Research Autism survey re autism research priorities

[Guest guest]

Hello all

Thanks so much to those of you who've filled in this (awful) survey and

especially for all the great points you have raised on the survey.

Agree it needed a lot more explanation and context, as well as a lot of other

changes (in fact, probably a complete re-write).

I've written to the Chair of RA asking them to withdraw it and do it properly,

including consulting with parents, practitioners and autistic people

(consultation is not RA's strong point) about the scope and format of the

survey.....so I hope with all our combined efforts, the point has been made.

More reassuringly, I was pleased to hear that Tony Charman and his colleagues at

the Centre for Research into Autism Education (CRAE) will be doing a much more

sophisticated consultation with stakeholders around what autism research

priorities should be. I have much more confidence in Tony and co's

professionalism and look forward to that - will keep you posted about

developments.

Thanks again

Zoe x

[Guest guest]

Well done Zoe - I was thinking of writing to Tony Charman and copying in Lorna

Wing.

Two more things about RA's website:

1. They have no rating for ABA, but they give TEACCH one tick. This was also the

case when I last looked a while back. ABA used to have two ticks. I see

political goings on here -as there is a much stronger research base for ABA than

there is for TEACCH. I contacted RA Wednesday and today and was told I needed to

speak to Bernard Fleming who's not in the office until next week.

2.They are also arranging a conference on Challenging Behaviour and I have

several questions about this and am told I need to take them up with

Mills. The conference speakers appear to link in to the NAS schools and to the

approach of low arousal,(and maybe not much else?) surprise,surprise. None of

the speakers appears to have a background in the approach recommended by the

Challenging Behaviour Foundation - ie positive behavioural support after

completion of a functional assessment/functional analysis...)

3. When I rang RA this morning the person answering the phone said " National

Autistic Society " . I though RA was supposed to be independent of the NAS - this

shows they are in the same office!Independent, my foot!

Margaret

>

> Hello all

>

> Thanks so much to those of you who've filled in this (awful) survey and

especially for all the great points you have raised on the survey.

>

> Agree it needed a lot more explanation and context, as well as a lot of other

changes (in fact, probably a complete re-write).

>

> I've written to the Chair of RA asking them to withdraw it and do it properly,

including consulting with parents, practitioners and autistic people

(consultation is not RA's strong point) about the scope and format of the

survey.....so I hope with all our combined efforts, the point has been made.

>

> More reassuringly, I was pleased to hear that Tony Charman and his colleagues

at the Centre for Research into Autism Education (CRAE) will be doing a much

more sophisticated consultation with stakeholders around what autism research

priorities should be. I have much more confidence in Tony and co's

professionalism and look forward to that - will keep you posted about

developments.

>

> Thanks again

>

> Zoe x

>

[Guest guest]

Well done Zoe - I was thinking of writing to Tony Charman and copying in Lorna

Wing.

Two more things about RA's website:

1. They have no rating for ABA, but they give TEACCH one tick. This was also the

case when I last looked a while back. ABA used to have two ticks. I see

political goings on here -as there is a much stronger research base for ABA than

there is for TEACCH. I contacted RA Wednesday and today and was told I needed to

speak to Bernard Fleming who's not in the office until next week.

2.They are also arranging a conference on Challenging Behaviour and I have

several questions about this and am told I need to take them up with

Mills. The conference speakers appear to link in to the NAS schools and to the

approach of low arousal,(and maybe not much else?) surprise,surprise. None of

the speakers appears to have a background in the approach recommended by the

Challenging Behaviour Foundation - ie positive behavioural support after

completion of a functional assessment/functional analysis...)

3. When I rang RA this morning the person answering the phone said " National

Autistic Society " . I though RA was supposed to be independent of the NAS - this

shows they are in the same office!Independent, my foot!

Margaret

>

> Hello all

>

> Thanks so much to those of you who've filled in this (awful) survey and

especially for all the great points you have raised on the survey.

>

> Agree it needed a lot more explanation and context, as well as a lot of other

changes (in fact, probably a complete re-write).

>

> I've written to the Chair of RA asking them to withdraw it and do it properly,

including consulting with parents, practitioners and autistic people

(consultation is not RA's strong point) about the scope and format of the

survey.....so I hope with all our combined efforts, the point has been made.

>

> More reassuringly, I was pleased to hear that Tony Charman and his colleagues

at the Centre for Research into Autism Education (CRAE) will be doing a much

more sophisticated consultation with stakeholders around what autism research

priorities should be. I have much more confidence in Tony and co's

professionalism and look forward to that - will keep you posted about

developments.

>

> Thanks again

>

> Zoe x

>