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,
I agree I don't know what Doctors can do for their autistic patients. The problem is they are currently the gatekeepers (and will be moreso if the Coalition Government gets its health service reforms and everything becomes GP centred).
So you often have to go through your GP to get a referral for a diagnosis, or for new help with depression or other developments of the AS, or to get a referral for social services help. They aren't the only route but they are a significant route.
So I think it is crucial that they properly understand autistic spectrum conditions and their manifestations in adults as well as children.
I think you can sometimes tell very quickly if someone is on the spectrum; at other times there are no signs. Although recently retired as a lecturer I was also a disability coordinator and particularly helped students on the spectrum or helped colleagues to do so, in respect of teaching and assessment. I've seen it manifested in many different ways, and sometimes it is not at all obvious until you've known the student a while.
I think the old adage "it takes one to know one" has a ring of truth here. I do find myself saying I'm sure he's an aspie. However I don't think I look that obvious myself, and certainly I've got very good at covering up late in life, at least in formal situations. Social events and parties though are definitely not a good idea - the clumsy, poor eye contact, sensorily overloaded me usually ends up sitting alone at the foot of the stairs.
Even a person's case history may not help a GP, and to understand a case history you need to be fully conversant with AS manifestations and behaviour. Some geeks may have AS but a lot of geeks haven't(there are other explanations - sexuality being one - but I cannot figure out why star trek would be relevant to that). So I still think GPs need to know a lot more than they do currently. And I think a campaign is needed (Hi there NAS are you reading these threads?) to get the message across to GPs.
Maybe this doesn't help.....