Published on 12, July, 2020
I am very concerned, as I am sure that many other people affected by autism will be, of changes to adult social care that are being put forward by Government. Recently I attended a protest outside County Council, protesting against a proposal to take away support from disabled adults who are deemed to have moderate needs. I have been classed as having substantial needs, but with some moderate elements, and I am very worried by these changes. I am aware that many councils already restrict support to those with substantial or critical needs, but this does not make it right to limit support in this way. Autism, and asperger's in particular, is a very complex disability and its presentation can often be subtle, hiding a very significant disability that can only be fully appreciated after someone has really got to know the individual concerned. Moreover, people with autism can have good days and bad days. THey may be 'moderate' part of the time, but if they experience any stress their condition can deteriorate to such an extent that they become critical in a very short space of time.
I do not believe that these changes have been fully thought through. THe changes will not save money. On the contrary, when support is taken away from people it is likely that many will end up in acute psychiatric care, which will be totally unnecessary as preventative care in the community would prevent the need for this, at far less expense.
I have a fantastic support package which has enabled me to undertake voluntary work and to be active in the community. Support helps me to live an independent and fulfilling life. I have no friends and no social network; without support I would be isolated. I dread to think what would happen if my support was decreased or even taken away. I need routine and security in life in order to function. The support has provided me with a safe security blanket from which I can test the waters and take a few independent risks. I volunteer at several places completely on my own because I know that I see a support worker at regular intervals who can provide me with reassurance. Support for me is a great enabler: it makes me more independent and provides me with a sense of control and structure.
I would love to hear from other people about the support they receive, and whether or not they are concerned by the proposed changes
Hope has identified a good indicator that assessors may not be able to grasp and that is that, even having developed good strategies for formal communication, after a while you get tired.
I'm often accused of showing I'm bored with company, when in fact I'm simply finding it progressively harder because I'm having to work at it.
The irony is it also gets me identified as "a good listener" which is a source of frequent embarrassment. I have to concentrate really hard, as one of the problems I have in conversation is fading out, possibly because I'm getting tired, and I have to read between the lines to pick up the thread. I can feel my eyes going as if overtired. However other people perceive this as me being attentive and listening to them, and don't seem to notice me lose the thread as much as I do. Or maybe I've become good at bluffing.
It means too that being seen as a good listener I get people coming to me to tell me their woes*, and as I'm not good at finding a way of extricating myself, I end up stuck in that mode. (I include the * asterisk as that doesn't mean I don't bore people with my woes).
The reason I mention this however is that I've found it happens to other people on the spectrum and read about it happening to others. It shows how difficult it might be for a GP or clinician to spot that someone has AS traits, as it takes time to manifest difficulty.