Re: Re: OT: NAS survey asks NO questions about interventions - help please!!

[Guest guest]

Yes fair point, thanks.NatasaReply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Mon, 06 Feb 2012 18:58:40 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: OT: NAS survey asks NO questions about interventions - help please!!

Hi Natasa

I share your frustrations and in fact have just resigned from NAS Council over this very issue.

I guess the point is to have our say. If we feel strongly about interventions and dont bother telling them anything about our views, they'll never know - but if feel strongly and do give feedback about our disenfranchisement, at least the issue is raised. The more people who raise it, the harder it is to ignore.

I do know that there are still people within NAS Council who are fighting this corner (hats off to them for sticking it out) and they will use all the ammo you give them to move the issue up the agenda.

If we dont give them any ammo, they are voices in the wilderness.....

Zoe

>

> Huh what is the point of their surveys if they didn't listen to findings of

> the last one? I cannot see them talking or pushing for interventions, or am

> I missing something?

>

> "The last big survey the NAS did of its membership showed very clearly that

> top of the list of the things members wanted it to do was to identify

> effective interventions."

>

> Sorry to sound negative, don't mean to say we should not act or tell them

> what we think/feel, but is there anything people could do to make NAS

> actually ACT? Otherwise it may well happen that this survey shows that their

> members want interventions, only to have another survey few years later,

> with NAS doing nothing with regard to their members wishes in the meantime?

>

> Natasa

>

>

>

> Reply-To: "Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Date: Sun, 05 Feb 2012 10:19:53 -0000

> To: "Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Subject: OT: NAS survey asks NO questions about

> interventions - help please!!

>

>

>

>

>

>

> As part of the 50th anniversary of the NAS they are asking for people with

> autism and their carers to tell them what it is like to live with autism in

> hte UK today. I have just completed the survey and am very disappointed in

> the range of questions that are asked.

>

> There seems to be an underlying and very restrictive assumption about the

> sort of things that would improve the lives of people with autism - eg more

> funding and more "support". Whilst these are needed there is no opportunity

> in the survey to suggest that we need effective interventions (whether that

> be bio-medical, educational, sensory or whatever).

>

> For instance one of the questions asks if more "support" is needed to access

> leisure activities/work/educational activities etc. There is no opportunity

> to say that someone might wish to engage in such opportunities but are

> prevented from so doing, not by lack of "support", but because of sensory

> difficulties/anxiety/medical problems/inability to interact etc etc which

> need to be addressed.

>

> The last big survey the NAS did of its membership showed very clearly that

> top of the list of the things members wanted it to do was to identify

> effective interventions.

>

> Please take the time to fill in this survey and ask others to do likewise.

> If you want to raise the issue of interventions the only way you can do so

> is to write in all the comment boxes about it for any of the questions.

> (There are no comment boxes for the questions where it might be relevant -

> so just get your comments in anywhere on the survey)

>

> To get to the survey, go here:

>

> http://www.autism.org.uk/

>

> and then click on the link that says 'Tell us about your experience of

> autism' middle right of page under 'Campaigns'

>

> Do please pass this on to other people you know who might be interested in

> responding - thanks

>

> Thanks

>

> Zoe

>