Published on 12, July, 2020
Hello, I’m 21 and female! I’ve been to my doctors and they’ve referred me to a specialist to get assessed for autism. When people first meet me they say ‘there’s nothing wrong with me’ or ‘I look normal’. I’m very aware that I’m different and have been aware of this since I can remember! The reason I’ve only just gone to the doctors is because I have a very supportive boyfriend who has helped me lot and I was too scared to go before. I want to know the details of what happens from the very beginning of the assessment right up to the very end! I’m scared they will either misdiagnose me or say I’m not autistic! Which I understand might seem like a good thing to some people but when you’ve been struggling your whole life you feel like you just want the answers! And im certain and so are others that I’m autistic! Thank you for reading!
Mine (South West) was a private assessment. I was able to self refer, and the whole process was very quick (1 month from referral to assessment, verbal diagnosis on the day, final report 1 month later).
My self referral form consisted of a short questionnaire (the 10 point one) and I was asked to write a short paragraph about the difficulties I had ( I actually ended up writing 2 pages!). Then I had a more detailed form sent asking my medical history, education. job history etc sent to fill in. This asked for details of a family member they could contact to discuss my childhood but I declined (and this did not turn out to be a problem). Also 2 questionnaires to fill in beforehand (the AQ and EQ I think) and a further 2 sent to me to bring to the appointment (RAADS and SQ).
I then had 1 single appointment lasting 4 hours with one psychologist which I thought I would find really hard as I struggle to talk about myself, but she was really lovely and it went well. During it I had to do a "tell the emotion from the picture of the face" test, we talked a lot about every aspect of my life, and I received a verbal diagnosis of Asperger's (my region still uses this label) at the end. I was given some info booklets etc to take, and a letter I could show to my employer if I wished (I did).
The full report was emailed to me a month later to check I was happy with it, and with my consent was sent to my GP (although I didn't have to go through him to refer I had discussed it with him). It was an incredibly comprehensive summary of the conversation I had had with the psychologist and also detailed my scores on the various questionnaires. It confirmed the diagnosis of Asperger's and specified that this was also considered a diagnosis of Autistic Spectrum Disorder (under the various classification systems)
All in all I found the process much easier than I thought, and was very glad I did it. I do realize that I am fortunate in that I could go private as otherwise the NHS waiting list in my area is up to 2 years.
In the few weeks I've been on this forum I have found it very useful and helpful. It does amaze me though how the assessment process does seem to differ so much by region.
I am almost at the end of my assessment. Just waiting for the results. I did it privately but went to the same place that I would have been referred to if I had gone to my GP. Mine started with an initial assessment meeting which included the Autism Quotient questionnaire. Following that I had a letter saying I should have a full assessment. This involved a cognitive assessment, an ADIR interview with my Mum, a sensory profile and then an ADOS assessment. Each one was carried out on a different day and by a different person. They then have a meeting together to discuss whether to give me a diagnosis. I have a results meeting next week to find out. Like Trogluddite I have actually enjoyed the assessment procedure. Right from the start I felt I was talking to people who understood me. They obviously have good knowledge of how autism presents in females and have done a thorough job of assessing me. This is in Worcestershire by the way.
I get called out by people all the time for 'looking normal' even people who suffer from it themselves,.
Thanks - that's really valuable (definitely for me and, hopefully, for KizzieBing).
I could only describe what might happen, it's much more helpful for feedback from someone who has gone through it and where it has been such a satisfying experience.
Like you it took me years to go from strongly suspecting (in 2008) to asking the doctor earlier this year, when I'd wound myself up so badly I was barely able to talk during the appointment. So, yes, the worst is over - I'm still nervous about what's about to come up over the next months but it's become a lot easier using this forum for feedback and knowing how others face the trials and tribulations!
My assessment a few years ago (also in West Yorkshire) followed exactly the pattern that Andy has posted, using the Adult Aspergers Assessment (the "first option" which Andy mentioned.) Most of it was conducted by a psychologist, and I also saw an Occupational Therapist briefly. My Mum provided information about my childhood by completing a Relatives Questionnaire. I didn't take anyone with me into the interviews, but you will be allowed to if you want to.
However, it's only fair to warn you that the NICE guidelines are quite flexible, and I know from talking to other people that the way that assessments are done can vary a lot from place to place. However, once my referral was accepted by the autism unit, they did do a good job of letting me know what to expect and who they would be in contact with (and how long I might have to wait! - thankfully only a couple of months, but it can be much longer in some places.)
Like you are, I was worried about whether my difficulties would be spotted after years of doctors and counsellors missing them and me trying to deliberately hide them. I needn't have worried; I was astounded at how much they were able to work out about me without me even suspecting what they were trying to look for. Just be completely honest, and don't try to second guess what answers the tests are looking for; they are designed to find things out in a roundabout kind of way on purpose!
In my experience, you have already got through the toughest hurdle. It took me years to get a GP to take me seriously and make a referral, even after counsellors had pointed out their suspicions; and that isn't unusual. I found it got a lot easier once I was in the hands of experts who understood my condition; it doesn't just mean that they're better at diagnosing, they're also better at treating autistic people kindly!
In all honesty, I actually enjoyed my assessment; it was refreshing to talk about my experience to someone with the training to understand what I was saying, after years of being fobbed off; and it gave me a much clearer picture of how my abilities compare to the people around me.
Best of luck!
Thank you!
That was very helpful and very detailed I will take a look at everything, hopefully it will calm my anxiety about everything!
Hi KizzieBing
I've just started the route having been referred at the start of May - and I've just completed the initial screening questionnaires. The important ones relevant to Autism are (in my case located in West Yorkshire)...
I'd actually done these earlier in the year as they are readily available for download.
From this point there will be an initial screening appointment followed by (usually) 3 more for assessment. The assessment will be carried out by a wide team and could include any of the following (usually one at a time)....
Following a positive diagnosis there could be 2 more appointments to discuss support and impact/implications
The assessment will be carried out according to the NICE Clinical Guidelines - see sections 1.2.3 and 1.2.8 which cover the main assessment methodologies.
It looks like I'm going along the first route listed in 1.2.8 but there are 5 others (such as ADOS, RAADS, etc.) and, hopefully, members can contribute to describe their experience to give you a better idea.