Diagnosis experiences

Hi, I'm relatively new here. I have suspected that I might have ASD for several years and am looking to get an assessment to make sure. I think the symptoms describe me very well, and I would like to know the answer. However, on the majority of NHS and private clinics websites, they would like you to bring a family member for the assessment. And I feel the request to bring a family member is a major barrier. One reason is that there is so much stigma associated with ASD, I am quite sure my parents would not want me to get a diagnosis. Some clinics do offer assessments without relatives' involvement, but add that it sometimes may not be possible to reach a conclusion without enough information. I don't have any close friends I can take with me to the assessment either. I was wondering if anyone has ever been through a diagnosis assessment alone and can share their experiences. This would be very helpful! 

  • I've only just seen this comment, but it sounds very similar to me. I wanted to know what to expect, why this procedure was worth doing, how I would know it was working. what evidence there was that it would work for people like me... I got complete non-answers like 'it's different for every person' and 'I don't have the answers, they have to come from inside'. If I had the answers inside, there would be no point in going.

    My therapist never suggested autism, but the fact that trying to talk about the bad stuff made me feel worse led friends to suggest it. But 'treatment-resistant' is sometimes used in the context of drugs too, when they don't want to admit the Drugs Don't Work.

  • Looking back, I have come such a long way. Compared to a few years ago there was little hope. But, now it is a different story.

  • Thank you for your comment. Very much appreciated. 

  • Yes, this is very helpful. Thank you for sharing your experiences! I'm glad to hear that you had a pleasant experience. I hope mine can be as well.

  • The 'Resistant to Therapy' comment was my abbreviation of her observation that "I couldn't allow any form of therapy to help me unless I understood it completely at a Scientific level", to which I replied "What is wrong with that?"

    I actually got on very well with my therapist over the twelve months that I saw her, it's just a shame that apart from leading to my ASD diagnosis, it didn't help me at all.

  • I don't like the phrase 'resistant to therapy'. It can make it sound like you're doing something deliberate, when really it means the therapy doesn't help, and you're not going along with any witch-doctor effect that it does. On the other hand, at least they referred you (I had to fight for a referral). I think assessment usually takes two sessions, and then maybe a feedback session.

    I had about the same reaction - half the people people close to me had apparently thought I 'had Asperger syndrome' without telling me. Some thought it unlikely when I first mooted it, then came around. It also depends on what stereotype they have of AS/autism.

  • Hi qwerty, I was diagnosed as 'High Functioning ASD' last year at the age of 56. I had been suffering from severe depression for several years & was referred for an assessment by my psychotherapist, who noticed that my thought patterns were unusually rigid & resistant to therapy.

    The diagnosis required two sessions spaced several months apart (due to NHS waiting lists), but I attended both of them alone. The first session seemed to concentrate on the more overt symptoms & because I have always been quite good at passing for 'normal' (whatever that is), I was told a second session was required.

    The initial forms I filled in before the first session asked questions about my early family life, but they didn't need to contact my parents directly (both of whom are still alive & enjoying retirement), or my brother & sister.

    I found both assessment sessions quite pleasant & wasn't that surprised when I was told I has a positive diagnosis at the end of the second one. Funnily enough though, around half of my friends/family weren't surprised either, whilst the others thought it must be a mistake. I suppose it all depends on how good other people are at seeing through my social mask ;-)

    Hope this helps

  • Well not sure where my reply went? I quoted Otis and tapped in my reply only for it to vanish when I tried to send it,

    my lengthy response was to say( in short now) having been through such a difficult life it makes us stronger and very much more understanding and aware of others. 

    I recently met a gent selling his old glasses! They were prescription ones for him, but were for his dyslexia,,apparently had a prism lens which stopped the letters dancing around in the page...we discussed dyslexia as I too have it, we agreed at the end of our talk that it had made us better people because of the struggles.

    You and him and many on here are what I call “ Eyes wide open people. “ meaning we see the world and are awake to everything around us, many so called normal people are fixed and blind to life in general. 

    X()x

  • I may not have fulfilled my dreams desires or have friends, a partner or even an occupation. But, when I look at it I have something so original and priceless and that is a life, my life.
  • It's very nice to hear that you are making such a positive impact on your life. Wish you all the best!

  • I appreciate your very detailed reply and for sharing your experiences. Thanks.

  • Thanks to both your replies. It's encouraging to know that it is possible to get a diagnosis attending the assessment alone.

  • Hi there, my experience of being diagnosed with autism at the age of 15 came as a surprise to say the least. Before the diagnosis, I struggled in education both primary and secondary school. I got the verbal abuse, threats, name-calling, explicit/sexist comments...

    My Mum knew, from when I was in nursery something wasn't quite right. But, she and many others had to endure through the trials and tribulations, sleepless nights, heartache, upsetting scenes. The situation got so bad I didn't see any hope let alone a future. During meal times, I would hide in the boys restroom, or isolate myself from being with others. When, I got home, stay in my room, close all blinds, curtains, doors and windows.

    I didn't have a quality of life or self-worth. I didn't value or appreciate myself or life in general. I was crying out for help and felt like there was no way out.

    Leading up to the assessments, psychologist, psychiatrist, speech and language therapist, going to various hospitals or services, backtrack all documentation of education, family, personal life, answer questions, or act out scenario etc. At the time, use of other services such as Together (being one of them)

    It was a long process but looking back now I am free of the hurt, pain, suffering, anger, upset. Ultimately, no more drama. Now, I can live he life I choose to not by somebody else's preferences or command. I am my own person and I want to embrace and own that in every opportunity.

    I did go to College to study for various courses, attended workshops on my preferred field. Saying that, I tried to engage with others but I haven't yet formed a close friendship or relationship as such. But, I am working on things like that and more each day gradually. I even had a work placement with an organisation that specialises with working with both young children and adults with autism. Plus, went to volunteer for a service with elderly people at a day time club.

    Looking back now, although I wouldn't wish have the bad experiences upon anyone (including my worst enemy) it did make me stronger mentally as a person (a human being). I may not have fulfilled my dreams desires or have friends, a partner or even an occupation. But, when I look at it I have something so original and priceless and that is a life, my life. It may not perfect but I am working on each area of my life in a slow, but steady pace which I am comfortable with. 

  • Hi qwerty,

    My mother was my obvious and only choice.  She was quite elderly at the time - 3 years ago - and not very mobile.  Also, it was a long journey to the assessment centre and I didn't want to put her under any unnecessary stress.  I rang the centre, and they informed me - as you have also been told - that they may not be able to reach a definite conclusion without that kind of input.  In the end, mum came (and it was, in fact, a nice day out for her!).  But my own testimony was really enough for the psychologist, I think.  It was noted that I couldn't make eye contact, that I was over-detailed in my answers, etc.  She also had access to my medical notes, and my history of mental health problems, suicide attempts and substance misuse - things of which mum knew either very little or nothing.  I could also give her more details about these in my own answers.  Mum was interviewed for about 20 minutes - mainly about whether there had been any difficulties with the pregnancy, and about my developmental milestones.  From my report, it looks as though she said things were pretty much normal - though she mentioned how I was a 'Jekyll and Hyde': quiet and shy at school (actually, it was a very stressful place for me, and I was fearful of the teachers and my fellow pupils) and disruptive at home.  That seems to be quite a common experience.

    Are you sure about your parents?  How well do they understand the condition?  Do they accept the stigma and stereotyping, or are they perhaps more open-minded than you might think?  Try having a chat with them - perhaps in a relaxed setting, where they can give you their focus and you won't be disturbed.  Be honest with them about how the condition affects you, and maybe try indicating how a diagnosis would benefit you and give you relief.  There's huge amounts of positive information out there, too, that you could show them.  Information on this site and others, positive role models, etc.  If they refuse, it's still not necessarily the end of the world.  As I found with my own interview, it's really my own testimony that was the most important.

    Good luck.

    Tom

  • Yes, me too. Well, actually both my parents are dead. The assessors might also be interested in things like school reports. I could have taken an older sibling if I'd wanted, but it wasn't an issue.

    I gave my own honest history, and they were happy with that. Even though I presented my past as explicable or 'normal' based on what I'd experienced, I still got a positive diagnosis, which was a bit of a surprise.

    I think of 'differences' instead of 'symptoms'.

  • I went to my assessment alone and answered the questions relating to my childhood myself which seemed perfectly acceptable to the assessors. Because I could not remember before the age of school much, they weren't able to score me on the section relating to childhood regression but I still easily scored enough on every other area for a diagnosis of Asperger's Syndrome.