Officially on the Spectrum
Sep. 13th, 2012 04:21 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
quarridorsI spent this morning at Highbury Hospital where two specialists spent four and a half hours giving me intensive diagnostic assessments. This was following a detailed screening interview with a different specialist in June.
I was worried that the results would be ambiguous and there'd be weeks more to wait before I got an answer (as this delay is apparently quite common), but thankfully both the specialists thought my traits were clear enough that they could happily give me a definitive, conclusive and unambiguous diagnosis of Asperger's Syndrome (a type of 'high functioning' autism).
I've known that I very probably have autistic spectrum traits since the mid 2000s (before then I knew I struggled with certain things but wasn't aware how unsuccessful some of my coping mechanisms were) but I hadn't really accepted that it could be Asperger's until the last year or two as I'd gradually learned about more than just the commonly portrayed stereotypes; particularly extrovert aspies, aspie stand up comedians and articles about how women and people socialised as girls tend to present. I also read in the WPATH Standards of Care that young transitioning (childhood and teens) trans people are significantly more likely to be on the Autistic Spectrum.
I have to say this it's an incredible relief to no longer have to second guess myself. I'm not very good at trusting self-diagnosis but I had been having a lot of success living my life with the working hypothesis that I was on the spectrum (and previously that I had NVLD). Despite those successes I've been extremely obsessively self-doubting at times and felt like my life has been essentially 'on hold' since I asked my GP for a referral for an assessment in April. So this clear diagnosis was extremely welcome and happy news.
The assessment was a pretty stressful situation, and much of it wasn't at all like I'd expected, but thankfully Kim (a close friend for 13 years) was allowed to sit in for the whole thing and was a big part in making me feel relaxed and comfortable and preventing me from obsessively second guessing about whether I'd said the right thing and not misrepresented myself. (Apparently when I was going to the loo they asked her if I was always like this, and she said that other than not usually being this nervous this was pretty typical!) I'm extremely grateful that she did this to support me and stuck around for as long after as she could without missing her own hospital appointment.
The next step is that I'll get a detailed report outlining the findings of the assessment (this will take a number of weeks but I'll have constant email contact with the Service while I'm waiting - in fact they've already sent me a little summary of what comes next). This report is also intended to demonstrate to the PCT why I should be funded for continuing to see the Nottingham City Asperger Service and using their services, so will be sent to my GP. However I get an electronic copy first and can correct or amend things I feel are incorrect before it's printed and added to my medical records.
After that I get a Post Diagnostic Support appointment to discuss what the diagnosis means to me and how the service can now best support me in working with my strengths and around my weaknesses. Then I'll have access to the multi-disciplinary Asperger Team that includes Asperger specialists who are also an Occupational Therapist, a Speech and Language Therapist, Psychologists and a Psychiatrist. They can also refer me on to other types of counseling and therapy with specialists who understand Asperger's and the autistic spectrum.
I'm extremely lucky to live in one of the parts of the country where the NHS provides such top notch Asperger/HFA assessment and support, because this is by no means the norm. I understand that there's only a handful of cities that do this, including Bristol, Liverpool and Norwich, but that the NHS is committed to introducing Autistic Spectrum Teams ('Asperger' is actually on the way out and we'll all just be Autistic Spectrum soon) following this model across the country.
I already announced this news on Twitter and got some positive reactions from other people on the autistic spectrum and some very tentative reactions from others, so I just want to be clear that this is a hugely positive thing for me. I've been obsessed with understanding what was different about me for twenty years, since my first year of secondary school, so it's wonderful to finally know for certain that this is the answer!
I was worried that the results would be ambiguous and there'd be weeks more to wait before I got an answer (as this delay is apparently quite common), but thankfully both the specialists thought my traits were clear enough that they could happily give me a definitive, conclusive and unambiguous diagnosis of Asperger's Syndrome (a type of 'high functioning' autism).
I've known that I very probably have autistic spectrum traits since the mid 2000s (before then I knew I struggled with certain things but wasn't aware how unsuccessful some of my coping mechanisms were) but I hadn't really accepted that it could be Asperger's until the last year or two as I'd gradually learned about more than just the commonly portrayed stereotypes; particularly extrovert aspies, aspie stand up comedians and articles about how women and people socialised as girls tend to present. I also read in the WPATH Standards of Care that young transitioning (childhood and teens) trans people are significantly more likely to be on the Autistic Spectrum.
I have to say this it's an incredible relief to no longer have to second guess myself. I'm not very good at trusting self-diagnosis but I had been having a lot of success living my life with the working hypothesis that I was on the spectrum (and previously that I had NVLD). Despite those successes I've been extremely obsessively self-doubting at times and felt like my life has been essentially 'on hold' since I asked my GP for a referral for an assessment in April. So this clear diagnosis was extremely welcome and happy news.
The assessment was a pretty stressful situation, and much of it wasn't at all like I'd expected, but thankfully Kim (a close friend for 13 years) was allowed to sit in for the whole thing and was a big part in making me feel relaxed and comfortable and preventing me from obsessively second guessing about whether I'd said the right thing and not misrepresented myself. (Apparently when I was going to the loo they asked her if I was always like this, and she said that other than not usually being this nervous this was pretty typical!) I'm extremely grateful that she did this to support me and stuck around for as long after as she could without missing her own hospital appointment.
The next step is that I'll get a detailed report outlining the findings of the assessment (this will take a number of weeks but I'll have constant email contact with the Service while I'm waiting - in fact they've already sent me a little summary of what comes next). This report is also intended to demonstrate to the PCT why I should be funded for continuing to see the Nottingham City Asperger Service and using their services, so will be sent to my GP. However I get an electronic copy first and can correct or amend things I feel are incorrect before it's printed and added to my medical records.
After that I get a Post Diagnostic Support appointment to discuss what the diagnosis means to me and how the service can now best support me in working with my strengths and around my weaknesses. Then I'll have access to the multi-disciplinary Asperger Team that includes Asperger specialists who are also an Occupational Therapist, a Speech and Language Therapist, Psychologists and a Psychiatrist. They can also refer me on to other types of counseling and therapy with specialists who understand Asperger's and the autistic spectrum.
I'm extremely lucky to live in one of the parts of the country where the NHS provides such top notch Asperger/HFA assessment and support, because this is by no means the norm. I understand that there's only a handful of cities that do this, including Bristol, Liverpool and Norwich, but that the NHS is committed to introducing Autistic Spectrum Teams ('Asperger' is actually on the way out and we'll all just be Autistic Spectrum soon) following this model across the country.
I already announced this news on Twitter and got some positive reactions from other people on the autistic spectrum and some very tentative reactions from others, so I just want to be clear that this is a hugely positive thing for me. I've been obsessed with understanding what was different about me for twenty years, since my first year of secondary school, so it's wonderful to finally know for certain that this is the answer!
no subject
Date: 2012-09-13 06:34 pm (UTC)no subject
Date: 2012-09-13 07:25 pm (UTC)no subject
Date: 2012-09-14 12:13 am (UTC)