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
I've just read the document prepared for health services and local authorities, and yes it does address GPs but only in the sense of support for people receiving mental health treatment. I've emailed back to ask (as I did at the consultation stage) how the proposals will help people who are normally self-sufficient and not accessing mental health care.
When I got my diagnosis I found out that my GP had said in the letter reluctantly suggesting I was seen by somebody that he thought autism was something children grow out of and thought I was being stupid asking for a diagnosis as an adult. Several years later I asked if he had a record of my diagnosis and he just laughed and said Aspergers, is that a new kind of vegetable?
I'm afraid nothing is been done anywhere to persuade GPs to behave responsibly on this one. Because the individual traits may not appear to amount to much of medical concern, GPs seem blissfully and conveniently unaware of the collective effects of these traits, they treat anyone presenting with able autism as a malingerer.
It needs a campaign directed at GPs to resolve this. Can NAS take this up?
The notion that you can assess how autism affects someone in the five minutes GPs usually afford their patients is ludicrous. But there seems little one can do to fight blatent and unprofessional ignorance.
Any GPs reading this may feel inclined to disagree, but in at least some parts of the country GPs are clearly not taking adult autism seriously.