Since I posted 'Waiting for Autism' three significant things have happened that prompt me to write again. Firstly, I have had wonderful, warm and supportive feedback from many people, for which I want to express my extreme gratitude. But, secondly and thirdly, I have entered into the next stage of the process of receiving a diagnosis (or not), and I have been asked on more than one occasion what the process so far has consisted in. I thought it might, therefore, be worth providing a nuts and bolts account of my experiences so far in case it may help others.
Crucially, it must be remembered that these are experiences that speak to the UK context, and, in particular, an engagement with the NHS in Oxford. As most people in the UK know, the speed with which one can access NHS services can vary considerably with location; and my sense is that Oxford is better served in this regard than many other places.
I briefly mentioned the first stage of my diagnostic journey in my previous post, namely a conversation with my GP. An old friend who talked to me after reading the post was keen to know how I even got that far. What did I say when the person on reception picked up the phone? The answer is pretty simple. I said I wanted to make an appointment to see a doctor; they asked why; I said I wanted to discuss the possibility of obtaining an autism diagnosis. I was a little surprised to be told I would receive a call back the same day, and still suspect that may be because I already have a bipolar disorder diagnosis. However, my conversations with a small sample of others who have actually been diagnosed with autism suggests that requesting an appointment to discuss the issue with a GP is no different than requesting any other kind of appointment.
So what did the GP do? We began with a brief discussion of why I was interested in pursuing the possibility of a diagnosis. I told them about the main events that I discussed in 'Waiting for autism' and also mentioned that I had worked through one of the online screening tests, which consists of 30 questions, and on which I had scored quite highly. I don't remember the details of what they said, but they clearly thought my request was reasonable. We then went through a ten question NHS screening test, which was very similar to the one I had done online. It consisted of a series of statements with which I had to 'definitely agree', 'slightly agree', 'slightly disagree', or 'definitely disagree'. It broached issues such as whether one can read people's emotions by looking at their faces, whether one notices small sounds more than others etc. The appointment ended with the doctor telling me they would refer me. However, they also asked that I send a list of things that had led me to think I might be autistic which they would send along with the referral.
Within a few days I received an email from Autism at Kingwood, the Oxfordshire Adult Autism Diagnostic and Support Service. Whilst this site is devoted to a local organisation, it is worth noting that it contains lots of useful information about adult autism diagnosis. This email contained 6 forms that needed to be fill in and returned. It is on the basis of my responses on these forms that it will be decided whether I satisfy the criteria for a full-blown diagnostic evaluation. The forms were as follows:
1. A form on which I was required to enter various personal details of a standard kind: name, date of birth, next of kin, related medical history etc. There was also a section on this form with the heading 'What makes you think you may have autism?' and another with the heading 'What do you hope will be different by having a referral and a diagnosis?'
This form also contained questions that were to be filled in by a supporter if help was being given by a supporter during the process.
2. The Autism Spectrum Quotient, which turned out to the form that my GP had used in our initial conversation.
3. The Adult Autism Spectrum Quotient , which is a 50 question form that follows the format of the Autism Spectrum Quotient; indeed, some of the questions reappear.
4. The Adult Empathy Quotient, which is a 60 question form of the same kind but more focussed on the way in which one relates to and interprets other people.
5. The RAADS-14 Screen, which is a 14 question form with similar questions to the Adult Autism Spectrum Quotient, but which asks one to say of each statement whether it was 'true now and when I was young', 'true only now', true only when I was younger than 16' and 'never true'
6 The RQ form which is to be filled in by someone who knew you as a child. It consists of 37 questions about various aspects of your behaviour. which track the questions in the other forms. It is stressed that one need not be in a position to fill this form in in order to be screened; and this was something that was not possible in my own case.
It is unclear at this point how long it will take to find out whether I will be invited for a full diagnostic screening. However, I was asked to indicate whether I would prefer to do this in person or by video call, and the form included the information that in either case it would take between 6-12 months for such an appointment.
I find it hard to know what to make of this process. Needless to say, it was quite opaque - though I thought I was able to tell what the 'right' answer to at least some of the questions might have been. But, whilst the process remained opaque, I feel content with it, given the number of questions and the fact I had an opportunity to explain in my own words (something which could have been done by a supporter as well, or instead of me) why I was seeking a diagnosis.
As for the rest; my feelings about the process remain much as I expressed them in my previous post. I remain unsure what to expect in terms of the results and unsure what to expect of myself and others whatever the results turn out to be. But, as of yet, I have no regrets. However, one part of the process so far helped me gain a little more clarity, namely the request for information about what I hoped to get out of seeking a diagnosis. My answer was threefold:
1) It would legitimize my using resources of various kinds that are aimed at helping autistic people to live with others and in the world more easily and happily; 2) it would offer opportunities to socialise with others who have the same diagnosis and gain a sense of solidarity and support; 3) it would clarify my position in connection with disability legislation at work and help me understand what kind of reasonable adjustments might be made in light of the social difficulties that I often have.