Guest guest Posted May 24, 2012 Report Share Posted May 24, 2012 Was the issue of extreme toilet behaviors not addressed? To: autism-biomedical-europe Sent: Thursday, 24 May 2012, 7:50 Subject: OT NAS Survey A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at http://www.autism.org.uk/50report If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. Many thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2012 Report Share Posted May 24, 2012 There's nothing at all in this report about the lack of medical provision for people with autism. Bowel problems are NOT EVEN MENTIONED and sleep issues are only really dealt with in the context of difficulties for carers, no mention of possible treatment. Five of the seven case studies feature people with Asperger's or high-functioning autism, some of whom are at university, have an MSc, have worked as a nurse and in a bank. As far as I can see, the views of those of us from this forum who completed the survey have been totally ignored . . . why am I not surprised?Joanne>> Was the issue of extreme toilet behaviors not addressed?> > > > ________________________________> To: autism-biomedical-europe > Sent: Thursday, 24 May 2012, 7:50> Subject: OT NAS Survey> > >  > A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at > http://www.autism.org.uk/50report> > If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group.> > Many thanks> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2012 Report Share Posted May 24, 2012 My comments on the survey about my son having no access to health care for his chronic bowel and sleep problems have been ignored... I would be happy for you to pass this on. A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at http://www.autism.org.uk/50report If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. Many thanks No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.2176 / Virus Database: 2425/5017 - Release Date: 05/23/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2012 Report Share Posted May 24, 2012 There have been so many surveys I can't even remember which one this was. Is there a link to the questions in the original survey to remind us? Were there any questions about education and health? I probably responded as a carer, but I see that the majority of responses which were classified as coming from people with autism were actually filled in by the person with help or by someone else on their behalf. I am annoyed at this because I think I took the early option as a carer and didn't know I could answer on my son's behalf. This " pre-screening " at the beginning of the survey may have prevented lots of parents replying on behalf of the low functioning children. I totally agree with Joanne's post - as usual a tremendous bias in favour of the high -0functioning. The only look in of low functioning/LD was the so-called case study of a family living in Northern Ireland where the child was a special school. Even there whoever had written/edited the report had put a positive spin of things. Bloody NAS! The whole report looks as though it's been written by an advertising/PR organisation for the NAAS. Lots of plugs for NAS services. Margaret > > > A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at > > http://www.autism.org.uk/50report > > If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. > > Many thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2012 Report Share Posted May 24, 2012 Nope Was the issue of extreme toilet behaviors not addressed? To: autism-biomedical-europe Sent: Thursday, 24 May 2012, 7:50Subject: OT NAS Survey A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at http://www.autism.org.uk/50report If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. Many thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2012 Report Share Posted May 24, 2012 Many of us wrote the same, should be renamed National Aspergers Society IMHO My comments on the survey about my son having no access to health care for his chronic bowel and sleep problems have been ignored...I would be happy for you to pass this on. A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at http://www.autism.org.uk/50report If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. Many thanks No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2176 / Virus Database: 2425/5017 - Release Date: 05/23/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 Here are my comments: In the report, I was disappointed to see the ambiguous and unsubstantiated statement that 'with the right (educational) support, we know that people with autism can be successful' without specifying what any of that means – parents need information on what support, for what profile of autism, leading to what outcomes. I thought the report was useful to help raise general awareness of autism but that it was a missed opportunity to really get more important messages out there. The NAS survey of 2005 asked parents what their top priorities were for their children. The top priority was information on how they could help their children. It has been 7 years since this survey, yet still the NAS has not responded to parents top priority. It would have been an excellent chance to let people know that there are interventions that can be used with both children and adults to work on some of the difficulties at the heart of autism such as sensory issues, emotional regulation and rigid thinking as well as on some of the co-existing conditions such as gastrointestinal and immune system dysfunction. The questionnaire was constructed in such a way that there were no questions to illicit responses about these issues. It felt like the survey was written to collect the experiences and views that NAS wanted to reflect, rather than the actual experiences of families. Lots of parents responded by making their points pertaining to these issues in response to other questions – but our views and experiences have been omitted from the report. I found that a very disenfranchising experience. In order for the process of the survey to be transparent, and for NAS to be accountable to its membership, it would have been useful to have an appendix that showed these other responses but more useful for the survey to actually address these issues in the first place. Zoe > > > A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at > > http://www.autism.org.uk/50report > > If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. > > Many thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 Hear hear Here are my comments:In the report, I was disappointed to see the ambiguous and unsubstantiated statement that 'with the right (educational) support, we know that people with autism can be successful' without specifying what any of that means – parents need information on what support, for what profile of autism, leading to what outcomes.I thought the report was useful to help raise general awareness of autism but that it was a missed opportunity to really get more important messages out there. The NAS survey of 2005 asked parents what their top priorities were for their children. The top priority was information on how they could help their children. It has been 7 years since this survey, yet still the NAS has not responded to parents top priority.It would have been an excellent chance to let people know that there are interventions that can be used with both children and adults to work on some of the difficulties at the heart of autism such as sensory issues, emotional regulation and rigid thinking as well as on some of the co-existing conditions such as gastrointestinal and immune system dysfunction.The questionnaire was constructed in such a way that there were no questions to illicit responses about these issues. It felt like the survey was written to collect the experiences and views that NAS wanted to reflect, rather than the actual experiences of families.Lots of parents responded by making their points pertaining to these issues in response to other questions – but our views and experiences have been omitted from the report. I found that a very disenfranchising experience.In order for the process of the survey to be transparent, and for NAS to be accountable to its membership, it would have been useful to have an appendix that showed these other responses but more useful for the survey to actually address these issues in the first place.Zoe>> > A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at> > http://www.autism.org.uk/50report> > If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group.> > Many thanks> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2012 Report Share Posted May 25, 2012 Zoe, If you haven't sent it in yet, there's a typo: it's 'elicit', not 'illicit'. A very good response, by the way! Margaret (Queen of the typos) > > > > > > A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at > > > > http://www.autism.org.uk/50report > > > > If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. > > > > Many thanks > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2012 Report Share Posted May 26, 2012 A Freudian slip there, methinks!! Zoe > > > > > > > > > A few months ago a number of you kindly responded to the NAS survey about living with autism today. The report can be seen at > > > > > > http://www.autism.org.uk/50report > > > > > > If any of you would like to comment on the final report - particularly in the light of your contributions to the survey - and would be willing for me to pass those comments onto the NAS in my final months as a NAS Councillor please reply to me or via the group. > > > > > > Many thanks > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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