There has been much discussion about my position with regard to the ND movement on the Biomedical Europe Yahoo list. I have only read a few posts and will comment here, including a few extracts from parents in support of my actions. Perhaps it is indeed the time for me to clarify openly what I think of the ND ideas.
A friend called my attention to this. It is with some amusement I must say that I read some of the posts. I understand that the issue seems to have started from a video I made called Neurodiversity / Naturtrane Diversity. I thank you for watching it.
A friend called my attention to this. It is with some amusement I must say that I read some of the posts. I understand that the issue seems to have started from a video I made called Neurodiversity / Naturtrane Diversity. I thank you for watching it.
I know the issues are serious and I know you all want the best for your autistic child/children as much as I do for my child and for all the other children and adults I was fortunate to assist. But I am not opposed to the ND movement because part of their message is very valid. I don’t agree with everything they do and to tell the truth I don’t know everything they do, but I agree with some parts. Particularly that changing the attitude of others, being family member, general public, teachers, medical practitioners, potential employers, with a greater knowledge and acceptance of the condition will have enormous beneficial impact to the individuals and their family. Isn't it like being half way there? In addition, I dislike conformity of being, I prefer differences and individualities of mind. The diversity of behaviours, modes of expression, preferences, responses to environment is something I am profoundly interested in, much more so than of anyone who is conformist by nature. I don’t think anyone should reproach this of me, because if I did not have that personality trait, I would not be pushing and challenging boundaries so much, putting in place so much support the autistic people need. I am fine with someone who thinks differently, has skills in certain areas and appears less able in others, like socially for example. I think that’s OK to be that way as long as the person remains valued for how he/she is and helped. Of course I want everyone to succeed to the best of their potentials. Of course I want every one to be happy and healthy and this is exactly what motivates my work, if not my life. But we also need a drastic change of attitude towards disability and autism. More opportunities for inclusions, more acceptance. More cool off, relax and let’s work something out all together- attitude.
I thank those who have balanced the views expressed on the list (again, I have not read all the messages, so I will not be comprehensive here). I include some extracts, thank you again
I thank those who have balanced the views expressed on the list (again, I have not read all the messages, so I will not be comprehensive here). I include some extracts, thank you again
We all have a lot of work to do, and we need what everyone can bring on this issue. United not divided, for our children.
Lorene Amet
We need people like Lorene to push the intellectual boundaries of the debatesaround autism, some of this is very academic, some is personal, and we cant likeeverything she says or proposes - we also can’t homogenise our opinions.I am really disappointed to see this descend into such a personal attackthough. It puts off new people who might need the help on here.Can we let it go now please, or at least contact her directly - I'm sure shewould be pleased to explain, given the opportunity.
Hi all,I'm a member of this group though haven't contributed or even lurkedfor a long time. But I feel I must rush to the defence of Lorene Amet.My son is adult, has Asperger Syndrome and we live in Scotland. We know Lorene well. Our son has been 'caught up' in the psychiatric system for a decade. Lorene has been a great source of support to us, dropping everything to write reports and attend tribunals for him -speaking to psychiatrists and mental health nurses in an effort to educate them in the problems faced by ASDs. This might not be seen to be part of her mission in life - but she helped us none the less. Thanks to Lorene's input our son even got discharged from a psychiatric intensive care unit at one point!! [unheard of] And by Jove she didn't hold back. Absolutely shredded the psychiatrists. She went that extra mile. She didn't have to - but she did. She is equally passionate about her research and helping children - and adults.Way to go Lorene!
We need people like Lorene to push the intellectual boundaries of the debatesaround autism, some of this is very academic, some is personal, and we cant likeeverything she says or proposes - we also can’t homogenise our opinions.I am really disappointed to see this descend into such a personal attackthough. It puts off new people who might need the help on here.Can we let it go now please, or at least contact her directly - I'm sure shewould be pleased to explain, given the opportunity.
Hi all,I'm a member of this group though haven't contributed or even lurkedfor a long time. But I feel I must rush to the defence of Lorene Amet.My son is adult, has Asperger Syndrome and we live in Scotland. We know Lorene well. Our son has been 'caught up' in the psychiatric system for a decade. Lorene has been a great source of support to us, dropping everything to write reports and attend tribunals for him -speaking to psychiatrists and mental health nurses in an effort to educate them in the problems faced by ASDs. This might not be seen to be part of her mission in life - but she helped us none the less. Thanks to Lorene's input our son even got discharged from a psychiatric intensive care unit at one point!! [unheard of] And by Jove she didn't hold back. Absolutely shredded the psychiatrists. She went that extra mile. She didn't have to - but she did. She is equally passionate about her research and helping children - and adults.Way to go Lorene!
Posts
neurodiversity only changes attitudes of autistic people for the negative not the positive. They only bully people, spread, hate, lies and propaganda. What is any person who knows nothing about autism to think of autism when reading the crap these people constantly write? Not very highly I would imagine. They also give autistics much more severe than they are, who could never write a blog post or rebut their nonsense a bad name.
ReplyDeleteChanging attitudes towards autistics may be nice, but it is a formidable problem, probably more formidable than finding a cure, and it does not solve half the problem or even a tenth. The disability is still there.
Jonathan
ReplyDeleteI wonder what is the proportion of people with autism able to express their view who share the ideas of the ND movement, would you know? Has this been evaluated by anyone? I feel almost inclined to set up an online survey questionnaire and see what we would get. Trouble is that it might not be that a reliable sampling, and the authenticity of the accounts might be flawed. None the less I’d quite like to give it a go, just to try really to sample a proportion of that population.
Lorene
I have no idea what the true results would be. Such a survey would be like going to a small city in alaska and surmising that 99.9% of americans support the mccain-palin ticket for the president. Also, the ND sock puppets would go on line and contaminate the result of the poll given how corrupt and dishonest they all are.
ReplyDeleteI have written in my essay on ND on my stories website the reasons the most visible NDs do not comprise a representative sample of autists, i.e., the high proportion of female male ratio which does not exist in the general population of autists and given the fact that females in the general population of autists tend to be on the more severe end of the spectrum and other reasons. You might consider going to my other web page and reading my essay if you have not read it already, though i don't have the URL handy you can link to my website from my blog and find the essay there.
Hi Jonathan
ReplyDeleteYes I had read these comments on the sex ratio, but I didn’t comment then because I had commented on that issue on your blog before. My views are slightly different on that topic, though when I first got into autism, I was also under the same impression that autistic girls tended to be more severely affected than boys. Now, I have come to realize that autism in girls can be very subtle too, to the point that they could stay undiagnosed for longer, essentially because they are not challenging as much as boys the school system. This view totally makes sense when you look at sex differences in children’s play, aggression, behaviour generally. Also, even with their autism difficulties, there is something in their personality of a slightly more social/conformist nature that boys do not have which kind of hinder their autism. But this is a personal view as you know. I'll e-mail you the link of a video I made on that topic. In our group of children we have 3.1 boys for 1 girl, so this is more or less in line with what has been published.
The argument of sex ratio is not sufficiently strong though to indicate that the ND movement is not representative of the ASD population.
I agree with your concerns about reliability of surveying ND ideas in the ASD population. I don’t think there would be an easy reliable way to address the question of representation. No matter how I think about it, I see problems that would biais the outcomes. Still, I really think to sample accurately the opinion of ASD people on their disability, the quality of their life, what they would hope for, their view on cure and research would be a very good sociology study to do. Maybe, I could discuss this with the NAS, or sociology/ psychology University Depts. I think one should take as much as possible in account the opinion of people and not the ones of others (like me) who speaks for them. I have just made myself redundant, so I shut up here.
This comment has been removed by a blog administrator.
ReplyDeleteAnon
ReplyDeleteI have deleted your post but I have copied it and will address your points regarding Donna William's diagnosis and the validity of my opinion as a main blog entrance. Thanks for your interest.