Good News?

I just read an article titled Multidimensionally Impaired: The Good News (Journal of Child and Adolescent Psychopharmacology, volume 15, number 3, pages 510-519). It's about a follow up study of a bunch of 10 year olds diagnosed with Psychosis NOS (translation: It's not schizophrenia or bipolar, but they are nuts!)
At the end, they have two example case reports. Reading through both of them, I can see clearly how the psychiatric system has mismanaged them. It makes me sad.
Firstly, there's 'G', a girl described as having a 'good outcome'. And she does, no doubt about that. Her childhood had some rough patches, but at 17 years old, she was doing well in a challenging school with several friends, looking forward to college. But that doesn't mean the psych system deserves the credit.
Her problems started when she was 6 years old. Her family was going through some stress (they don't say what was actually going on) and she had poor social skills and was having severe tantrums. They figured she was just stressed out, but after whatever problem the family was having was over with, G was still having tantrums. She was taken to a child psychiatrist, who put her on haloperidol.
Now, this is the first thing I question. Was anything else tried before putting such a young child on such a risky medication? I've heard many people complain that psychiatrists (who, unlike psychologists, can prescribe medications) don't seem to try any other solutions before leaping to medication. Obviously, unless he's a really big fool, the psychiatrist wasn't giving haloperidol to help her with her social skills. It's become unfortunately common to use neuroleptics to treat aggression, especially in developmentally disabled people and children. These are risky medications, and even worse, you aren't dealing with the cause of the aggression (except in the rare cases that it truly does seem to be a chemical imbalance). Just because the family stress is done doesn't mean it's done affecting G.
Anyway, G soon developed dyskinesia and was taken off haloperidol. She did fine for the next 2 years, and then they started her on risperdal for motor tics. (This is even worse. Unless it's severe, which it clearly wasn't for G, motor tics are just an annoyance. Not worth risking really nasty side effects. Besides, her motor tics could have been caused by the haloperidol she took at 6 years old.)
It was when G was 10 that her worst problems started. She started hearing voices criticizing her while she was in school and as she did her homework. Her medication was changed to trifluoperazide (from the patient information sheet, it sounds like yet another neuroleptic), but that didn't work. These voices were so upsetting that her parents pulled her from school. At 11 years old, she was admitted to a psychiatric hospital (the one the authors worked at) with explosive outbursts and unusual fears, as well as auditory hallucinations. Her medication was stopped for observation, during which time she was obviously not psychotic. She was, however, inattentive, distractible, and impulsive, so without looking for any other reason she might have trouble paying attention, they diagnosed her with ADHD and Psychosis NOS. The latter was said to be 'in remission' even though the symptom that lead to that diagnosis, the auditory hallucinations, were still ongoing. She was discharged with a prescription for methylphenidate, which she stopped taking soon after. The auditory hallucinations continued until a month after discharge, then stopped and have never recurred. At 13 years old, she had a labile mood but no other problems.
It's unclear what effort they took to find out G was still hallucinating. Certainly, they didn't know until G told them when she was 13. It's interesting that G's big problem was nasty voices, but that's not actually why she was hospitalized - she was hospitalized because of her outbursts and fears, which were most likely an effect of her hallucinations. Clearly, they failed to help her with those hallucinations. If anything, they helped her solely by getting her off neuroleptics, which in rare cases can cause hallucinations. Considering that she stopped her stimulant medication without big problems ocurring, it's pretty clear that med was probably unnecessary. I wonder about her school. Could it be that she was under a lot of academic pressure, and she reacted by hallucinating? Indeed, she might have been hallucinating at 6, too, and that's why she had her tantrums. And regarding her ADHD diagnosis, she was under so much stress at the time - even if just from being hospitalized and hearing nasty voices, and not also the cause of the nasty voices - that I put little faith in that diagnosis.
Now, G turned out fine. I suppose if she's under more stress later on, she might have another episode (in which case, I think you could make a good argument that she needn't bother seeking psychiatric 'help'), but at last report, she was doing great. Their second case report wasn't so lucky.
'B' was first seen as a two year old boy with speech delay and disruptive behavior. (They don't say what kind.) At 6 years old, he started having auditory hallucinations when stressed. He was hospitalized at 6 and a half years old, as a hyperactive, self-injurious boy with auditory hallucinations. At 11 years old, he was living in a residential treatment center. Methylphenidate had worsened his symptoms, and thioridazine and haloperidol hadn't had much effect. He was still on haloperidol.
B clearly has an early history of being institutionalized. That poor kid. Many 6 year olds are scared to have their mom leave them at school during the day, and when he's already under a lot of stress, he has to stay away from home - at an institution. And he probably guessed it was because of his behavior, so he probably blamed himself. They don't say when he started living in the residential treatment center, whether he went straight there or got to come home for awhile, but by the time he was 11 years old, he was living there.
He was referred to another hospital (the one the authors worked at) at that age with the following description: "aggressive behavior, extremely erratic and unpredictable relationships, extreme fluidity in functioning and unpredictable aggression, as well as poor reality testing, with distorting of experiences and hallucinations." The admission exam only showed anxiety. His haloperidol was tapered off. In the hospital, he was "very affectionate and clearly tried hard to cooperate" but got upset at shift changes and when the other kids teased him. He was sent back to the residential treatment center with the diagnoses of Psychosis NOS and ADHD and a prescription for methylphenidate (which hopefully had a better effect than the last time he took it).
That referring description, combined with the vastly different description of his behavior in their hospital, worries me. Either the referring doctor was greatly overrating B's problems, or he acted vastly different in the hospital than the treatment center. The first one suggests similar issues as my teachers had with me, overreacting, pathologizing and exaggerating the slightest thing. The second suggests either that he was really reacting badly to haloperidol, or that the treament center was a really rotten place for him. It's kind of odd that they gave him the same medication he'd already had an adverse reaction to earlier - as well as the note that this is the same meds and dx's that G got. What is it about them and ADHD + methylphenidate?
At 13, B was still in the residential treatment center, on methylphenidate, clonidine and carbamazepine. He had less ADHD symptoms, but he'd set two fires and was often caught cheating and stealing. He was not psychotic. Between that time and when he was 15 years old, he was transferred to a group home and then back to his home. He set a fire in the kitchen and was repeatedly kicked out of school for fighting. By the time he was 17 he'd vandlized, set fires, shoplifted, and assaulted (getting 2 years probation). He'd been hospitalized for 2 weeks because of self-injury and then was sent to another residential treatment center. He was on methylphenidate, guanfacine and buproprion. He was no longer affectionate and trying to please, instead he was explosive, impulsive, avoided eye contact and "spoke in a monotone voice, except when he argued with the adults in the room". He was diagnosed with ADHD, ODD, Psychosis NOS (in remission) and marijuana abuse. They were discussing putting him on a mood stabilizer and a neuroleptic.
B goes downhill from the nice but troubled 10 year old. By in large, all the adults - his mother and all the myriad of doctors - have been unable to help him. He got back home, but he was too disturbed. He seriously hurt someone and set fires that could have hurt people. He's got possible autistic traits that no one seems to have acknowledged or tried to understand (he had speech delay, he didn't like change, he avoided eye contact and he spoke in a monotone). He no longer reaches out to people like he used to - presumably he's learnt it doesn't help. He's probably been badly damaged by the long-term institutionalization he's gone through. Just about nothing's gone right for him, but at least he didn't get a jail sentence (after all that institutionalization, jail would not have helped at all). Those new meds probably won't help - none of the others did. I don't know if anything can help him now, it's pretty late.
So what's the good news?

What's the Point of Inclusion?

If you ask most advocates of including developmentally disabled kids in regular classes why these kids should be included, they'll say it's so the child can be friends with normal children.
But does this actually happen?
In the European Journal of Special Needs Education, volume 19, issue 3, pages 317-330, Monchy et al studied 21 mainstreamed kids with 'behavior problems' - 9 with PDD NOS, 1 with ADHD, 3 with PDD NOS and ADHD, 1 with Tourette Syndrome, 2 with Asperger Syndrome, 1 with Reactive Attachment Disorder, and 4 with no specific diagnosis. They categorized these kids and their classmates as 'popular' (liked by the majority of the class), average, ignored (not liked or disliked by most of the class), controversial (liked by many and disliked by many) and rejected (disliked by most of the class) based on children's nominations of their top 3 favorite and top 3 least favorite classmates.
Among the neurotypical kids, 27% were popular, 31% were average, 18% were ignored, 6% were controversial and 19% were rejected. Among the behaviorally disabled kids, none of them were popular, 8 (38%) were average, 3(14%) were ignored, none were controversial, and 10(48%) were rejected. So in other words, about half of the disabled kids were actively disliked by most of their classmates. Around two-thirds were in the two categories that could be considered 'social failure'.
For mainstreamed kids with Down Syndrome, it was better, but still pretty bad. An earlier article in the same journal as the above one (in volume 14, issue 3, pages 212-220) found using the same method that 17% were popular, 26% were average, 52% were ignored, none were controversial and 4% were rejected. For these kids, a little over half could be considered social failures, although most were not actually disliked.
So, for a normal-looking child with unusual behavior, in a regular class, about half of them will be disliked by most of the kids (and probably bullied), and only about a third will be accepted by their classmates. Down Syndrome kids are actually less likely to be actually disliked than neurotypical kids, but about half of them will have few friends in their class. Even for kids with more 'acceptable' disabilities like Down Syndrome, social failure is quite common.
So what's the point of inclusion? As it is now, inclusion is failing to achieve the primary goal for (assuming these numbers generalize to other conditions) the majority of developmentally disabled kids. Either we need to fix it, or try something else.

Religion and Morality

I remember reading a story by a Christian woman who had an ADHD son. At one point, she said that she'd read that ADHD kids were more often abused, and she could believe it, because if it weren't for her religion, she'd have abused her son.
As an atheist, I was deeply offended. If that's really true of her, I'm glad for her son's sake that she's a Christian. But I don't need to be afraid that some diety will punish me in the afterlife to avoid hurting a child. All I need is an awareness of how my actions will affect that child. The thought of breaking that child's trust, betraying that child and the pain it would cause, is enough to make me think I shouldn't abuse that child.
There's this stereotype among many Christians (and probably people of other religions) that you must be religious (preferably the same religion as them) to be a caring person. I could point at the religious people who do terrible things - the sexually abusive priests, the people who ran the Inquisition, etc - but many people claim those aren't really doing what God wants. Instead, I point to the people who don't sin, who in fact do good, but only because they want to be in heaven instead of hell. How moral is it really, to act good only for a reward?
If I knew for a fact that I'd go to hell if I didn't torture and kill a child, I would hate the God who set that rule, and feel that the moral thing would be to disobey Him. (I can't promise I would disobey him, but my idea of an ideal person certainly would.) But in the Bible, God allegedly told someone to kill his favorite son, and the man was about to carry it out when God said the equivalent of 'just kidding'. God was 'testing this man's faith', apparently, and the lesson is to trust that God knows best even if you really don't like what he's telling you to do. I'm not willing to give anyone that kind of power over me. (Certainly not the ordinary human beings who claim to speak for God.) I don't think someone so easily led into disobeying their own beliefs is a good person.
And those people who avoid doing something they want to do only because they think they'll get punished - they often don't really avoid doing it. They do it in secret, or they do borderline things which they excuse by emphasizing the differences (or simply deny). The first is not feasible if you really believe you've been told what to do by an omniscient being, but the second option is very likely to be done by devout believers who obey only because of heaven and hell.
So maybe that ADHD boy was being abused after all. Not by being hit or made to do sexual acts, but by his mother's looks, her comments, her rules, her body language. If a child has been taught, by their parents' behavior, that they are bad and don't really belong in their family, then they have been abused - even if such teaching is not deliberate. And you can't avoid that abuse just by thinking you'll be punished for it. You avoid it by cherishing your child, by working with yourself to avoid feeling so angry with them, by learning to enjoy being with your child.
Sadly, it's considered normal for parents to dislike spending time with their children. My father is excited when he has time off work to look after us. My mother misses us if she goes away to a conference without us. But recently I saw a joke in which a 6 year old boy who had two older brothers was asked what his mother did all day since he entered school, and said 'cartwheels' (turning cartwheels out of joy, because she doesn't have to look after him all day anymore). Children are considered a burden, worthwhile mainly because we grow up into 'real' people and can look after our parents in their old age. Parents say 'I wish you have a child just like you someday, so you know what it's like' and mean it as a curse instead of a blessing.

DSM criteria on my website

I've started putting DSM criteria on my website, for the following two reasons:

Awhile back I tried to find older DSM criteria (I believe DSM-III-R but can't remember exactly) for some conditions and discovered that the only DSM criteria available on the Internet, that I could find by googling, was DSM-IV. History is important, and I'd like older DSM criteria to be publicly available so people can see the history of the DSM.

Recently I happened, on impulse, to photocopy a substantial chunk of the DSM-III and DSM-III-R while I was at the Health Sciences branch of my local universary's library.

So anyway, on my page I've put up the DSM-III and -III-R criteria for conduct disorder, the autistic spectrum and ADHD so far, and linked to the DSM-IV criteria. I will do more conditions, and probably put up my own summaries of the changes in the criteria and what I think about that (for example, DSM-III had a category called Childhood Onset Pervasive Developmental Disorder which was most likely roughly equivalent to DSM-IV's Childhood Disintegrative Disorder), as time goes on.

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

Is It Really 'Twice Exceptional'?

I've been looking through the Hoagies' Gifted page about gifted disabled kids. A common term, used by them as well as many others, to describe such people is 'twice exceptional'. Besides the non-specificity of this term (it applies equally well to multiply disabled people, such as deaf-autistic, blind-CP, etc) I have another problem with this term.
It assumes the person has two distinct differences. This is fairly accurate for gifted people with disabilities that aren't based on how you think and feel, such as blind gifted people or gifted people with solely physical disabilities. But is it really accurate to describe a gifted-LD, gifted-autistic, gifted-ADHD or any other gifted and developmentally disabled person as 'twice exceptional'?
On one online IQ test, I scored 158. In general, I tend to score in the 130s (the cutoff for giftedness is generally 130). I am also diagnosed with PDD NOS, a form of autism. So, therefore, I must be twice-exceptional, right?
Except that I've only got one brain, and there is not an 'autistic part' and a 'gifted part'. Except that I'm gifted in a characteristically autistic way. Except that my gifts are common among autistics, and my difficulties are common (in a less severe way) among gifted people. Except that I don't think giftedness and autism are really very separate at all. Except that my difficulties are caused by the exact same underlying traits that cause my gifts.
For an example of the last, and most important, point: I am extremely creative. I am also very disorganized. I've found that creativity is considered a common trait in gifted people, and disorganization is common in autistics (where it is generally subsumed under the broader category of executive dysfunction).
Here's the thing - both are caused by the same trait. I call myself a tangential thinker. This means that my thinking is like a mental web, with many interconnected ideas, and I easily wander off into various tangents. This causes creativity in that I find myself unexpectedly connecting ideas in ways most people wouldn't connect them - thinking of how things connect and putting them together in distinctive ways, and looking at things from unusual perspectives. This also causes disorganization because I don't stick with one thing the 'right' amount of time, instead sticking with some things too long and others too short, I wander from objective reality into ideas, I wander into the intricate details of a tangential topic and I do not naturally think in sequences. From my perspective, they're really the same thing. But the 'positive' results of tangential thinking are labeled creativity and subsumed under giftedness and the 'negative' results of tangential thinking are labeled disorganization and subsumed under neurodevelopmental disability.
Most gifted-developmentally disabled people are probably like this - in reality, many traits of both conditions are the exact same trait in a different circumstance. A common example is visual thinking. Many visual thinkers have trouble with language, especially with reading, while being gifted at math, mechanics, drawing or other visuo-spatial activities.
PS: I also think that for developmentally disabled kids, giftedness shouldn't be only having a full-scale IQ over 130. In the American Journal of Medical Genetics Part B, volume 134B, pages 104-109, they describe a girl with a full-scale IQ of 99 whose subtest scores ranged from 5-18 (normal is 7-13). I think kids like her are gifted disabled, too, despite having a nongifted IQ.

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.]

More Listservs

Here is a continuation to my earlier post listing listservs I belong to.

AutAdvo
AutAdvo is an autism advocacy group. This is the group I generally go to when I need to reassure myself that I'm not alone in fighting for acceptance of diversity. Like many lists, people who disagree with the primary viewpoint are sometimes flamed, but one special thing about this list is that, unlike many other lists I'm on, someone usually steps in and says that though they don't agree with that person's viewpoint, flaming them is not a good thing to do. There is a general norm that encourages rational discussion instead of personal attacks.
AS-and-Proud-of-it
This list is similar to AutAdvo, although it appears to be younger. I haven't been that active in this list however.
AutismSpectrumTreehouse
This group differs from AutAdvo and AS-and-Proud-of-it mainly because it's specifically for those on the autistic spectrum, while the other two welcome parents and others as well.
AC-GLBT
AC stands for 'autistic and cousin' and GLBT stands for 'gay, lesbian, bisexual or transgender'. As the name suggests, this group is for autistics who are also different in sexual orientation or gender identity (or both). I joined it because I'm autistic and asexual.
ADD
ADD stands for attention deficit disorder (I don't like the word disorder). This is a fairly small group for ADD and learning differences. I was active in it awhile ago but kind of got sick of seeing constant uncritical acceptance of medication and not knowing how to respond.
Coffin-Lowry
Coffin Lowry Syndrome is an X-linked condition causing developmental delay and various physical difficulties, the most distinctive of which are drop attacks. This list is very inactive. I asked to join a more active list, from the Coffin Lowry Syndrome Foundation, but was rejected by a woman who seemed to think I was 'naive' for thinking kids like her son actually were valuable people.
Cri-Du-Chat Syndrome
Cri du chat is french for 'cat's cry'. This condition is caused by a 5p deletion and is characterized by developmental delay, a distinctive cry that resembles a kitten's cry, distinctive appearance and various other traits. This group isn't one of the more progressive groups, but they haven't been nasty to me either. I was thanked for giving advice to a woman whose daughter was upset about being different.
Iwill continue later.

Losing Diversity

I've finally decided what my opinion is about dietary treatment for phenylketonuria(PKU).
Phenylketonuria is a recessive genetic condition in which a person lacks the enzyme for digesting phenylaqlanine, a substance present in many foods. If they don't eat much phenylalanine, this condition has no effect, but if they eat phenylalanine during infancy and early childhood, it affects their brain development. Phenylketonurics fed a normal diet until adulthood are moderately-profoundly developmentally delayed and have distinctive behavioral traits including autistic traits. Since babies are screened at birth for PKU and given a low phenylalanine diet, In some regions the youngest people with untreated PKU are in their 40s.
I used to have an obsession with endangered languages. I came across one language, the name of which I can't remember, which used to be spoken by this one group of Australian native people. The last native speaker of this language died sometime before I was born, maybe in the 1960s? All that is left of that language are tapes of that man telling two traditional stories in his language. I wanted to learn that language, but after awhile realized that there wasn't enough known about it for anyone to become fluent in it ever again. That knowledge was gone, and with it, a central part of that culture.
Most people assume that there isw no value in having people who are severely delayed and autistic. I disagree. And each developmental disability brings a unique experience of the world. People with untreated PKU see the world in a unique way, just like people who know a certain culture see the world a certain way. I think of untreated PKU as similar to a moribund language - one which is not being passed down the generations anymore, and will soon be dead. Of course it will not be lost forever. The genes for PKU are still around. But soon no one will have that kind of mind, at least in certain regions. And that makes me sad.
I think about studies I'd like to do in how people with untreated PKU think and feel this sense of urgency, because if I wait too long, they'll be gone. I want to understand those people. I don't want them to just fade into history, the only thing remembered about them being how 'defective' they were.
Now, I'm not saying that no one should give a PKU baby a low phenylalanine diet. What I'd like to see is people making that choice without viewing untreated PKU as a horrible thing, but instead as another way of being. Right now, it probably isn't really a choice. If I had a PKU child and didn't treat them, how long do you think that child would stay in my custody? After all, people have even lost custody of ADHD kids because of not giving them Ritalin.
Ettina