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
Congratulations on a successful result and thanks evidently to NAS for effective intercession.
Could I use this discussion thread to ask NAS whether anything can be done, by way of circulating information to the health profession about visual signs of ASD?
Undoubtedly things like static or inappropriate facial expression, looking down or otherwise avoiding eye contact, lack of personal tidiness or cleanliness, ticks or stimming and some other manifestations might be what GPs look for.
However not everyone with ASD has noticeable stims, and just because someone smiles or looks serious at near enough the right moments, or manages to look at the other person's mouth or nose rather than straight in the eye, is surely not a basis for diagnosis. This is particularly important in medical consultations that may only last ten or twenty minutes.
What are people supposed to do? Act up to make it more obvious? Or just be themselves and not be taken seriously because they don't have the look GPs have seen in a textbook?
I really am astonished at the ignorance manifest by so many medical professionals who suppose they can spot aspergers immediately.
It seems to me quite imperative that some better diagnostic information is conveyed to the medical profession.