Wednesday, July 1, 2009
Roger Kulp published on Age of Autism!
I see that a man with autism, Roger Kulp has had an article published on the AoA webpage I posted in the comments section congratulating Roger. Roger is a frequent poster here at autism's gadfly. He has a lot of good ideas about autism and is thankfully among the slowly growing number of "internet autistics" who have had the good common sense to reject the neurodiversity ideology. Roger is another on the spectrum who does not need any stinkin' neurodiversity. Now that I offered Roger my congratulations on AoA, I offer them here also. I wish I could help Roger find the doctor he needs or help him get to Cleavland, unfortunately I am not in a position to do these things. Read his article and enjoy.
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So there are about what, 4 internet autistics that see ND for the sham it is now? Over on my blog I've been discussing ABA, ND and other treatments in general. I hope to keep growing!
That’s good- I also noticed that Roger commented on D Kirby’s recent piece on adults with autism. I am glad Roger is getting some suggestions. Something that occurred to me though, times and times again with adults receiving advice- it’s not that easy to put them into practice for many potential reasons. I have been there with my son too. At the earliest stage, when we started to suspect something was not quite right, I received a lot of (good) advice form his nursery headteacher who became a very dear friend, later also involved as a volunteer in our home programme. At first, I could not cope with any of her advice, in fact they made me angry. They made me cry too. I thought if I did not know about her concerns, we would have remained in peace and happier for longer and I would have just rejected anyone suggesting a problem. I was in tune with my son all along, even if people could not get in tune with him that easily, I was, so what was the problem really? (BTW for those who wonder,that was prior his regression. At the time of his regression, I knew there was something very very not right, before, he was just on the spectrum without obvious health problems). But if I had followed what she had said right from the start and fully we would be at a different place today. I am certain of this. She was right all along, she was also right in her criticisms of our home programme (Son-Rise), but this too, I could not see and take on board then. I think people take the advice they are ready to receive only.
I have been involved in the care of 17 adults (Biomedically- J. with a doctor and with a dietician). One person managed to do the diet, nothing could be implemented by anybody else, either because they are in various institutions or alone struggling and coping the best they can with life.
I wish you the best Roger, I am certain there are lots of avenues that can be of benefits not just for you, and yes you are right many adults have health problems like you have, especially with regard to their immune system.
Aren't you offended by it? He says we are not truly disabled!!!
Jake: I have autism with a speech delay, rather than Asperger's which comes with a speech delay. While Roger may have been talking about you and others with Asperger's, he was not really talking about me. At 2-/1/2-3 years of age I was probably indistinguishable from a low functioning autistic.
I don't agree with Roger that all people with Asperger's are not truly disabled. However, I question how disabled many persons who say they have Asperger's are such as Ari Ne'eman and John Elder Robison.
Jonathan,
I had a speech delay, too, not as severe as yours, but it was clinically significant. My pediatrician referred me to speech and language specialists. I have the original report from my hospital saying I have a speech/language delay. I wrote about it in my letter to Newsweek that both you and Mr. Kulp are aware of. Yet, I later received an Aspergers diagnosis. You were also in special ed. for around the same number of years I was. I also assumed you had Aspergers not just because of my own circumstances but because that is what the reporter said during your NPR interview. I am sorry if I have spoken incorrectly about your diagnosis, though the latter reason for my assumption was due to what I heard on NPR, making that the radio's fault, not mine. Whether or not you have been re-diagnosed with Aspergers like I was is not for me to judge, though evidently you have not.
I am empathetic to Mr. Kulp for his horrific condition, but his offending a subset of people with autism on AoA is not excused by that. Nothing is. This has happened on several occasions now. AoA is so desperate for anti-ND autistics it will even go so far as to allow comments and posts from someone who puts others down. That is not excusable either.
While I tend to agree with you about people like Ari Ne'eman probably not suffering from autism as badly as we have, I really feel that is missing the big picture.
The real problem with Neurodiversity isn't that its governed by people who maybe higher functioning than us, let alone those who cannot speak for themselves. The problem is that it is run by minority afflicted with autism attempting to impose its views and agenda on EVERYONE with autism, kind of like how the Bolsheviks took over Russia after the Tsar abdicated. Putting down everyone with Aspergers just because the majority of autistic NDs have Aspergers is prejudiced, mentalist, and wrong.
Jake the person interviewing me for the radio show made an error when she said that I had Asperger's, the interview was done over six years ago. At one time, though never diagnosed with Asperger's per se, I thought of myself being Asperger's like. But I had a speech delay at 2-1/2-3 which is usually what differentiates HFA from Asperger's so based on what the diagnostic criteria is I would most likely be considered HFA rather than Asperger's.
I agree that Asperger's and very mild ASD's can often be disabilities and should never be trivialized.
I am hoping to have more comments from those who are anti-neurodiverse. Jonathan was wonderful to email me his links and I see links here that are worth checking out :) But I'd like to hear more from others. To view what I've written in my column so far you can go to www.examiner.com/x-10560-Tulsa-Special-Needs-Kids-Examiner.
For the record, I have Asperger's- diagnosed. My oldest has Asperger's, diagnosed and my youngest has PDD-NOS also diagnosed. We were diagnosed in Boston, MA. If that matters to anyone :)
The "media Aspies" are not the true representation of those who actually have AS; those who actually have AS are disabled. Most people with AS do no function like the media Aspies who, if they have AS at all, are borderline AS. So, it isn't fair to make assumptions on media Aspies because most people diagnosed with AS are quite disabled.
Asperger to me becomes a disability when there is a clash between what is needed/expected and what the person can give within his/her existing environment and range of circumstances. In a way, it depends on context and points of view; it’s relative. What is needed itself is subject to debate. Is chatting to others conventionally for example, needed? And if so for whom and why? It’s not fully tangible even if the difficulties experienced by people with AS can be identified and defined. I can take a millions of examples to illustrate how specific accommodations and greater knowledge of the condition can enable everyone to work in greater harmony. It can easily be done, it only requires understanding and motivation.
Because of this subjectivity, there will be some discrepancy/disagreements between those who in their environment do well and those who do less well. And of course, a same person might do well at a time of their life and less well at another time. The environment is not solely support, understanding etc.; it is also an environment that matches the genetic sensitivities of the person.
Autism by contrast is a disability irrespectively of the level of support, because there will always be significant overall differences in the person’s functions or “outputs” that prevent the person to function optimally without accommodation or support.
Who should represent autism? Surely people with autism across the spectrum should contribute as much as possible in the information/ awareness/ needs/ regulations and what should be disseminated to a wider audience and to policy makers. But this must be with some level of support from NT-autism friendly people, simply because related to the ASD condition, are difficulties that preclude full accuracy and global understanding (not solely shared by ASD people I must add).
"Autism by contrast is a disability irrespectively of the level of support, because there will always be significant overall differences in the person’s functions or “outputs” that prevent the person to function optimally without accommodation or support."
AS is as well. The only difference between AS and autism is that those with AS have better verbal and cognitive abilities. Many psychiatrists think that AS is grossly overdiagnosed.
I think your definition of AS is what you consider the "media Aspies."
Not being able to have (or want) small talk is not a manifestation of only AS, many other disorders share that symptom.
AS includes all aspects of autism, except good verbal ability: rigid thinking, concrete thinking, taking things literally, obsessions, rituals, lack of empathy, no understanding of social situations, lack of sense of self, sensory problems, etc.
I see many people/know many people diagnosed with AS whose only symptom is not being able (or like) small talk and I know they do not actually have AS. There are MANY reasons why a person may not like small talk, but lately it seems that the AS label is slapped onto all of these people.
I have wondered for a long time just how disabling Aspergers is and in what ways. I admit, there have been times that I hardly thought of it as a disability because of some of the descriptions of it that I heard about which seemed quite mild, and also due to hearing about the ones publicized.
But a long time ago, I saw descriptions which made it seem quite severe and wide in the scope of impairments it can entail, which is what got me to think I may have had it. But when I heard about a lot of the less severe cases and descriptions, that put strong doubts on my thought that I may have it. So, I've kinda thought lately that there may be a lot with AS with many disabling problems, and also a lot who are very mildly affected, but I'm not sure what the relative amounts of each are. I'm glad I'm finding out lately that many of the publicized ones with AS aren't what most with AS are like.
Thanks Stephanie-
Let me clarify, I was not defining AS on an ASD blog as I do not see the value of telling people here what AS is. Also, we have to have a balance view, yes it’s is not media Aspie as you call it, but it is not all bad either as far as AS is concerned.
I have a lot of friends with an AS diagnosis and I can guaranty I know what their daily struggle is. I am not taking this lightly. But I also know that a lot can be done to easily help them and that’s not about a cure, that’s about knowledge, support and understanding and giving them better opportunities to a true inclusion at every levels of our society.
I have not commented back again in response to your post on another blog as I actually only realised where I commented and did not actually intended to when your replied to my post, but as a mother of a more severely affected autistic child, I know that to meet people who accept my son totally changes his well being, the one of his family and his chances of success. A very simple change in other’s opinions and attitude can make a huge difference to people like him, and to people who are more or less affected than him.
Jake,
Neurodiversity is run by Pharma.
The actual people amongst ND who are on the spectrum are merely pawns who have been led to believe that defending Pharma makes sense. They aren't bright enough to understand that Pharma caused their disabilities.
The leaders of ND are all normal (albeit psychotic).
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