An inability to adapt easily to the false "imposed" reality of our lager society. Namaste
All of the descriptions of autism are whaffle and miss the essential truth - everybody has autism - the first specialists to use the terms autism and autistic said everybody has the condition, and it amounts to thinking divorced both from logic and from reality. Key word - EVERYBODY - so having it doesn't make you neurodiverse - it makes you neurotypical. In my thread entitled Neurotypical v. Neurodiverse, I've illustrated how neuroscientists define it as all brainwave frequencies above 13 cycles per second, which means all children have it, until the age of about 12, and all adults have it if they have normal sleep cycles. Those who do not have normal sleep cycles, i.e., those who suffer with sleep deprivation are generally the ones who go insane. And, so, adults who don't manifest autism in the course of their sleep cycles go insane. This is the complete opposite to how we auties and aspies are treated. We are treated as the ones who are insane, and yet we are the ones that are normal. Yep - it's true - it isn't us who are insane - everybody else is - but they outnumber us - so they say we are insane and they win the argument only because they outnumber us - that's democracy at work - we are classed as insane for a political reason - it's a mad, mad, mad, world we live in.
PS The link to the language research released is broken!
I do not mind the label at all because the label is something for me to say to appropriaate others how they can help me the best as and when I need understanding and help. I did not realise this research been on going for so long. Just in this month's journal.
I however am suprised at the really big logos etc on Amazon and on the NAS site for te-shirts etc. Whislt I don't mind the label why should I wear a teeshirt etc big horrible letters saying am autistic or worse for siblings, their brother/sister is autistic. Personally I think that is a horrible design and suprised if anyone dresses in those clothes.
For me, it simple the am autistic, for those who understand more about it will ask about it. For those with no interest and don't want to know they do not have to enquire any futher. Whilst working out how it affects me is a totally different issue. A simple broad definiation to describe that i have hidden difficulties is nice.
my blood condition is so complicated in its latin form to say to people and over the years I have learned how to translate it - into laymen terms. So nice that I don't have to do that with Autism.
Keep is simple
Thanks for the tip Longman.
I've just read through the whole SAGE document from beginning to end.
The questions asked were good, the responses varied and enlightening. But the imbalance between the number of Aspie's/Autistics who took part, and the number comprising the rest of the groups, is a disgrace.
One answerer said that more weight should be attached to the views of people who have autism or Asperger Syndrome. The ASC's did not even have equal numbers to match that great raft of professional opinions, let alone being given precedence.
Strangely, the 'Abstract' lists members of the autism community in this order... 'autistic people' first, followed by parents, then lastly the 'broader support network' (presumably including all the professionals). The survey numbers did not reflect the blurb.
The NAS's reported preference of professionals for the term ASD was slightly different in the tables - as ASD came equal with several other terms. I was relieved to read that many professionals feel uncomfortable with the use of Disorder... hurrah! Perhaps such a negative term will be phased out.
There was much support for 'Asperger's' and 'Aspie'. I can only imagine how much more support Aspie/Asperger's would have gained had the numbers in the different participation groups not been skewed.
With smaller numbers you get results and opinions that seem disjointed and disconnected. With larger numbers you learn much more and a bigger picture emerges. With each of the groups participating being equal you get a fair result. As the group numbers were so unequal, surely those bar charts are not completely valid.
I find it worrying that the conclusion seems to regard the survey results as a kind of signpost... for the professionals maybe, but not for the huge community of people who actually have Asperger's and Autism.
Here was chance to learn what large numbers of AS/ASC's want for themselves and from other people.
I cannot help thinking that a huge opportunity has been missed.
You need to look at the paper now published on SAGE, for which there is a link on the link given by Sofie Mod.
There were actually 4662 respondents, but they eliminated 19 who didn't indicate a connection with autism, 453 who didn't answer all the questions (that is an unusual move, people can chose not to answer a question on surveys without being disqualified; did they make it clear that failure to answer all the questions meant disqualification? - I cannot recall), 254 were under 18 or didn't give their age (was an age factor made clear?), and 396 were not in the UK (was that made clear?). If these conditions were not made clear disqualifying in this way amounts to "doctoring" the results.
Of the 4662 respondents, adults with autism were less than 11 (ELEVEN) %.
Another peculiarity was that the majority of respondents were female.
The way the survey went out was first to an initial mailing list from which word spread. This tactic by NAS always tends to hit parents groups rather than people with autism.
Of the parents and carers 1664 were parents or carers of children, YET RESPONSES FROM UNDER 18s WERE DISQUALIFIED!! Only 614 were parents or carers of adults with autism, and 380 were friends or relatives. There were 967 professional responses, plus 58 researchers, and 85 students.
And NAS supposes this survey to be at all meaningful................??
3,470 people were asked... but only 502 were autistic adults, far outweighed by the numbers of parents and professionals. How is this right? Surely the autistic adults are a significant group, having grown up with the condition and gone through trying to find a place in the world whilst dealing with their ASC.
I find it dis-heartening that the professionals you asked preferred the term Autistic Spectrum Disorder. Simon Baron-Cohen, Tony Attwood, and the Autism Research Centre advocate the more positive term Autistic Spectrum Condition.
Baron-Cohen has said that ASC is a 'difference'. In many cases it is an advantage.
The fact that your professionals preferred 'Disorder' indicates to me that the concept of ASC being a 'Difference' is being pushed out... .
Hi Nora mcgregor,
The information about the describing autism report can be found here http://www.autism.org.uk/describingautism
Sofie Mod
The link to the survey doesnt work. Anyway i am
schoked by How autism can b undected so often
its just outraging Thére are different degrees, différent spectrums
and in psychiatry when u r no longer à Child over hère in france
nowone investigates.... Y? Its a very bitter observation and most people find out
after years of internements, electro shocks, heavy médication and so on
how normal is that?
I would say that it's social dyslexia because people with autism can do all of the social related things that neurotypicals can do, but they just need more support to help them catch up because they haven't picked up on some things. I mean if you have ADHD, you can still pay attention, but it takes a bit longer to divert your attention to something than those without it. People like this aren't handicapped and they should NOT be treated like it - they merely need more and proper support! Everyone learns at different rates! Sure they may never be perfect when they have acquired these skills, but those with disabilities and those without make mistakes, because we are human.
Hopefully this makes sense,
Karajan ;)
I think the term(s) used should reflect the preference of the individual or group concerned. To defer to another's preference (e.g. family member or staff member) is at best ignorant. Only if a person is unable to express a preference should an "educated guess" be made. Using the preferred language when talking about an individual or group is a basic sign of respect, rather than someone else deciding they know best.
If, as an organisation, a decision is made to use a particular term for consistency in communications, then there should be a brief explanation about the decision making and acknowledgement that individual preferences exist. For example "NAS acknowledges that individual preferences exist when discussing autism. NAS uses the term "autistic people" because in a survey of our membership this was the most preferred term among respondents with formally or self diagnosed autistic spectrum conditions." Then include a link to the source of the evidence.
Interestingly, this from a thread on here, dated 1/12/2010
Good grief! Will this labeling debate never end?
I haven't been on here for long enough to know if Longman is correct, but he's ASD so I believe him.
I'm told that this is an important piece of research, but not why, or for whom. It is of academic interest to me so I fail to see the importance at all, particularly as the debate still rages amongst professionals. As long as someone refers to me as 'aspie, ASD or on the spectrum, I will understand those terms.
Aspie is who I am, not something I've got, and the only label I need is the one that I was christened with. I find 'Aspie' to be a comfortable shorthand and easy to use, to describe the type of person that I am, although it sort of pretends that I am 'higher functioning' when even that term is rubbish. What is functionality?
I am 'On the Autistic spectrum' for general purposes, simply because it's the widest known and most descriptive way to tell people who aren't likely to know or understand the term Aspie. Whatever the label used, knowing the label doesn't mean people will also understand the condition.
I'd like to see the term Asperger's go alltogether for the same reason, it implies to those same people that somehow, the effects of Autism on me are minor compared to others, so it's misleading their consideration of us. We can keep Aspie for our own use, for the reasons I said earlier. I'd like that.
Perhaps we ASD adults should have our own global survey and decide for everybody what we'll use? Now, wouldn't THAT be empowering?
Only 12% of the responses were people who had autism. Is NAS talking to the right people?
I assume the numbers surveyed indicate that some people answered in more than one category, as the total number of responses was 4198 of whom 502 were on the spectrum.
The survey also excluded under 18s. This may have been a requirement of filling in the survey, but whether over 18s are reached by such surveys is the big question. Some over-18s may be NAS members, but usually you cannot be a member of a parent group as a person with autism, only as a parent.
Responses from parents may represent a perspective of people with autism, but is it the same.
Research about living with autism seldom seems to ask people with autism.
