Raising awareness of autism

A large part of the problem is that the action and the funding for action lies with parents groups. This has been the situation for decades and shows no sign of changing. Some parents groups allow membership for people with an autism diagnosis, but most don't. And they tend to be focussed on those with high dependence, therefore a parents' problem (autism/asperger's syndrome by proxy), and tend not to be sympathetic to those whose autism allows them to be independent, or relatively so.

What that means is that people with autism have no direct representation. While obviously the fact some people on the spectrum need someone acting for them has tended to mean that people on the spectrum as a whole are not empowered, are disenfranchised, not considered to have a view.

Also with the employment difficulties most face even with abler, as a group we cannot raise funds in the way parents groups can. So we cannot pay to have a voice.

There are mechanisms by which we can speak out. This forum is useful though goodness knows if anyone is listening out there...  If there is a local NAS Group or a Parents Group that would let you get involved in campaigning, that might help, but they'll tend to want you to campaign for benefits to those more markedly affected (and bore you to tears with how much parents suffer - does leave you wondering sometimes who's got the autism diagnosis).

Currently there are patient participation groups for GP surgeries, dentists, hospitals and clinics that can provide a mechanism for raising issues affecting autism provision.  Most local authorities have a commissioning manager and a participation board supposed to address autism, but it is more often than not just an add-on to either the learning disability or mental health participation board. This means in some cases that you can only sit on the board if you have autism AND learning disability. And they will only discuss issues for people with autism AND learning disability (as if if you haven't a learning disability you not only haven't got autism, you haven't a view to be heard.

Your local authority should provide forums on a regular basis addressing social service needs and autism should be represented on those. Similarly there should be focus groups within the health service that the public can attend. It is unevenly available and very variable.

Despite these limitations one of the key things about having abler autism is you can speak up and make representation. If you can do so you do have understanding of the issues and a valuable contribution to make.

However I do feel NAS needs to speak up more and create more opportunities. It is all very well putting articles on the website and in Communication about abler people doing well at something - it has to lead to real emancipation.

A large part of the problem is that the action and the funding for action lies with parents groups. This has been the situation for decades and shows no sign of changing. Some parents groups allow membership for people with an autism diagnosis, but most don't. And they tend to be focussed on those with high dependence, therefore a parents' problem (autism/asperger's syndrome by proxy), and tend not to be sympathetic to those whose autism allows them to be independent, or relatively so.

What that means is that people with autism have no direct representation. While obviously the fact some people on the spectrum need someone acting for them has tended to mean that people on the spectrum as a whole are not empowered, are disenfranchised, not considered to have a view.

Also with the employment difficulties most face even with abler, as a group we cannot raise funds in the way parents groups can. So we cannot pay to have a voice.

There are mechanisms by which we can speak out. This forum is useful though goodness knows if anyone is listening out there...  If there is a local NAS Group or a Parents Group that would let you get involved in campaigning, that might help, but they'll tend to want you to campaign for benefits to those more markedly affected (and bore you to tears with how much parents suffer - does leave you wondering sometimes who's got the autism diagnosis).

Currently there are patient participation groups for GP surgeries, dentists, hospitals and clinics that can provide a mechanism for raising issues affecting autism provision.  Most local authorities have a commissioning manager and a participation board supposed to address autism, but it is more often than not just an add-on to either the learning disability or mental health participation board. This means in some cases that you can only sit on the board if you have autism AND learning disability. And they will only discuss issues for people with autism AND learning disability (as if if you haven't a learning disability you not only haven't got autism, you haven't a view to be heard.

Your local authority should provide forums on a regular basis addressing social service needs and autism should be represented on those. Similarly there should be focus groups within the health service that the public can attend. It is unevenly available and very variable.

Despite these limitations one of the key things about having abler autism is you can speak up and make representation. If you can do so you do have understanding of the issues and a valuable contribution to make.

However I do feel NAS needs to speak up more and create more opportunities. It is all very well putting articles on the website and in Communication about abler people doing well at something - it has to lead to real emancipation.