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

February 5, 2012

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

February 5, 2012

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 -0000To: "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

February 5, 2012

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 -0000To: "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

February 5, 2012

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 -0000To: "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

February 5, 2012

Hi Natasa

You may well be right - though it would be a shame to miss an opportunity where the NAS is polling everyone in the autism community in ythe uk - not just its membership. It would be good to bring their attention to interventions - particularly as the survey actually ignores their existence. Members of other lists where interventions are discussed have already put comments about their interventions in the comment boxes of the survey. It would be good to see bio-med interventions mentioned too.

The NAS is the organisation with the greatest political influence in the UK at the moment. It uses its national surveys to direct policy. So using the survey to bring attention to interventions might not be a bad thing. But I understand how you feel ....

[Autism-Biomedic al-Europe] 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

February 5, 2012