Ransom Notes campaign

NYU Child Study Center has an awareness campaign called 'Ransom Notes'. Here's what I emailed to them in reply.

On your webpage, I noticed the 'Ransom Notes' awareness thing, with stuff about ADHD, Asperger Syndrome, Autism, Bulimia, Depression and Obsessive-Compulsive Disorder.
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I'm more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like 'being kidnapped'. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I'm fine.
Portraying conditions like Bulimia, Depression and Obsessive-Compulsive Disorder as kidnapping a child is a vivid analogy for how it really does feel to have those conditions (I'm basing this off of both personal experience and personal accounts I've read by other people). Portraying conditions like Autism, ADHD and Asperger Syndrome as kidnapping a child is offensive to those affected by those conditions, and encourages others in an erroneous and harmful perception of them. That's not the kind of awareness I'd like. In fact, treating fundamental brain differences like they are separate from the person and a terrible thing is part of the reason I have PTSD (I experienced abuse in two very distinct settings, one of which was well-meaning but very harmful abuse from my teachers, who thought my differences were something wrong with me).
Worse, your descriptions of what the supposed 'kidnappers' are making the ADHD, autistic and aspie kids do is offensive as well. ADHD behavior is only a problem in certain circumstances. Studies have shown that if a teacher is highly engaging, less children meet behavioral criteria for ADHD - because ADHD kids are not incapable of paying attention, they just need more stimulation. And the idea that it's a detriment to others is a concept frequently used to justify treatment that harms the recipient or at the very least doesn't benefit them. It's justified with abusive behavior, but it is not justified when the person is merely acting annoying or weird.
Regarding the ability to interact with others, I have yet to meet a single child, with any disability, who was incapable of interacting with others - including many much more disabled than any autistic kid. I know one boy with severe CP who can barely move and can't speak, but he looks at things and groans to communicate. Interaction is a two-way street - he can't interact with someone who ignores him, but that's not really his inability. And social isolation, firstly, is in the eye of the beholder. It's likely in the month of December I will only spend one day with anyone else my own age. But I'm not lonely - I don't need interaction that much. Other times I do want friends, but no one wants to be friends with me. That is not a social impairment on my part, but their own intolerance of diversity - after all, openly gay teenagers often have trouble making friends too.
As for caring for yourself, who in our society really is independent? Apart from hermits living off the lands (ironically, many of them are probably on the autistic spectrum) no one is. But only if you're dependent in the 'wrong' way does it ever get noticed. My father can usually fix his own car. Most people can't, so they hire a mechanic. This is not considered a disability. Most people can tell time within about an hour or so, and can certainly tell when mealtime comes. I can't (in the absence of external cues). This is considered a disability. In another society, however, it might be the opposite.
Ettina

Who Can Speak for the Spectrum

Very often when an autistic person makes some statement about autism (contradicting what the autism establishment wants to believe) they are told that they 'don't speak for' X category of autistics. I would give a qualified agreement to that.
I know my own mind. I also know the behavior of people I interact with and what they say about themselves or the behavior of other people. I can make inferences from statements and behaviors about another person, but I am not capable of reading their mind. I can't know for certain if my inferences are correct, or if other people's statements are correct. I know intimately what my particular kind of autistic mind is like, but I don't know anyone else's mind, except what they tell me or I infer from their behavior, which is not infalible.
The same applies to everyone else. If you've decided somehow you know what someone else's mind is truly like, then without knowing any more information I can say you are wrong. You know what you observe or what they say. What they say may or may not be accurate, your interpretation of their behavior may or may not be accurate.
My inferences about other people, though fallible, can be useful. I infer from my autistic friend's smiling and flapping and tensing that he is excited, when I ask if he is he replies 'oui' (yes), so I assume he is excited at those times. I don't know that, the way I know if I'm excited or if he's flapping his hands or said yes when I asked if he was excited, but the assumption has so far been verified. People do this all the time - make inferences about other people's mental states from their behavior and what they communicate about their own mental state.
A complicating factor is differences in behavior patterns, mental states and the relationship between them in people with different kinds of minds. Every person is unique in these factors, but everyone has more in common with some people than other people. Some of the statistical outliers have been grouped into various diagnostic groups such as LD, ADHD, autism, OCD, etc, etc, based mostly on behavior with some diagnoses including self-report of mental states (eg OCD obsessions can only be determined by self-report). If these diagnostic categories have any validity at all, they indicate the individuals within one category have more in common, in some aspects, with each other than the general population. This is true even for broad categories like autism. I wrote a post awhile ago about this, called It Really is One Syndrome (scroll down a bit).
Considering all this, a person from a particular diagnostic group who provides information about their internal mental experience and their inferences about what aspects of this may be characteristic of that diagnostic group doesn't represent everyone within that group. But someone who only has observation of behavior or physical measurements to report, without any personal experience as an individual in that diagnostic group, is even less able to represent that diagnostic group. This latter group includes the vast majority of parents and professionals.
In addition, a person's opinion on controversial issues relating to that diagnostic group does not necessarily indicate how useful their statements about that group really are. We must not have the double-standard of accepting what certain people say about a diagnostic group while rejecting other people's statements on grounds that also would, if applied equally to all, reject those we accept. For example, it makes no sense to accept what Temple Grandin says about autism while rejecting what, to choose a random example, Frank Klein says, on the grounds that he is high functiopning and doesn't know what it's like to be low functioning autistic. Both of them are verbal autistics living independendantly and fairly successfully who had a history of speech delay and have, from early childhood, shown significant autistic behavior which continues into adulthood.
[Edit: Is anyone actually reading my blog? The past several posts have had no comments left on them.]