Published on 12, July, 2020
After months of waiting, I have finally been invited to a discussion of the outcome of my assessment in a couple of weeks time. I have heard mixed reports of what to expect. Some people seem to just get a very brief diagnosis, others a multi page document and other resources/signposting. So I don't know how to prepare. I feel desperate, though, and need to get as much out of this appointment as possible. Obviously I'm hoping I've got a team that does a full report and highlights local and national resources for me, as well as considering what I think is a really important issue (and indeed the one which drove me towards seeking a formal assessment) - autism as a family issue.
There have been so many issues within my family over the years and these have become quite desperate in the cases of both of my sons. Neither will consider going for an assessment themselves so it's a vexed issue, but in order to seek appropriate help, I feel I need to know what's going on in my family. My own diagnosis will, I think, give me some indication even though I appreciate this would be more of a balance of likelihoods/working hypothesis.
If I don't get diagnosed I'll feel I've drawn a blank and won't know what to do. However, with the end of the diagnostic process, I will be discharged from the Autism Team and also the local Affective Disorders Team (lovely title!) which oversees this service. So i'll have nothing.
I'm quite afraid of what might happen next. What questions and expectations should I take to this last appointment?
As you say, it's hard to predict what the discussion will involve, but my hunch is that the fact you've had to wait a while between assessment and results is a good sign.
In terms of questions to ask, what I suggest is to try to think of problems that you face that you're unsure are autism related or not. For me, this was trying to determine which of my behaviours were autistic, and which were caused by mental health problems; asking about these settled much of my confusion about how to read my anxiety and depressive behaviours. In your case, you might want to highlight behaviours that have been noted in you, and which you also recognise in your sons.
In terms of expectations, I would advise you to try not to get your hopes up too high. I know that sounds a bit negative, but there are good reasons for this. Firstly, if you look at the formal diagnostic criteria for autism, you'll see that there isn't actually all that much there; they don't mention melt-downs or shut-downs, they don't mention burning out, they don't mention masking, they don't mention sensory sensitivities, and so on. The assessment is primarily to determine your diagnosis, so will inevitably concentrate on these formal diagnostic criteria; even if you get a very detailed breakdown of how your diagnosis was arrived at, there will still be huge areas which may not be covered. Secondly, the difficulties of autism are mostly consequences of how we interact with the world around us, and the assessor can't possibly have enough knowledge about your environment and the people around you to predict what most of those consequences might be. This, of course, is where wonderful resources like this forum come in; other autistic people's experiences of actually living an autistic life every day are far more useful to learn these things from than the clinical knowledge of a professional.
Signposting to support services will depend mostly on what is actually out there locally. As most support services are not part of the NHS, the autism team might not be even be aware of everything that's available and probably have little contact with local authority run services. Your local Citizens Advice Bureau or a branch of NAS or mental health charity Mind are probably better sources for this information, and just as importantly, may be able to help you with applying for things.
One other tip. Give it a couple of weeks for them to finish their paperwork after the meeting, then check with your GP that your results have been added to your medical records; my GP had to chase this for me after it had got missed for some reason!
Best wishes; I hope the meeting goes well for you.
Many thanks. Yes, they have been very thorough to date, although I suspect much of the wait is to do with underfunding rather than their attention to detail.
For myself I do indeed have lots of issues that could be autism-related, mostly revolving around high anxiety and inability to function as others do in a workplace environment. Difficulties socialising without alcohol have also been a factor. But we'll see. The truth is that I am mainly looking for some understanding of family-wide issues and that, without these, I would probably never have sought a diagnosis. So I might be at odds with the system in that they obviously diagnose and advise on an individual basis whereas I see my struggles as being firmly placed within an overall family pattern. For this reason I've not just faced personal struggles, but have also struggled with some quite severe problems in my late father and now my sons - our issues have been strongly inter-related and have become compounded within the family, making us very isolated and markedly "different". So I'll be asking about this but don't really expect to get very far.
I'll certainly be back here too. Not really posting much atm because I feel I need corroboration of what I suspect to be the truth about my family. What I'll do if I've drawn a blank and I don't get a diagnosis is another matter. Clearly there's something familial going on, but putting a name to it might then prove extremely problematic.