You can hardly walk though town these days without tripping over some autism charity or another. In terms of awareness, the message seems to be getting out. On radio, TV and in the papers you hear about autism most days.

So why, you might be forgiven for asking, are these autistic advocates and activists not satisfied? Why are they still complaining?

It’s very simple. Awareness means nothing. What autistic people need is acceptance. Equal rights, equal opportunities. An end to exploitation and second-class status.

What does nearly every autism charity have in common? It was set up and is run by parents of autistic children. However well-meaning they might be they are not autistic. Their aims are not autistic people’s aims. These organisations are run for the parents’ benefit, not for the benefit of the autistic children and adults.

So you get Autism Speaks with their infamous blue puzzle piece: autistic children are missing something. What do we have to do to complete them, put them together, fix them?

So you get all kinds of discussions, presentations, conferences where autism is portrayed as something wrong with the child that must be mended. Heaven forbid the child might not behave like most other children! Quick! Train them how to pass as “normal”. After all, that’s what matters: that they not be an embarrassment or an inconvenience to their parents.

This constant message that autism is a disease, that the child is damaged or broken, leads parents to believe that it is something that can be fixed. That there could be a cure. That they can still hope for a perfect, autism-free child. Because they are led to see autism as something so negative, so awful, that far too many of them will subject their children to terrible suffering with unproven, unregulated and sometimes potentially deadly fake cures.

Do the charities speak out against these quacks? Rarely. The NAS (National Autistic Society) issued a statement after much pressure from activists but stopped short of actually campaigning. Others have done less or nothing.

The high-profile UK charity Anna Kennedy Online has an event, AKO Autism Expo, at Brunel University on the 11th of this month. A week tomorrow. After Anna Kennedy OBE herself was personally contacted by activist Fiona O’Leary with concerns over the legitimacy of one of the companies involved with this Expo, Fiona had hoped for decisive action to protect autistic children and their parents against misleading product claims.

No such luck. The company was dropped as a sponsor but they still have a speaker and are still exhibiting at the Expo. Anna Kennedy Online issued a legal disclaimer whereby they explicitly do not endorse any products or any exhibitors at the Expo. The trouble is that having them at your Expo still looks like an endorsement. I believe the moral and ethical decision would have been to remove any exhibitors and speakers where there are serious questions over the legitimacy of their claims.

The company in question, Brain Abilitiez, uses the BrainRx “brain training”, also known as LearningRx, that was developed by Dr. Ken Gibson, a doctor of optometry. Claims that this training was “clinically proven to permanently improve serious health conditions like ADHD, autism” were investigated by the Consumer Protection arm of the US FTC and were found to be unsupported by evidence in a $200,000 settlement last summer.

I don’t know about you but for me that raises major doubts about the claims made for the intensive, expensive “training” offered by this company. What we see here is that the charity has washed its hands of any suggestion that they have a responsibility to ensure the exhibitors at their Expo are all they claim to be.

So I have to ask, whose charities are they? Who are they run for? Are they being run for the benefit of autistic children and adults? Are they being run for the benefit of parents? Or do they exist primarily as a vanity trip for their founders?

If they truly want to improve the lives of autistic children and adults, then they need to listen to those very people. Not their parents. Not even “professionals” with their neat little labels and theories. But actually autistic people. The real experts. Only then will we see our rights respected. Only then will we see action directly for the benefit of autistic children and adults.