its validity as a screening tool:

    Embrace Autism - screening tests

    If you do decide to go ahead, then you might find this article helpful as a next step:

    NAS - How to request an autism assessment

  • It really is Slight smile

  • It's so liberating to know you're not alone :) 

  • It helped me. It explained a lot, gave me more confidence in myself and made me feel less alone. I can't explain how good the feeling felt when I realised I wasn't the only one like me in the world.

  • I was diagnosed a few years ago (age 62). I wish I'd had some sort of inkling at an earlier age

    After my diagnosis I was initially elated to finally understand why I was feeling so different. For me, feeling any sort of relief was quite short lived as I went through a grieving process for the person I felt I could have been and should have been. Many late diagnosed autistics report feeling this grieving process. Two years on I'm still unpacking the real me as I try to drop a lifetime of masking.

    I'm feeling more at ease with my lack of friends, and lack of a career (I've always worked but unskilled and part time) as I stop berrating myself for not matching up to societies expectations of what a successful happy person looks like. I now understand that I was never going to be able to work full time or have masses of friends (I do sometimes feel sad about that though). I now see just how much support I've  had throughout my life without actually realising it.  I'm not in a place where I fully accept that I was never going to "fit in" but I'm getting there. 

    Getting a diagnosis isn't a magic wand that will instantly make your life better - but it will set you on a path towards a better  understanding yourself. 

    Inula

  • I was very recently diagnosed after wondering and trying to get an assessment for several years. Yes it can be very helpful, for example with adjustments and support in work and education, for understanding yourself, for your own wellbeing and mental health - lots of things really.

    I think, though, regardless of whether it's helpful for those things for you or not, one thing that I found was that I just couldn't let it go. I spent years trying to decide whether to get an assessment, and in the end, now I have my diagnosis, all of that wondering has finally stopped. It's validating and I am starting to put shame aside and accept myself. 

    At least if you request and do the assessment you will know. 

    I will say though. The actual assessment appointments are very tiring and stressful but I'm glad I got them over with! 

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