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Unsure whether I am autistic and whether to pursue a diagnosis

NAS65792

Hi,

I'm a 32 year old guy. I have never been diagnosed but I have always had difficulty relating to other people and felt like I am different from other people.

I suspect I might be on the spectrum but I also have a lot of doubts because I feel like I am very high functioning in parts of my life and when I am in my comfort zone I convince myself everything is fine and I am just exaggerating things. (And then I have self doubts about the self doubts because I wonder if I've just been in denial my whole life, argh!)

In the past I guess I confused this with anxiety. I started to look into ASD seriously after I got some counselling and the therapist brought it up with me. It made a lot sense because I had so much difficulty even talking to them in the first place and I literally had no idea how to identify/describe my emotions. I also mentioned it to another therapist who agreed that the way I describe things does sound like ASD.

Both of them said that I should think carefully about seeking diagnosis because there are consequences I should consider, for example I might encounter discrimination if I declared it to employers. I am about to start some other therapy for social anxiety and the person I spoke to said that even without a diagnosis if I came to a conclusion about what I think, it would help them to help me better. But I have no idea how to do that.

I made a list of all the things that make me suspect ASD and all the doubts I have, and compared it to https://www.autism.org.uk/about/diagnosis/adults.aspx and when I write it down ASD makes sense. But then when I read about people whose ASD affects them more in their day to day lives I feel like that isn't me at all. I used to be friends with someone with Asberger's syndrome and I always felt like when he had difficulty with making eye contact for example, it was much more obvious than when I have difficulty with eye contact. But then again I see other people on this forum talking about imposter syndrome, and when people talk about masking that feels very familiar to me as well. Top of my list is I have always had a very restrictive diet and trying new foods is very hard for me. I can recognise this as definitely abnormal and it has severely impacted my life, but in the past I haven't connected it to ASD.

I did the AQ 50 test online and got 38, but that didn't really help me because it still feels ambiguous. I didn't know how to answer a lot of the questions because I just wanted to answer "it depends" for all of them.

I guess I want to know what other people in this situation have done. How did you come to a conclusion you were autistic? And also what should I consider before I pursue a diagnosis? What made you decide to do it?

I just want a diagnosis because it would give me an explanation for why I am the way I am and a way to understand myself better. Even if I didn't do anything else with the diagnosis I feel like that would be helpful? The main thing that scares me about getting a diagnosis is involving other people who know me, because I am single and I don't have a good relationship with my family. I don't want to open up to them about this, especially if I pursue a diagnosis and then don't get it...

  • in reply to NAS37337

    Just to add, there is a Social Thinking Conference coming up in London in June.  You can find out more information about it on the Speech and Language Communication website: wwwsltcommunicationcourses.co.uk.  I attended a similar conference 3 years ago after my son’s diagnosis and it was life changing.  It’s geared toward professionals but anyone is welcome.  I highly recommend it.  I’ll be there.  Shirley

  • My son, age 16, is on the spectrum and like you is very high functioning in many parts of his life.  We decided to get a diagnosis for 2 reasons.  First, having a diagnosis gives you the ability to advocate for yourself by having an explanation for what makes you tick.  We don’t see this as a defining label, more of a way to understand yourself and to better communicate your needs.  Secondly, the diagnosis helps you to target support.  We have found and use many resources to support him that have helped him develop more self awareness, more awareness of other and to be more successful in effecting those around him.  He’s a much happier boy.  

    The one resource that has offered the broadest support is www.socialthinking.com.  Social Thinking is a model created by an American Speech and Language Therapist, Michelle Garcia Winner.  Her website is packed with very accessible free information including, articles, videos and many other links.  They look at diagnosis through a slightly different lense which focuses on ‘social competencies’. I think you might find it helpful to look at the article ‘Assessment of Social Cognition and Related Skills’ by Michelle Garcia Winner.  You can find it on her website.  What I like about their approach is that they take the diagnosis out of the ‘binary’ model of ‘either you are or you aren’t’ and focus on what your particular strengths and weaknesses in social competencies. (Btw, strengths can often mask weaknesses.).

    I hope this is helpful.  I’d be happy to answer any other questions or share other resources.  I wish you all the best.  Whatever you are struggling with is real and there is something or someone out there to help you process it and find your way.  Good luck.  Shirley

  • I'm seeking a diagnosis mostly for that reason of understanding myself better. Having a diagnosis can sometimes be useful for getting adjustments at work depending on an employer - though my employer doesn't require a formal diagnosis for this anyway.

    I did the same thing as you in writing down all the reasons why I suspected ASD. I still don't feel 100% sure, but ASD makes more sense than anything else. Though I find it easier to think of it in terms of strengths/weaknesses that I have, as I'm more certain about these, and focus on how best to manage those - I'm trying to avoid stressing about whether or not these equal ASD, until I get assessed. I also found it useful reading blogs by autistic people and youtube videos, as relate more to the ways that autistic people describe things than the clinical criteria (which I find more confusing).

    I don't have a great relationship with my family either, though I'm at least on speaking terms with my parents at the moment. The assessment centre wanted a family member and/or someone who knows me well now to complete a questionnaire, but others on the forum have mentioned this not being able to provide this necessarily being an obstacle. My mum completed the questionnaire, but I haven't decided yet whether I'll tell my parents what the outcome of the assessment is - I don't think they'll ever believe I'm on the spectrum even with a diagnosis.

  • Hi I'm a 34 year old female in similar situation.  I've been reading about it for 3 years. When things are going well,  I think how could I be on the spectrum?  When things are going bad I come back to it. I've been diagnosed with GAD but I know I've had anxiety for years and just not realised how bad it was.  I've been in two minds about going down the diagnosis route. I did find a place in Merseyside which does a "screening" where you have an initial assessment, and I was considering going there but it's not happened yet. I raised possibikty with my GP she said if it wasposituve i wouodnt have to declare to anybody. Having read so much about it, it's helped me realise and mange myself so I don't feel I need a diagnosis at the moment. I have coping strategies now. I have done the AQ tests and found them difficult to answer.

  • in reply to Tinyexplorer

    Thanks for this Tinyexplorer! Both of those are links are really helpful and encouraging. I definitely relate to what the people were saying in that video and what you are saying about it being a constellation makes sense as well. 

    I am going to do some more reading about the diagnostic process as I think I should speak to my GP about this.

  • NAS65792 said:
    I just want a diagnosis because it would give me an explanation for why I am the way I am and a way to understand myself better. Even if I didn't do anything else with the diagnosis I feel like that would be helpful

    You already have your answer. You don't need more reasons. 

    for me understanding and having a name for what was going on in my life was the key reason too. 

    The spectrum is so diverse it terms of how autism affects people, so they say if you met one autistic person, you met one autistic person. There are commonalities of course in the mechanisms of functioning which externally are observed as behaviours. So a lot of the diagnostic speak is completely unrelatable for autistic people experiencing autism from within.. It is not a linear spectrum but more of a constellation on multiple axis. 

    This is a good video by an autistic researcher that can help you to relate to autism in a personal way https://vimeo.com/lss/review/355199883/690247337fhttps://vimeo.com/lss/review/355199883/690247337f

    Also take a look here https://ndsa.uk/content/home/the-diagnostic-process/