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
AS is often misunderstood and this causes all sorts of problems. I was told by my employment adviser, who I see at the mental health team, that I seem very confident and friendly, with a nice smile. Based on this observation, she thinks that I would be very good in a receptionist role, dealing with the public!. There is simply no way that I could work with the public from 8am to 6pm, the time the job she has in question, at a busy dental surgery, would require. The best job for me would be office based, with very low intensity social contact. I have obviously failed to adequately explain to the specialist, who I have only met once, for a 1 hour consultation, that I may come across as bubbly and self-assured when I am in a formal one to one situation, but this is only a self-taught coping mechanism. As soon as I am out of my comfort zone, my stress and anxiety reach fever pitch and I enter fight or flight mode.
The longest I can deal with the public, before I need a long break, is about 1 hour, and this is only if I have someone supervising me. For example, I work the till at Oxfam for one hour every week, but I have a support worker who accompanies me. By the time the hour is up, I feel tired out, because even this level of social contact with the public is mentally gruelling, although nonetheless rewarding.