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
Hi David,
Wasn't sure if you were addressing your opening question to me or one of the earlier respondents. I was diagnosed six years ago by the county assessment centre for AS where I live. However I'm very lucky that I seem to manage pretty well although informal social situation can be dire and I experience a lot of misunderstandings.
You were probably very lucky, from what I can gather, not being sent to special school in 1966. Understanding of autism doesn't seem to have been helpful and might have taken you out of the education loop or entailed inappropriate drug regimes, but this seems to have varied around the country. I avoided interventions because my parents wouldn't truck any interference; from what I can gather that was just as well; the problem first raised its head when I was about 8, which was in 1958.
GP appointments systems get worse and worse despite government claims. Mine, whatever your circumstances, is either phone up on the day for a wait and see if you get seen basis, or two or three weeks for a proper appointment. Its a lottery whether you get through on the phone. So I think that's a fairly universal experience.
The issue I was raising was the attitude of GPs even if you are diagnosed as on the autistic spectrum. Given my experiences and what I've heard from others, I cannot imagine what happens to people who just think they are autistic because having a diagnosis doesn't seem to make any odds with GPs, who are only interested if you have major textbook symtoms. If you can manage it seems, there's no problem.
I was also on about the assumption, which other respondents were reporting, that yoyu could spot autism within a five minute appointment, and one of the correspondents was reporting being told that they didn't look like someone with aspergers. I've heard this reported before.