How we got here
Roughly 7 months ago, we were made aware of the newly formed Adult Autism Assessment team for our health board area by our GP. Now we have had a very mixed (mostly bad) experience with the GP surgery, but this was genuinely useful and much appreciated. So we ended up being given a self referral form, and the contact details of the Adult Autism team.
Guess the question of why. Also the matter of why now.
Well. That would be Covid19 and the response to control it.
During the various lockdowns and other measures, virtually every service switched to either telephone or video calls.
Which have always been problematic for us. Something that we suddenly had to confront, as our usual approach of doing everything in person was then impossible. Stuff got very hard, very quickly.
On top of that, well, our modelling of people was suddenly thrown out of whack. People were behaving differently, understandably, but more importantly unpredictably. Working out what people wanted gat really taxing. Was this person on the path approaching expecting a greeting, for us to give them.extra space, or would they be one of the ones that turned their back to us as we passed???
Most of that was OKish. Everyone was struggling with adaptations. However, our GP surgery were absolutely insistent on extremely rigid procedures. We tried explaining our issues, the way we interact and process, but were met with resolute rigidity. We even went through the whole complaints process, to essentially be brushed off. The eConsult system they use is a nightmare, it could be an example when combined with the appalling website and locked doors, of an example of how to ensure access to healthcare could be restricted to only a subset of people. ( See here for the letter we wrote to them at the time )
We naively thought that being able to articulate what some simple accommodations they could make in order to be accessible would be enough. But we were sadly mistaken.
So we ended up pursuing an autism diagnosis, because essentially it was impossible to get even a GP surgery, people that should understand, to make any effort to help unless you had that external validation that they seemed to require.
Of course, if you are an adult that is into their fifth decade on the orb, and you managed to get through school without being noticed because you were good at exams, you were never likely to be diagnosed.
Indeed, where we live, there was up until very recently, NO adult autism diagnosis facility. So anybody that made it to eighteen, well you were on your own. It was just something, like many other things, you masked and got on with. Sink or swim approach. The kind of one that leaves so many people exhausted because they are forever desperately treading water while maintaining the illusion they are doing OK, because it gets way harder if people notice.
We had tried going through private diagnosis (~£2k), via Scottish Autism’s National Diagnosis & Assessment Service. We filled in all the forms, and were completely open and honest about who and what we are. But essentially we were rejected. The basis of this was that because we were plural, they needed that dealt with first by the NHS before they would look at autism.
The irony that someone from the NHS, via nothing more than telephone calls, was determined to refuse to countenance the fact we were plural, before suggesting Acceptance and Commitment Therapy (ACT) where we would be accepting things that inherently contradicted our lived experience, was not lost on us. Given the untenable position, we had politely declined any further contact.
(This is the same clinician that both refused to talk about gender issues which was what we were actually asking for help with, and went as far as to suggest that maybe we should just be an effeminate man!)
Anyway, we got lucky we guess.
The Adult Autism team was new. They responded extremely promptly to our self referral. They, outlined their limited resources and the fact that we would get triaged when they could. It should be noted, that ever since we started interacting with the NHS, our experience has been one that has been much more difficult than it ever had to be. Basic communication, respect and concern have been wholly lacking.
The Adult Autism Team from the outset, have been the polar opposite. They communicate clearly, lay out what they can/cannot do, and kept us informed as to where we were in the process.
We hid nothing from them, as we are so ridiculously tired of masking who we are and what we have experienced, and were very upfront about our prior experiences. All this they took onboard and then gave us a video triage call. They knew this would be an issue. So they talked through how they could make it work, and we did it with our wife on the call, so she could step in if we got overloaded. Thankfully, she did, and they must have got the information the needed. At the end they assured us they would do an assessment, and that it would be in person so we could manage it properly.
They were also up front that it was a waiting list, that they only had a few hours a week, that it could be 6 months or more and that we should contact them if that time had passed to check on the status. This upfront nature was so refreshing. They emailed confirmation of everything. Brilliant.
Roll on almost 6 months, and we get contact. Or more precisely, our wife does. They rang her because they know that:
- Phone calls unplanned are problematic.
- We do not answer to unknown/hidden numbers.
So not only did they accommodate that, they were at pains to make sure they would email us all the relevant stuff afterwards so we had a written record and were included.
Plus, they were flexible with the duration and number of sessions, so as to not overload us more than they had to.
Even picked up on basics like pronouns etc…
It’s how it should be done all the time.
But, damn, if it isn’t both refreshing and heartening.
They were properly accessible, in a way we have not experienced to date.
So now, we are approaching the first of three sessions, one a week, to undergo the assessment process.
Which is going to be interesting, especially as we are not 100% sure autism is appropriate to us, as we have said to them. But, they have made a space where it is safe for us to explore that, and that is great.
While we could write about why we do/not think autism is entirely appropriate to label us, we will make that a post in it’s own right later…