Raising awareness of autism

I really like the star/rainbow analogy you use here treeswaving.  

I agree with what you say about understanding of the spectrum.  In fact before understanding autism (especially how it presents in girls) I just understood so-called 'high-functionning' autism as in 'The Curious Incident of the Dog in the Nightime'- another view that people have of aspergers, and as it being distinct from autism.  In my opinion, this book gave people another stereotyped and misunderstood view of what the basis of autism really is (for example that all autistic people must have some sort of obvious and highly unusual OCD type obsession, whereas in reality this can manifest in many different ways and I feel is only a symptom of the difficulties).

Like you mention above people say things like 'we are all on the spectrum' which really annoys me as it devalues the huge struggles of autistic people.  There needs to be a complete overhaul of the current image of autism, but how to do this...

Can we compare this struggle for understanding to another movement?  (I know it has been likened by some to 'gay rights' but I don't know enough about this to say- although I am sure it is very different it may help to have a model to use in terms of changing perceptions).

I use the term 'autistic traits' as I don't feel that I can use the term autistic even though  I have effectively been told that I am but have masked it.  I think this helps me to give a term to qualify me in my mind and the minds of other NTs, however maybe it doesn't help the general cause if I use this term to describe my difficulties.  I have been told by professionals in the field that I may not get a diagnosis because I am female (and the criteria may not address this), however I have played with this in my mind about telling family/whoever I want to about being autistic and I don't think they would believe me without a diagnosis from someone qualified to give it.  Anyway this is going off-point slightly but however I understand that this is an issue for many females, and therefore again raises another difficulty in helping people to understand the 'spectrum'- because if some of us could just be viewed as 'quirky' rather than viewing the world completely differently then it is difficult to identify and also define.

I am finding this discussion very interesting, I don't really know what I think properly so it is great to debate and redefine my ideas as well as looking for ways to raise awareness.

think it is very much a case of needing to work together.

as someone with autism and having an autistic child, i see both sides.

as a parent you do have to fight hard to get your child's needs recognized and supported. it is relentless.

as a person with autism, my issues are the same, but often go unrecognized. the frustration is immense.

i really think there needs to be campaigning to get the concept of SPECTRUM understood.

the world sees autism as polarised. either what they call low functioning or high functioning (terms i despise) so most people see  autism as being either a severerly disabled person, with no communication and no interaction with the world,  sitting in a corner rocking or as a genuis or savant like in the film rainman.  the vast majority of people withautism fall between these 2 polarities, but the stereotypes and assumptions remain. that is why the concept of spectrum needs promoting.

and not 'we're all on the spectrum'. the whole world's population does not have autism - we are NOT ALL on the spectrum, but those of us with autism are !

the spectrum to me is not linear from severe to mild, low to high, non verbal to verbal. we all have disjointed and uneven profiles. some bits we manage well, some bits we are severly affected by or impacted by. we are black and white thinkers, but the concept of autism is not black and white! we fitonto the spectrum as an individual, not at one distinct point, but as a multi armed and  uneven star. the length of our many sides extending in many directions, some short some long, reaching out into the  different parts of the rainbow as we are affected in so many ways and fit onto the spectrum in many parts and places. that is what needs to be understood.

rather than fight amongst ourselves as to who is the most affected, who has the more severe autism, we should work together - people with autism and parents, both of whom have unique but valid perpectives on autism,  to get the general population to understand more about this condition and the little things that they could do that would make such a big difference to EVERYONE affected by autism.

Though I'm not criticising anyone for using the term, I don't like 'mild autism'. I feel it is a greater ability to mask and cope rather than being 'less autistic'.

I don't think it is at all like being partially sighted. Its like being a cat when everyone else is a dog and you must bark and wag your tail to fit in.

I'd agree with Longman about our lack of clout. And the internet is full of blogs in which parents narrate their life with their autistic child, often portraying them as an inspiration or a source of worry and disappointment. Neither is at all helpful to autistic people.

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.