Autism Facebook groups - Parents v Adults

The whole issue of parents' groups is a fascinating phenomena.

I think that the very difficult nature perceived in children growing up on the spectrum has given rise to a special case approach to disability.

You are more likely to find a broader mix of parent and affected person dialogue for deaf/hard of hearing, blind/partially sighted, mobility groups or with less visible disabilities like dyslexia. There, particularly with the last, its about the individual with dyslexia!

Some parents' groups do tend towards a state of "autism by proxy", and I've encountered several parents' groups in the past where it is exclusively parents, and the children, if dragged along to meetings, are just incidental.

However the other side of the problem is that individuals on the spectrum, except at the more manageable end, are not well placed to speak up for themselves (OK just bear with me on the specifics of this - I know some can) but more importantly are not economically placed to be able to put money into campaigning. There are a lot of successful people with often severe dyslexia who can contribute funding and influence campaigns.

I've recently moved to another part of the country, but where I was previously I was a member of a parents group. I was only able to do this paying as a professional at professional rates and full whack on top for events. There was no membership category for people on the spectrum, who were in any case invisible unless accompanying parents, where they often appeared more like mascots, and adults on the spectrum were rarely brought along. Occasionally if I let slip to members at social gatherings that I had aspergers, I got shunned or dirty looks.

This state of affairs must be pretty unique for a disability, as other postings have confirmed, its as if the people with the condition don't matter. Yet parents in such groups can be fiercely defensive about the rights and provisions they seek for their children. It is clearly well-intentioned, just somehow or other, these people don't seem to see that there's an anomally because the people WITH autism don't appear to count in their own right.

The trouble is this is going to go on for years. his is because adults cannot change it. Many have limited independent finance because of the difficulty finding emplyment. So we have no way of changing the predominance of the "parent" power lobby. We have to be grateful for what they can do and have done to get autism more visible. But I don't think "parent power" is going to give way to the "those of us with" group.

Not least various "cures" and the efforts of parents' groups on behalf of their autistic children have established the myth that you "grow out of it". And politicians are still influenced by the parents' group lobbies so they still believe it, despite NAS campaigns to increase the profile of adults. It also explains why GPs and other health workers are still sceptical about adults.

So I think there actually has to be a major rethink before there will be any recognition of the rights of people ion the spectrum to be heard. It is the singular peculiarity of "parents groups" in autism that has given rise to this anomally. It wont change gradually except over many years of wrecked lives.

There has to be, in effect a "revolution" in the way we think about autism to break free of this "parents orientated" perspective.

The whole issue of parents' groups is a fascinating phenomena.

I think that the very difficult nature perceived in children growing up on the spectrum has given rise to a special case approach to disability.

You are more likely to find a broader mix of parent and affected person dialogue for deaf/hard of hearing, blind/partially sighted, mobility groups or with less visible disabilities like dyslexia. There, particularly with the last, its about the individual with dyslexia!

Some parents' groups do tend towards a state of "autism by proxy", and I've encountered several parents' groups in the past where it is exclusively parents, and the children, if dragged along to meetings, are just incidental.

However the other side of the problem is that individuals on the spectrum, except at the more manageable end, are not well placed to speak up for themselves (OK just bear with me on the specifics of this - I know some can) but more importantly are not economically placed to be able to put money into campaigning. There are a lot of successful people with often severe dyslexia who can contribute funding and influence campaigns.

I've recently moved to another part of the country, but where I was previously I was a member of a parents group. I was only able to do this paying as a professional at professional rates and full whack on top for events. There was no membership category for people on the spectrum, who were in any case invisible unless accompanying parents, where they often appeared more like mascots, and adults on the spectrum were rarely brought along. Occasionally if I let slip to members at social gatherings that I had aspergers, I got shunned or dirty looks.

This state of affairs must be pretty unique for a disability, as other postings have confirmed, its as if the people with the condition don't matter. Yet parents in such groups can be fiercely defensive about the rights and provisions they seek for their children. It is clearly well-intentioned, just somehow or other, these people don't seem to see that there's an anomally because the people WITH autism don't appear to count in their own right.

The trouble is this is going to go on for years. his is because adults cannot change it. Many have limited independent finance because of the difficulty finding emplyment. So we have no way of changing the predominance of the "parent" power lobby. We have to be grateful for what they can do and have done to get autism more visible. But I don't think "parent power" is going to give way to the "those of us with" group.

Not least various "cures" and the efforts of parents' groups on behalf of their autistic children have established the myth that you "grow out of it". And politicians are still influenced by the parents' group lobbies so they still believe it, despite NAS campaigns to increase the profile of adults. It also explains why GPs and other health workers are still sceptical about adults.

So I think there actually has to be a major rethink before there will be any recognition of the rights of people ion the spectrum to be heard. It is the singular peculiarity of "parents groups" in autism that has given rise to this anomally. It wont change gradually except over many years of wrecked lives.

There has to be, in effect a "revolution" in the way we think about autism to break free of this "parents orientated" perspective.