informaton

It is difficult to avoid the fact that most autism support and lobbying is driven by parents groups. NAS itself is basically a parents group.

If you ever go to a local parents group, you probably wont see any older individuals on the spectrum unless accompanied by parents. Indeed you may not be able to join as a person with autism. Membership is often limited to parents or professionals. Consequently all the funding, all the publicity, all the campaigning and most of the visibility is about parents - autism by proxy.

Part of the problem is that people on the spectrum are less likely to be in a position to be collectively pro-active. Many do not have steady jobs or remunerative jobs, so one of the primary limitations is having no funds with which to set up a group.

And those of us who have jobs and means - well we don't have reeal autism, so we don't count. And indeed there is still much stigma surrounding autism, as if it is a mental health condition. So able adults who could campaign are discouraged (as an able aspie who does campaign and is pro-active - I forever feel ignored as if I've no right to express solidarity).

Another problem is that people on the spectrum don't seem to team up to combine forces as a pressure group. Indeed meeting another person on the spectrum may not mean a lot, as despite the name of the condition, people are very diverse, and we seldom actually talk to each other about having autism, but often a group of people with autism aren't interested in the same things. Try going to an autism social group - there are some in parts of the country - lots of people not talking.

I find the parents lobby selfish (and I'll no doubt get a lot of stick for saying it, but it is true). They don't like people claiming to have a diagnosis who are managing with their lives. They see such people as diluting or distracting funds away from their main concerns.

Also there is still this frankly ridiculous belief that with coaching you grow out of it - that somehow people in their twenties or thirties or older didn't try hard enough/ didn't make good use of the opportunities parents groups provided. *We spent all this money on you, and you show us ingratitude by not recovering*.

I think it is going to take a long time to shift from being *about parents* to being about *people with autism*.

That is what is so unusual about autism. Most disability groups recognise that there is an adult dimension - that adults still need help. Autism remains a campaign for disgruntled parents. Which is no use at all.

I really wish the parents would grow up

It is difficult to avoid the fact that most autism support and lobbying is driven by parents groups. NAS itself is basically a parents group.

If you ever go to a local parents group, you probably wont see any older individuals on the spectrum unless accompanied by parents. Indeed you may not be able to join as a person with autism. Membership is often limited to parents or professionals. Consequently all the funding, all the publicity, all the campaigning and most of the visibility is about parents - autism by proxy.

Part of the problem is that people on the spectrum are less likely to be in a position to be collectively pro-active. Many do not have steady jobs or remunerative jobs, so one of the primary limitations is having no funds with which to set up a group.

And those of us who have jobs and means - well we don't have reeal autism, so we don't count. And indeed there is still much stigma surrounding autism, as if it is a mental health condition. So able adults who could campaign are discouraged (as an able aspie who does campaign and is pro-active - I forever feel ignored as if I've no right to express solidarity).

Another problem is that people on the spectrum don't seem to team up to combine forces as a pressure group. Indeed meeting another person on the spectrum may not mean a lot, as despite the name of the condition, people are very diverse, and we seldom actually talk to each other about having autism, but often a group of people with autism aren't interested in the same things. Try going to an autism social group - there are some in parts of the country - lots of people not talking.

I find the parents lobby selfish (and I'll no doubt get a lot of stick for saying it, but it is true). They don't like people claiming to have a diagnosis who are managing with their lives. They see such people as diluting or distracting funds away from their main concerns.

Also there is still this frankly ridiculous belief that with coaching you grow out of it - that somehow people in their twenties or thirties or older didn't try hard enough/ didn't make good use of the opportunities parents groups provided. *We spent all this money on you, and you show us ingratitude by not recovering*.

I think it is going to take a long time to shift from being *about parents* to being about *people with autism*.

That is what is so unusual about autism. Most disability groups recognise that there is an adult dimension - that adults still need help. Autism remains a campaign for disgruntled parents. Which is no use at all.

I really wish the parents would grow up