Really sick of Autism "charities"

[mamadadawahwah]

Went to my local "unnamed" autism charity meeting last night.

I am so tired of having to sell their ballots, and go to their functions etc just to raise money for them, when in return, we really dont get a lot for our precious time and commitment.

Further, i find that the two charities i have been involved with, will only talk about "certain" things, its like the old "no religion and politics here please" attitudes.

I really want to be a member of a support group where parents can talk freely without having to worry about cow towing to the aims and objectives of the directors.

Case in point, i brought up biomedical interventions for autism last night. Those of you who were there, and who might be reading this will know what i am talking about.

Everyone's mouth was agape, and I even noticed some rolling of the eyes at my "audacity" of suggesting that children with autism may be medically compromised. When is the UK going to wake up to the fact that research is going on all over the world into the medical issues concerning autism???????

I am not afraid to speak up for the hundreds of moms throughout the UK who use biomedical interventions and i dont really care what parents might think of this approach, what i dont understand is the limited "vision" not only of some parents, but particularly of the main charities in this regard. They dont promote the idea, and in turn parents are not made aware of biomedical interventions as an option for their children.

I think if parents got together as parents only, without the autism charities telling them what to talk about, they might be better off. Its all about money, and i for one, am sick and disgusted at my sons disability being used by some "charities" as a means to make money, create positions of power and flaunt egos.

[Davros]

Exactly mmddww, which is why I ran a support group (not a charity) for parents using ABA for 6 years. I also work voluntarily for the NAS, partly to help people but also to influence (slowly) some of the policies and practices.

[mamadadawahwah]

Davros, they say you can t change things except from within, so i wish you luck.

Your ABA support group sounds interesting.

I think the charities are so afraid if we parents get together and are allowed to "talk" to each other. God forbid, we might realise we have more in common with each other and less in common with their "objectives". All the petitions in teh world arent going to get my kid the help he needs right NOW, like an appropriate school or a funded aba program.

I think they really take advantage of the fact that we as parents of kids with special needs are usually so exhausted and often demoralised that we look to someone else to do our "talking" for us. I dont know but thats the way i see it.

Pity that, cause nobody knows about our kids issues better than the parents. I dont need some trumped up director calling the shots on what I can or cant talk about, or what i can or cannot lobby for.

[Jimjams2]

mmddww- a group of us got fed up with local support meet and moan but do nothing policy. So we've arranged a subgroup -of an "intervention" support group- open to any parents actively using or interested in using interventions whether biomed, ABA. VB, RDI or sonrise- or something else! We will publicise in the NAS newsletter and just take it in turns to host, once a monthish.