Published on 12, July, 2020
I am an Autism Bee, I don't sting unless someone is destroying the flowers.
I would like a honest opinion of the NAS,, do they function correctly as a Autistic Organisation ?
I don't think so, they have no sting in the tail. When people with autism have major issues in there life, due to the system,, ie, education, courts, councils, health and all the other external proxies putting pressure on autistic children and adults,, the NAS is ineffectual and does not meet the needs of the autistic community.
Give you an example in my life.., the local authority in my area has no specialist adult autism assistance, no autism co-ordinator, non autism local strategy plan, my primary care is not under the autistic nice guidelines, the support workers are non-autistically trained, my GP knows nothing about Autism...
The NAS is a real letdown for the adult autistic community.
Any thoughts,, or is this just my own experience ?
PS ALEX ~ sorry I talk about these things, maybe goes against the brand & PR NAS.
Bear in mind though, autismtwo, that most of these concerns are affecting everybody, not just people on the autistic spectrum.
A lot of charities are being hit. There is evidence that the emails of activists for disabled groups are targetted by the security services as being the same as political subversion. Now give some thought to that one. And even posting on here could be getting some of us listed (even if not our true identities).
Funding has dropped due to the way the lottery is used, and the recession. Some charities use chuggers - aggressive street marketing of regular direct debit payments to charities, which having upset the public, has meant heavy constraints. I'm not aware of NAS using chuggers, thankfully, but they may better appreciate the impact of a chugger on someone with autism.
Councils have cut back on the money made available to charities, and the government is making further cuts on the money they pay to councils which will further affect what councils can allocate to charities in their budgets.
The answer is to lobby. But that gets you in to trouble and noticed adversely by the authorities. Especially so if your dialogue is affected by autism such that language and perseveration offends. It may not be a good idea for most individuals on the spectrum to lobby for reason of clarity of expression, yet clearly for anything to happen, the voice the Government needs to hear is that of adults on the spectrum.
When NAS does a survey they include statements from carers on behalf as well as people on the spectrum.
Perhaps if NAS gave more advice on individual lobbyimng, thast would help raise the profile. They do give some advice, and things like letter templates related to campaigns. But we need to make it possible for people on the spectrum to make their needs known, or for people to do so on their behalf.
Additional to campaigns, I chased my previous local authority independently to get responses regarding adult autism and other campaigns. I kept NAS informed. I have written to MPs backing up campaigns.
However I do have decades of lobbying experience behind me, and a lot of committee work, and I have (mostly) reigned in my AS superlatives, and I can express things fairly clearly and concisely (rather than too bluntly). Not everyone can.
With children and teenagers on the spectrum, parents groups have formed very effective lobbying voices across the country, and really made a difference. But they tend to stop at transition (even though the children and teenagers of many of their members are now adults).
However something clearly has to be done to emancipate adults on the autistic spectrum.
It cannot work just as NAS on its own. We need to find better mechanisms for adults on the spectrum to be heard.