The other side of the coin

Hi everyone,

A brief introduction - I am a thirty year old woman, and during my twenties there was a conversation that I had three times with three different friends. Here is the jist of it:

Friend: "I think you might have Asperger Syndrome."

Me: "Oh. What do you think I should do about that?"

Friend: *shrug*

These were all people who knew me well, and all had some knowledge/experience of ASD (one had Asperger Syndrome herself, one worked with autistic adults for several years, and one studied ASD at uni). I understood where they were coming from. I have had issues with social interaction since I was a child, being socially passive and very uncomfortable with prolonged socialising. Sometimes I really struggle to process what people are saying, which led me to think I had hearing issues for a while (it turns out my ears are fine). I thrive on routine and often feel lost when my life loses its usual structure. I'm also hypersensitive to heat, cold, and food textures. 

However, there are other things that make me think I don't have AS. For example, I consider my empathy skills to be fairly good - I can often tell how people are feeling from their tone of voice or even their posture. This makes me think that my social issues might just be due to an introverted personality. Also, I'm the type of person who could easily be stereotyped as having AS - I'm nerdy, brainy, and I also happen to be asexual/aromantic (I don't experience sexual or romantic attraction) which people seem to get confused with AS for some reason.

I've been struggling with my anxiety lately, which makes me think I should investigate this so I can deal with my mental health more productively. I'm considering asking my GP for an assessment. I've read a lot of testimonies from people who got diagnosed as adults and they mostly seem very positive. So many people say that it helped them understand and accept themselves, and that they have no regrets about getting diagnosed.

However, I am interested in the other side of this experience. What about the people who get assessed for ASD and find out that they don't have it? Does this come as a relief, or a disappointment? Does it just leave you with the same old questions and no support? Maybe this isn't the best place to ask this question, since I suppose most people on this site do have a diagnosis. But Google is being useless so I thought I should give it a go. Any information you can give me would be much appreciated.

Thanks for reading through this very long post!

  • Well I had plenty of misdiagnosed as a child, as in the 60's this was seen as mental illness! It was evidently decided I would grow out of it though and then I was made to feell like an attention seeker for going to the GP for anything at all! Then at uni I got no end if flak for avoiding eye contact and generally being called weird, strange, detached. Great!

    Unfortunately I hear it can depend on how the examiner applies the criteria. It is subjective alas as there is no blood test or brain scan that will show up autism. And there could prove to be more than one type of autism anyway.

    I have not pursued a diagnosis and this is not the time to ask for one with all the trouble Brexit is causing. It upset me a great deal when the question reared its head before I left the UK but being caught up in two previous recessions did not do much for my confidence. I could not have borne the idea that I might be disabled enough not to be able to manage my life and make my own decisions as an adult without help. Now after having already worked for more than 20 years I know I can be an am totally able to live my life without help. Largely that us all that matters though I am still very pleased to find a forum where I can meet other people who have shared what I presume to be similar life challenges 

  • Dear NAS37143,

    You may like to look at our information about autism spectrum disorders:
    http://www.autism.org.uk/about/what-is.aspx

    If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:

    http://www.autism.org.uk/about/diagnosis.aspx

    Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section:http://www.autism.org.uk/directory.aspx

    You may like to have a look at the following page which includes personal accounts, which may help:http://www.autism.org.uk/about/adult-life/stories.aspx

    It might also be useful to pass on information about autism to health professionals when seeking a diagnosis. The following page includes information for a range of health professionals:
    http://www.autism.org.uk/Working-with/Health.aspx

    If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

    I hope this helps,

    Mod-Federica

  • I have seen many people posting here and on other similar sites about being certain they are on the spectrum and then being told they aren't by a "professional" who is supposed to know. The reasons they have been given always seem to be so completely ridiculous, leading me to think that the "expert" was wrong (and the person who went for the evaluation had clearly come to that conclusion as well). There might well be others who have gone for an evaluation, were told they weren't on the spectrum, and simply accepted it, but then I don't think they would come back to a website populated by people on the spectrum. For that reason, I don't honestly think you'll get an answer.

    You have social difficulties and sensory differences, which suggests a diagnosis of ASD. You have found ways to compensate, for example by interpreting the emotions of others by their tone of voice or posture, instead of by looking into their eyes, which is how neurotypicals apparently magically know exactly how another person is feeling. Many people on the spectrum have learned to compensate and wear "masks" because there is pretty much no worse social faux pas than not to appear neurotypical and the penalty is quite harsh.

    The idea that we don't have empathy is a myth. Also, ASD is a spectrum, which means that people on it have unique strengths and limitations so there is not one single metric that can be used to decide against a diagnosis. I believe that this is one condition that is more reliably self-diagnosed than diagnosed by an expert, just because there are so many so-called "experts" out there that just aren't sufficiently competent with the diagnostic criteria, and a few hours in an evaluation session is simply not long enough to communicate a lifetime of difficulty.

  • There might well be others who have gone for an evaluation, were told they weren't on the spectrum, and simply accepted it, but then I don't think they would come back to a website populated by people on the spectrum. For that reason, I don't honestly think you'll get an answer.

    Yep, that's what I was afraid of!