To Get A Formal Diagnosis or Not? ADVICE please!

I visited my GP yesterday and spoke to her for the first time about Aspie’s. She said that she would refer me if I wanted but posed the question what would it achieve? Or rather what would I want to achieve? What are my reasons for seeking one? 

I need some opinions and experience about self-diagnosis vs formal diagnosis...I have some reasons already which I will inevitably list at some point...

but for now I’m just interested in a general opinion so I can make the choice a little easier...

many thanks for your helps!

  • Hi Sashina,

    I had the same experience - the whole process was pretty traumatic and I wasn't prepared for it at all.  My anxiety went through the roof following the assessments and I convinced myself I was being a hypochondriac and that I had wasted everyone's time.  Turns out I am autistic and my reaction to the whole process was a result of my not being prepared and having a coping strategy in place following the assessment.  Keep an open mind and don't jump to conclusions either way, but it is good that you have a back-up plan in place.

    Hope you get your results soon.

  • Hi Danny, what did you end up doing? 

  • Update: I did get a referral from my GP, and was able to arrange an assessment through my employer's private health insurance (not all insurers cover it). It took a bit of time to find a psychiatrist who worked with my insurer (they would only cover assessment by a psychiatrist or psychiatrist-led team), but I had the assessment in mid-December.

    It consisted of a session with both a psychologist (who also interviewed my mother by telephone) and the psychiatrist. The former was a positive experience but the latter was pretty awful. I wasn't prepared at all and it felt like a job interview! No 'bedside manner' at all and what felt like very little engagement, which all seemed pretty inappropriate for a mental health professional. 

    The information from my mother was not deemed to be useful enough, and the two practitioners were going to have to confer further on my diagnosis. The Christmas break has intervened, meaning no diagnosis until the new year. To be honest, I'm preparing myself for a negative diagnosis, and have a back-up plan ready.

    What I had not prepared for was the anxiety it would cause. Don't underestimate how much this process can take out of you. If you're working, I'd strongly recommend taking a day or two off work to give yourself the mental space. 

    I'll report back in the new year!  

  • Hi. I am new to the forum. 

    My wife is  Dr / Psychology  and found me "odd" in behaviour often!  My GP Was dreadful and wanted to put me on anti anxiety meds. ...I refused!  I contacted  The Autistic Society  And they were the best organisation I have ever met!  Love them!  I returned to my  GP  And got formal diagnosis for  OCD  And  Social Phobia. Some. ..Not all of "the vail" has cleared. I am still "awkward" however realise the fact!  

  • Hi Everyone, This is very interesting. I was told I have autism when I was 44, I will be 50 soon. When you are an adult there is little reason for a formal diagnosis. However, knowing if you are on the spectrum can be very helpful. It can be helpful for the people around you, it will help them understand why you do the things you do. It can be helpful by allowing you to find help to understand why you do the things you do.

    Knowing what a problem is means you have a chance to address the issues caused by the problem. There are coping strategies that can help you navigate the wider world around you. Knowing you are not the only one, you are not alone.

    I now work as an Autism Advisor for Barnet Mencap and we recognise that it is hard to get a diagnosis and there is a long waiting list. While waiting the anxiety and issues do not go away. With this in mind we are offering Adults who live in the London Borough of Barnet free Autism screening.

    We also will be offering post screening, life and action planning as well as a number of services designed to help people understand their Autism and the wider world in general.

    If you live in Barnet and would like to speak to me for advice or a screening please call Russell on 0208 349 3842

  • I too have been wondering whether to get a formal diagnosis. Like you, I think it will help me to know (and have confirmed) why I am the way I am.

    I found writing down every probable Aspie thing in my life quite cathartic, though I am only up to 11 pages so far! Tbh since I figured it out for myself, I haven't had the run of emotions that most others have described, just plain and simple relieved. Relieved that I finally know why. It is enlightening, isn't it?

    I think I will go down the formal diagnosis route, and I may quietly mention it to my boss (though I have a sneaking suspicion that he already knows). 

    All the best with your appointment and hope you find peace and contentedness at the end of the tunnel

  • I've been referred by my GP, accepted for diagnosis and am awaiting an appointment.

    Why do I want formal diagnosis?  It's information!  I'm curious, I love knowledge and want to know why I am as I am.

    What will I do with that information?  Well, it will help if I ever need to change job, will formally explain to my current employees why I react and work in certain ways.  I've already adapted at work by obtaining noise-cancelling headphones which work with the phone and computer - they help cut the background prattle out.

    Even thinking of getting the diagnosis has been enlightening - writing my (currently 28 page) document of my history and traits has shown me that it's not just me imagining it or being wierd, but that it's real and has a cause.  Diagnosis, be it formal or otherwise, lets me be easier on myself.  So when I'm greeting people (Hi, rather than 'how are you - doing well?', etc) or abrupt on the 'phone at work, I know it's not me being deliberately rude, but because I can't (easily) help it.

    Then again, my wife doesn't wish to seek formal diagnosis - and that's OK.  Her employer, we suspect, has a lot of Aspies working for them in similar roles to her, and it's a profession known for being suitable for Aspies/ HfASD. She has enough knowledge to look out for problems she may encounter.

  • Hi Bonniepurple - I feel the same, but with that niggling fear that a 'negative' diagnosis could leave me feeling pretty disappointed, to be honest. It all makes sense to me now, in my mid-40s... I have a fear I'm not 'extreme' enough (I'm a high-performing professional with fairl full-on job, but having just read Sarah Hendrickx's Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age, I can identify many of the coping strategies I've subconsciously adopted over my life to fit in.

    I've not yet approached my GP, but am going to ask when I next see her.

    Good luck everyone!

  • Hello,

    If anyone reading this thread is ever unable to cope with distress or despair, it’s very important to tell someone about your feelings or thoughts of suicide. Call your GP and make an urgent appointment. Your GP can make sure you get appropriate help and support.

    If it’s outside your GP hours call  111  to reach the NHS 111 service:   http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx

    The Samaritans also provide confidential non-judgemental emotional support, 24 hours a day on 116 123, or by email on jo@samaritans.org.

    MIND have information pages on coping with self harm or suicidal feelings based on the experiences of people who’ve been through it that you may find helpful.

    If you are ever very close to doing something to hurt yourself - call 999 or go to your nearest A&E department. There should be someone there to support you and make sure you get ongoing support.

    If you need help with an autism related issue, our helpline can be emailed on autismhelpline@nas.org.uk or they’re open Monday to Thursday 10am-4pm and Friday 9am-3pm on 0808 800 4104.

    Nellie-Mod

  • Yes, get a "formal diagnosis" for LEGAL REASONS (!). It is just like any other non-visible "disabilly", in that, so long as things in your life go well, you need NOT declare it... but as soon as something bad happens such as freezing-up or freaking-out (!) then you CAN state THAT as a reason why (even if you don't understand why for yourself at the time). It is a sort of back-up, giving you a second chance at re-stating your case/position or/and opinion. (...Usually. (!))

  • I agree with you and I'm 49 and a half and until I focused on some specific parts of the issues I've had all my life no one including me would have contemplated autism as the reason.  That still makes me very sad.  A tent, a caravan, a hut a  long way from anyone all sound appealing but normal life continues with no apparent way out.

  • I have had the feelings of wanting to live alone in the middle of nowhere away from society and also the feelings of not wanting to be alive.

    the fact you are alive today is a testament to your charisma. some people couldn't have stayed here so well done! keep sticking at it i know the feeling too well. for me at least for me it comes and goes but just know your not alone 

  • I’m glad it’s been positive for you and that it’s helping you to be independent. 

    I recognise what you’ve said in the first sentences. I’ve spent forever feeling left out and seeing myself as weird and just wanting to be understood, knowing that there wasn’t something typical about me and feeling bad about myself - it’s affected my self esteem, confidence, jobs, relationships and so many little things. I’ve frequently thought I’d be better off in a hut by the sea on my own away from the chaos, confusion, misunderstanding and rejection, either a hut or just better off dead. But my finding my girlfriend has helped me so much, she’s very understanding and supportive. She’s helped me be better at facing the world more openly.

    thanks for commenting

  • Thank you! That’s really helpful! Looking back over my past employment I feel that I’d been misunderstood and treated badly, and I couldn’t understand why things had happened the way they had, and that a lot of the way I was treated was through being seen as neurotypical, if I’d had a formal diagnosis then I would have been better protected. The irony is that i worked in a special needs school.

    Thank you for sharing your experience, it’s a really awful feeling to be hounded out for no clear reason and being left confused. 

  • in my case it made a lot of sense of problems i had my whole life before diagnosis i thought i was just really weird but now i just know  i have a disorder and not to beat myself up plus it helped able to access certain services that i couldn't before such as getting me a key worker to help with things i used to get my mum to do the problem with my mum helping me 247 was that i was making my mum very tired and stressed having her help me so often with all aspects of life. now im heading slowly towards being  more independent and possibly moving out my mothers house after diagnosis i can get  help to find more suitable housing options that i could before diagnosis. as well as now being able to access the correct benefits i am eligible for as before i had to struggle 

  • Back to self diagnosis vs formal diagnosis !!!!

    Forgive me for repeating what I wrote here several months ago.

    I need money to live on but I am finding it very difficult to find paid work.   Currently I have people from four agencies helping and advising me.

    After my latest suicide attempt I was advised by a mental health team to get a formal diagnosis and my sister was a driving force behind this.  Before then I knew next to nothing about autism.  My sister works in an Autism friendly workplace and said that two of her workmates are officially autistic, yet I seem more autistic than them and have more problems with life.

    I described an incident back in 2001, which really hurt me.  I told them (mental health workers + sister) how I was sent by the job centre on a work training scheme which guaranteed a proper interview at the end with a major supermarket (Tesco).  The job centre made clear that if I didn't attend, misbehaved or was thrown off this course. For ANY reason, then my benefits would be stopped.

    After a week I was called into the training centre, manager's office.  And he asked me to leave the centre and course.

    I asked him for his reasons.  I turned up every day on time, I took part in all the activities and as far as i could see I hadn't done anything wrong.  

    His eventual reply after a lot of hesitation was:

    1.  I didn't fit in with the rest of the group.

    2.  It was obvious I didn't belong here.

    3.  The course trainers are terrified of me and just want me gone.

    4.  And a supermarket would not employ me in a million years.    So there's no point in me being there.

    5.  Just LEAVE!

    So it was back to the job centre.   Where my job advisors reaction was, "I just give up!"

    My sister's opinion in 2016 was that with an official autism diagnosis this would not happen and I would have been protected by disability discrimination legislation.

  • No real problems at work.  My colleagues know, too, and are mostly supportive.  But then, I work with a pretty mixed bunch of people, including a gay man who's suffered horrible discrimination in his past.  On the whole, they're all tolerant of difference.  Not the same in a lot of workplaces, unfortunately.  But even if I was having a negative experience, I'd still want the diagnosis.  I was self-diagnosed for a time - but the uncertainty was always there.  I wanted the validation.  Scoring high on the AQ test and knowing that you have certain behaviours and issues is one thing.  But - for me, anyway -  having it all formally and professionally recognised and validated was absolutely necessary.  Maybe, though, that's partly connected to my autistic need for order and proper understanding.

  • We know who we are now, or we are getting there. x

  • Thank you for taking the time to write a reply, I agree with your thoughts about the validation, I said to the doctor that I know there is something not quite typical about me and have been searching for what it is, I need something to show other people and say ‘look you have a go at me and want me to behave in your way but I can’t and here’s why!’ I’m not looking for anything else, although beinag covered by the disability discrimination would have been helpful in my last two jobs!) 

    How has it been at work for you since formal diagnosis? 

    Thank you again for sharing your experience, I appreciate it. 

  • Identification  = connection... ASD all over x