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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...

Parents

  • 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

Reply

  • 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

Children
  • 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