4 ms·
As a fellow sibling of a severely autistic individual, I concur on all points. The word, which connoted a depressingly debilitating constellation of symptoms i
by mapt 13y ago
As a fellow sibling of a severely autistic individual, I concur on all points. The word, which connoted a depressingly debilitating constellation of symptoms in cognition, communication, and perception when my sister was diagnosed, has been redefined year by year inside and outside of the psychiatric community until it means very little, subject to self-diagnosis based on perceived social anxiety among high-performing, high-IQ individuals who are able to initiate conversations, appreciate comedy, lie convincingly, have relationships, and master smalltalk.
She will never take part in the debate about whether an 'Aspie' gets to call themself 'ASD' or 'Autistic' or 'HFA', because she is not able to understand or speak about such topics; She will never be able to campaign against the 'neurotypicals' efforts to create a cure or prevent the condition from occurring. She will never be able to read how Jenny McCarthy cured her son of his seizure disorder or decide whether it constituted autism or speculate about thiomersal.
People like her are not able to speak up for themselves, and they've been quietly robbed of a word for their conditions. In some circumstances, this is extremely problematic; Seeking help from the state hinges on such words. The 24/7 caretakers that have been required since my family reached the breaking point has only been possible with a lawyer and a series of lucky breaks in state funding & local politics - with 2013's definition of 'Autism', the planets might not have aligned the same way.
Autism was never a terribly precise syndrome. Mental health is full of '6 out of 10 symptom' checklists; I like to visualize them as 'constellations' rather than clouds, because they exist on their own - we just draw the lines along things that seemed to be clustered. It is the particular looseness of the Autistic Spectrum that's allowed linguistic creep. I don't assert that early-childhood regression, severe cognitive disabilities, barely-lingual, no eye contact, compulsive behaviors, self-harm, stimming, problems with loud noises, and seemingly random inappropriate decisions like disrobing or running into traffic or poking a stranger or trying to enter an interesting-looking house are the canonical Autism. However, they constitute something, something almost completely different than many of the people I meet who claim to be autistic, and the language has progressively failed us in description.
- mapt 13y agoI would add that facilitated communication is one of the most tragic things I can imagine - equally so for the family and the facilitator who realizes they've been speaking the whole time. The picture accompanying the story is a textbook FC pose - we can only hope that's not what's going on. One almost wants to leave a long-time FC believer alone - delusion may be better than the emotional footprint of a debunking. Autism itself is emotionally brutal enough; If I learned I'd been helping my sister communicate desires and express opinions and write poetry for years as some kind of sick puppet master, I'd kill myself.
- d0mine 13y agoDo you mean the son haven't completed the courses but his farther (unaware of it) done it for him as in the counting horse debacle http://en.wikipedia.org/wiki/Clever_Hans http://en.wikipedia.org/wiki/Clever_Hans It would be sad.
- dsrguru 13y agoFirst of all, I don't mean to insult you or your expertise on the subject. I know very little about autism spectrum disorders and nothing about this "facilitated communication" debate. However, that Daniel's parents are unconsciously inventing his written voice and, therefore, inventing virtually everything we know about his cognition seems to be a huge assertion to make with very little evidence. The article says the parents would "hold his hand while he spells" (emphasis mine). I could see parental bias (a la ideomotor effect) playing a role in guiding the subject when the answer is one choice out of several discrete options, but it seems impossible for that kind of placebo effect to play out in spelling words, where the sequence of letters would have no meaning to the parents until a word or morpheme was already complete or almost complete, let alone sentences. Has research indicated that facilitated spelling can and, as you suggested, normally does just result in the parent talking? I really hope the answer is no...
- jacalata 13y agoIt is certain that in the vast majority of cases, the parent/facilitator is entirely imagining the input from the subject. For instance, experiments have been done where a 'facilitated' subject who was apparently capable of complex conversations through facilitation was shown a simple object (eg an apple) where the facilitator could not see it, and then the subject was unable to name it through the facilitated communication. The APA and most psych bodies pretty much denounced it as bunk in the mid 90's (see http://www.apa.org/research/action/facilitated.aspx http://www.apa.org/research/action/facilitated.aspx). Studies that find it 'works' tend to avoid lab settings and 'overly controlled settings', similar to the studies of working telepathy. While it is not impossible for any given instance of facilitated communication to be actual communication, it is irresponsible to believe so without some pretty solid verification given that even proponents of the technique admit that in 'many' cases the facilitator was doing the communication. I believe that the most recent APA stance was that facilitated communication should be actively avoided.
- DanBC 13y ago> Mental health is full of '6 out of 10 symptom' checklists; Yes. Normally they have to be stable over 6 months. They also have to be affecting the person's life significantly. It's very frustrating hearing people read DSM on the various personality disorders and saying "lol that's Bob" or "look, I have most of these", and misunderstanding the severity of the symptoms described.
- Wingman4l7 13y agoAnyone who doesn't have a background in psychology and self-diagnosed themselves with the DSM isn't someone that can be taken seriously anyway.