more on adult asd services

Please note that some of what I write in the first half - especially for instance describing the role of statutory bodies - is copied from the relevant websites. In all cases there will be a link elsewhere in the text, usually earlier, to the pages where the copied phrase can be found.

A few weeks back I posted about the lack of adult ASD (autism spectrum disorder) services in Manchester. This followed me approaching my GP for a referral for a diagnostic appointment. Around the same time I went back to the National Autistic Society (NAS) website to ask questions about possible next steps, and to check out the forum for others' similar experiences. The consensus appeared to be that I should try again.

The main basis for this is that the autism strategy says that local authorities in England must have a clear pathway of diagnosis for adults, meaning that adults should be able to have a diagnostic assessment, and their GP or local authority should be able to tell  them how they can get this assessment. This is echoed by the NICE clinical guidance on autism.

The autism strategy is the government's plan to ensure that adults with autism get the help that they need. The government's statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy identifies what these bodies are under a duty to do under legislation, what they are expected to do under existing guidance, and what they should do under the new guidance.

NICE, the National Institute for Health and Care Excellence, provides guidance and advice to providers of health and social care in the UK. The clinical guidance on autism covers the care provided by all health and social care professionals who have contact with, and make decisions concerning the care of adults with autism.

So Thursday last week (10 September), after a little more than five weeks after my first visit, I went back to my GP for a second appointment. This time I concentrated on my social deficits, how long I have experienced them, what impact they've had on my mental health and may continue to have, as well as quoting the autism strategy, and making it clear that I would just continue coming back. And I finally made some progress. My GP will write to Central Manchester CCG (clinical commissioning group) to try and secure funding to send me out of area for an assessment.

This is still far from a done deal. The decision-making process to secure funding may take weeks, and there is a very strong chance that funding won't be made available, so I do need to research what other options might be available. Even if the funding is made available, and even if the eventual assessment identifies a need for support there is still the problem that there are no adult ASD services in Manchester. I haven't yet looked into whether similar arrangements to those for diagnosis are in place for support. That is, whether there is funding available for buying-in services from elsewhere.

Among those other options for diagnosis I mentioned earlier, a private diagnosis isn't really feasible as I simply can't afford it, and in the event that I were to receive a diagnosis that way a lot of areas won't accept a private diagnosis for access to support services. I'm not sure that leaves many alternatives to be honest.

I'm not certain which diagnostic service my GP has in mind, though I suspect it's Trafford Extended Service, which is part of Greater Manchester West Mental Health NHS. My reasoning is that I visited both Manchester City Council and Mental Health In Manchester's (MHIM*) websites, and sent a message to the latter asking about the situation regarding adult ASD services in light of the autism strategy. I received a couple of quick replies, one stating that they would review their information and create a new entry on the subject, and another from Central Manchester CCG.

The reply from Manchester CCG gave me a two forms to be completed by my GP and myself, one covering a broad range of personal and mental health questions relevant to an assessment for ASD, and the other AQ10, a brief set of questions which can identify potential autistic traits. I was advised to take this along to my GP for completion. Since my GP had already undertaken to write to their CCG for funding as previously mentioned, I wasn't clear if this related to the same thing.

I wrote back, asking whether the service referred to by the CCG was likely to be the same service my GP had in mind, and was advised that funding is only available for diagnostic services through Trafford Extended Service. Applications for funding from any other service will not even be considered. That indicates to me that this is most likely the service my GP will approach their CCG about.

The AQ10 which I mentioned above is an abbreviated version of the autism spectrum quotient (AQ) devised by the autism research centre, which can indicate the presence of autistic traits. My score on the full AQ generally comes out around 32, which is at the lower end, but can indicates some autistic traits.

I am therefore a little further on than I was six weeks ago, but only after two appointments and being as persuasive as I could manage.

To be honest, the whole situation is unsatisfactory. There is a clear requirement of the autism strategy, and clear guidelines from NICE, and yet Manchester does not have any adult ASD services. Worse, my experience of trying to secure a diagnostic appointment has been one of GPs who were not only extremely reluctant to pursue it, but seemed to be actively trying to dissuade me from seeking a diagnosis.

Since I have a long history of anxiety and depression, which I suspect my social deficits have contributed to; and since my problems socialising, and forming and maintaining social bonds have been my main focus of concern when in contact with mental health services in 1999, 2006/7 and 2012/13, there is clearly something there which needs addressing. Personally, while my mood has been fine this year despite a lot of major changes, it seems like sensible self-care, and the responsible thing to do to address a potential contributory factor in my problems socialising.

For others who might be less articulate, knowledgeable or tenacious than me, or perhaps even more so but currently less willing to fight because of depression or other reasons, the obstacles might be impossible to overcome. And again, it will take weeks for a decision to be made, and the money may not be forthcoming. For the time-being I'm assuming that there is no funding and that I won't be sent for diagnosis.



*MHIM appears to be a collaboration between Manchester City Council and Manchester Mental Health and Social Care Trust.

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