Hammurabi’s Note
December 8, 2007 by Do'C 
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HUNDREDS OF GROWNUPS HELD HOSTAGE BY BIGOTRY
Fake Ransom Note
The following comes from the NYU Child Study Center’s “Ransom Notes” public service [sic] campaign.
Click the image to see a larger version.
Hammurabi’s Note
A Real Note
A very recent note from Ari Ne’eman (President of Autistic Self Advocacy Network), makes it fairly easy to understand why a campaign like the one from the NYU Child Study Center would be offensive to autistic people.
This campaign, which is expecting over 700 million impressions over the next four months, is highly inaccurate and spreads classic stereotypes against individuals with disabilities. There are a number of problems with the advertising campaign:
* The ads stigmatize people with disabilities by suggesting that we are a ‘detriment to ourselves and those around us.’
* The ads make people with disabilities feel shame and embarrassment.
* The ads contain inaccurate information: For example, while people with diagnoses of autism and Asperger’s often have difficulty with some forms of social interaction, we are not incapable of it and can succeed and thrive on our own terms when supported, accepted and included for who we are.
* The ads suggest that our true selves have been “kidnapped” by terrible “diseases” and that we need urgent treatment to become normal again. This “stolen child” stereotype has been associated with horrible abuses against individuals with disabilities, ranging from social cruelty to beating, electric shock and even murder.
* The ads do not inspire parents to bring struggling children to professionals for diagnosis and appropriate treatment but instead just make parents terrified that their children are doomed and destined to have horrible, sad lives.
* The ads convey an incomplete and inaccurate picture of the diagnoses they purport to represent; they fail to show the many strengths and abilities of the individuals with those diagnoses. They fail to show the opportunities for support, education and resources that the NYU Child Study Center should be offering to parents and individuals with disabilities.
Please read the rest of Ari Ne’eman’s note and call to action.
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Comment by isles — 9 December, 2007 @ 3:47 am
Ugh! How can professionals support that kind of message? It’s disappointing, although it fits right in with the “don’t mess with my epidemic” sentiment. I wish they’d take notice that they’re fueling their gravy train with harmful attitudes toward the people they’re ostensibly trying to help.
Comment by mayfly — 9 December, 2007 @ 8:10 am
My daughter is 10.5 years old she was diagnosed 7.5 years ago, but has been autistic since birth. I want her diagnosis changed. I want it done because I greatly fear autism advocacy organizations will be successful in stopping research which may benefit her.
This does not mean such organizations are bad. They do good in campaigning against such evil thoughts as “better dead than autistic.” or “An autistic life is not worth living.” They are often at the forefront of the fight for better services. (Some parents, a very small minority, have killed their autistic children claiming they did it out of mercy, and I here tell that some juries have seemingly agreed with this claim.) For their work on combatting such stupidity and yes sin, I can only say bravo and kudos. Where I differ from these organizations is that my child’s life is worth living because she is human, not because she is autistic. I fail to see any benefits her autism has bestowed upon her.
It has benefitted us, her parents greatly. Our marriage is so much stronger because of our daughter, and our views of what’s important in life has changed. I have changed from a materialistic agnostic to someone who tries to live a God-centered life. My wife has also made that journey though hers was much shorter than mine. Faith helps us get through each day. Perhaps it is a crutch, and there are certainly times when I think how crazy I am to believe, but I cannot deny its benefits.
My daughter is low-functioning. I used a term which advocates want stricken from any discourse on autism. There is no difference between autistics whose IQ is above or below 70. My daughter’s apparent IQ is between 28 and 51. I say apparent as I’m not completely confident in its measurement. There are studies funded by Autism Speaks looking at drugs used in the treatment of Alzheimer’s to see if they can help increase the cognitive capability of autistics. I am all for that.
I’ve been informed that nothing Autism Speaks does no good whatsoever. People have claimed that after examining the IRS Form 990 which lists all their grants, that not one, and I repeat not one is beneficial to autistics. Indeed, it is apparent that in the minds of the autism advocacy organizations that everything Autsim Speaks does is evil, EVIL, EVIL!!! Indeed people have tried to lay at the feet of Autism speaks all the violence ever committed against autistics, simply because they show a mother so desperate that she has considered a murder-suicide of her and her child. There is no logic to these claims. This woman dark thoughts before Autism speaks was even formed.
Do, I like everything Autism speaks does? I do not. I hear they have been tainted by some of the “mercury is the cause” folks. What I would love to see is an alliance between organizations campaigning for better services and treatments for autistics, and organizations working on ways to combat autism. I want a world in which I can be confident my daughter’s needs will be met in a loving environment once I can no longer take care of her, and I want research into the causes and possible ways of combatting autism.
I don’t see this happening anytime soon, because most organizations which advocates for autistics are also advocates for autism.
My daughter does not write her own blog. She cannot type, she doesn’t know whether a book is right side up or upside down. She is non-verbal. Attempts to use PECS have so far proven useless. Attempts to teach her sign language have been unsuccessful. Each sigh simply represents ” Give me what I want.” The way she expresses her self is to stand in front of what she desires and claps. Something she came up with o her own, but not something which can be generalized easily. She’ll also take a glass to someone if she’s thirsty. She’ll also bite the back of her hand, if we tell her to do something she does not favor. But then that is an assumption on my part, as she bites the back of her hand with no apparent antecedent as well. During these times she may attack us as well. She wears bicycle gloves during her waking hours.
She has made progress in these areas. She would rather do things on her own, then ask for help of any kind. I’m proud that she came up with her method of asking for something on her own. Despite its limited utility it gives us hope. She has not been able to routinely make the associations between abstractions such as pictures and icons, let alone words. We try these things for a time, and seeing no progress give up. We are starting PECS again. Perhaps she has made enough progress that this time it will take. I’ve been told by autism advocates that I should stop such attempts. She has informed, rather communicated to us that she does not want to use PECS because she either destroys or absconds with the icons, and we are to respect that. Others inform us, that facilitated communications will solve everything. I must say that I prefer the FC advocates over the don’t do anything your daughter disapproves of crowd. I believe they truly want to help. I don’t know what the motive is behind the don’t do anything movement. Unless they think that stasis is good. I point out that nearly every study of FC has shown its is the facilitator doing the communication. I cannot see her communicating via typing when she has problems with using pictures. Her school is planning on teaching her how to type this year. I’ll be pleasantly surprised if they can do so. They will not use FC.
Her attacks on us have subsided greatly. I used to have my arms covered with rivulets of blood from her scratching and bite marks, that I thought would be permanent when trying to console her. Now when displays aggression towards us, it’s limited to hard pinching.
I believe this behavioral changes stem from her maturing. I don’t know as we have given her various drugs. The efficacy of which I seriously doubt. Presently she is on risperdal and abilify. Her psychiatrist wants to move her from the former to the latter as her cholesterol is high. I don’t see any great changes in behavior as we have varied the doses. I’m ready to try to get her off these drugs. My wife is afraid she won’t sleep if we do. I see little difference between psychiatry and its use of off-label drugs in treating autism, and alternative medicine. I know that risperdal is no longer off-label. But different psychiatrists have prescribed so many different drugs, I’ve lost count. I think all have shown some efficacy in treating schizophrenia often thought to be a related disorder.
Receptive language is undoubtedly more developed, but of course we don’t how much is situational. She knows imperatives which are part of her routine. Whether she knows the actual name of something is doubtful. She knows the purpose of things she uses every day. She knows a glass is drunk from, but she’ll also try to drink from an empty glass.
She has no concept of numbers. She cannot count at all. This is an area where she’s shown no progress at all.
Socially, she’s grown more bonded to us and she smiles much more often. She is not interested in playing with other children at all. As far as I can tell the idea of friendship is beyond her. I’ve been informed it is just my NT prejudice which makes me believe one’s life is enriched by friendships. Why try to make her into something she is not. Let her remain alone and autistic they say. I don’t know anyone who has ever been worse off for having friends, even though not all friends prove to be true. Indeed on the autism hub, I see talk which idolizes her condition. I believe their philosophy is that the world is cold, cruel, evil place and how wonderful there are people who refuse to participate in it. There is a certain envy in their voices.
Our church does community outreach for children with special needs through a program called e-soccer. It started out small, the head if the church as one son who is Down’s and another who is autistic. There weren’t any activities for his children in which to participate. It has grown substantially and is in five counties in the San Francisco bay area as well as off shoots in India and Africa. The church is highly evangelistic although not at all during e-soccer. I’ve seen many children become engaged during this time. They look forward to coming. Their parents say their children have come out of their shell. E-soccer has not proven miraculous for my daughter. She has been to through three or four seasons of it and no interest in soccer or the other children. We take her because their are middle and high schoolers there who will stay with her and she runs around the playground with no interest in soccer whatsoever. Other programs run by school districts and such have made it clear they don’t want our daughter in their program. They won’t come out and say so directly, plausible deniability must be maintained, but they are not heartbroken when we withdraw her.
One of the hardest things about her autism is not her agonizingly slow mental development, but her complete apathy toward learning.
I don’t have any problem with the theology of the church, but they give a DAN doctor a platform. Before he became a DANite, he practiced pediatric and general “evidenced-based” medicine often in remote impoverished areas of the world and not just for two week stints, but for years at a time. I’ve talked to him about my daughter, he thinks she should be chelated. I ask him why, and he says because he’s seen it work. I know three families with children on the spectrum who are under his care. I tell them it is doubtful the treatments were responsible. But they look at my daughter and their children and wonder why I am so stubborn in not letting the good doctor help. It doesn’t matter that we tried gluten/cassein free, probiotics, killing off the supposed yeast infections to no avail. We didn’t do it long enough. We went so far as getting the chelation suppositories, but couldn’t follow through with giving them to her. We cannot say the treatments are not effective as we didn’t complete the same program. The doctor has advised one friend against getting a HBOT chamber at least while chelation is going on. I think the reasoning is that there will be oxidation of the chelating agent making it ineffective in attracting metallic cations. Yet two friends have told me that he has told them if they don’t get every drop of vitamin and other supplements into their children, those children will end up institutionalized. I’m he truly believes this and is confident that he is doing nothing but good.
They also run a school for special needs children using the various methods such as ABA and Teacch sp? But they are very big believers in facilitated communications.
Well I have rambled on, perhaps undoubtedly incoherently. I guess to summarize, things are not black and white. Organizations such as the Autism Advocacy Network do good and bad things. Autism Speaks is also a fine organization which has its problems. Even the church I belong to which has been so helpful is by no means perfect.
So ASAN keep fighting for rights of autistics, my daughter will owe a debt of gratitude to you. Help people to see that their children’s lives nor theirs has been ruined by autism. But how is it loving, if you stop research into things which may benefit her and children like her? Let the research continue!!!! Tell me how her life would be ruined, if she awoke an NT child?
Comment by Do'C — 9 December, 2007 @ 11:17 am
Bravo Mayfly.
No one said anything about stopping research. What needs to be stopped is the language that perpetuates negative stereotypes, spreads misinformation, and makes emotional appeals based on fear of autistic people. The ASAN letter makes this very clear.
Absolutely. Let it continue and encourage the field to flourish - without the harmful advertising.
No one here is saying it would be ruined, but given that currently this is not an option, the question is not truly answerable.
Comment by Anonymous — 9 December, 2007 @ 10:27 pm
Hi,
I just wanted to point out that Ari Ne’eman’s title is President. He is on ASAN’s Board of Directors, but that’s just a general way of referring to everyone on the governing board.
Thanks for a great post.
Comment by mayfly — 10 December, 2007 @ 9:28 am
Do’C
I don’t think you can say, “No one is saying, ‘Stop the research!” A protester turns up at an Autism Speaks fund raiser with a sign reading, “Research against autism is research against autistics.” Now I don’t know if that is ASAN’s policy, but I do know that sentiment has quite a bit of support.
Does ASAN support any of the research sponsored by Autism Speaks?
The statement, “If you take away my autism, you take away me.” Again, I don’t know if ASAN supports this statement. It is certainly a statement into research directed towards finding a cure to the disorder.
I’ve used the words cure and disorder which have become provocative. Here we get to the crux of the matter. There is absolutely nothing wrong with being autistic, there is nothing wrong with being blind, there is nothing wrong with having cerebral palsy, there is nothing wrong with being deaf. All human life is precious and needs to be protected. I see a person who happens to have no sight. A person who is not as ambulatory as I. A person who happens to not be able to hear, a person who happens to be autistic. I see their humanity as being superior to their ailments in removing or mitigating their ailments, they retain their humanity.
I work for a physics lab, and on Mondays during the academic year, we have colloquia. One presentation was on macular generation and devices to combat it. These devices didn’t seem to allow their user to do much more than distinguish light from darkness. They have a ways to go. I don’t think anyone was thinking if these devices were perfected, the people using them would suffer any loss.
I have a friend with CP. He has braces on his legs, and walks with crutches. He is married, has a job, and enjoys life as much, rather more than anyone I know. He attributes his joy to Christ. I also every year drive down to sleep in my car outside the headquarters of an organization which runs camps for disabled youths. The weekend camps fill up quickly for children who require one-on-one aides. Some people camp out to buy iPhones or Xboxes, some for rock concert tickets, but there are a cadre of folks doing it to get their kids into camp. Most of the people camping out have children with CP who cannot leave their wheel chairs or feed themselves. I don’t know if my friend would to lose his CP, as he views it as instrumental in his finding God, and his changing from a bitter cynic to someone effusively joyful. But he would see nothing wrong in the parents of the children wishing and praying for a medical breakthrough which would allow their children to walk. Is such a supplication selfish. It means less of a burden on the parents, and the children doing more things on their own. I don’t think so. Both child and parent would benefit. However, If a people have a similar wish for their LFA children, they are often called selfish by persons with Asperger’s or high-functioning autism. Insisting on there being no difference between them who write eloquently and passionately for their position and a ten year-old child who does not know her alphabet.
At one of our colloquia we had someone talk about cochlear implants. He wore one, having totally lost his hearing. He talked of the joy of hearing his son’s voice for the first time. [My daughter showed autistic tendencies from a very early age, however she could at one time tell you the names of everything in the house and most things outside, and was just forming her first simple sentences, when her regression started. I'd love to hear that voice again.] I bring up the implants because for a time some deaf parents did not want to have their children use them. Their fear was that their children would no longer be part of the deaf culture, but the auditory on instead.
I believe this feeling has lessened in the deaf community, but is still strong in the autistic community. Once a person reaches a certain age a move from autistic to NT is seen as not only unhealthy for that person, but also for the autistic community as a whole. This us vs. them mentality makes me conclude that such people are against research toward a cure.
Every so often one reads about some religious congregation in which an autistic child is put through an exorcism ritual. We usually read about these goings on because the child died or suffered great physical harm. The participants believe the child’s soul is demon-possessed, stolen by devil. Many autistics, though not likely to use religious imagery, liken removing their autism to removing their soul.
I see my daughter as a person first and an autistic second, remove the latter and she remains who she is. It would in no way make her a better person, or increase her worth. It would open more doors to life’s opportunities for her.
If people think that taking away a person’s autism is taking away his soul, then thy are certainly going to be against any research towards a cure, and in some cases anything which mitigates the condition.
I know the idea of a cure is far-fetched at the present time.
Please excuse any grammatical errors. I’m posting this without proofreading.
Comment by daedalus2u — 10 December, 2007 @ 11:34 am
mayfly, Autism is defined and diagnosed via behaviors. If you extinguish the “behaviors” that define autism, you have “cured” autism.
The clamoring for a “cure” does not come from people with ASDs. It comes from NTs who are forced by circumstances (such as being the parent of someone with an ASD) to associate with people with ASDs.
I think your view of the “worth” of your daughter not being increased were her autism to be “cured” is not shared by many of the parents clamoring for a “cure”.
I think the concern that “curing” autism will extinguish the personality or persona of the person with autism is unrealistic and so is misplaced. But I think that for many curebie parents, extinguishing the personality of their ASD child and replacing it with a “stepford child” without an ASD would be an acceptable side effect of any cure.
The first rule of medicine is “first do no harm”. Avoiding harm is unimportant in the eyes of many seeking “cures” for ASDs.
The “treatment goal” is extinguishing the behaviors of autism, not helping the person with an ASD live a happy and fulfilling life. If one could “cure” autism while making the person with autism unhappy, is that a worthwhile treatment? Who is receiving a benefit, the person with autism, or the NT person who has to associate with the person with autism and is made uncomfortable by ASD behaviors? If the wellbeing of the person with the ASD is not a consideration in treatment, why is treatment something that people with ASDs should look forward to?
Comment by Do'C — 10 December, 2007 @ 11:04 pm
Thank you anon - corrected. And thank you to Ari Ne’eman, ASAN president for a clear letter.
Comment by 666sigma — 11 December, 2007 @ 8:23 am
I find this message troubling, but for a different reason. It does create a stigma around the diagnosis of autism, but autism is such a wide spectrum and it gets wider everyday. The current definition is so broad and so vague that no one really knows if it is a PERVASIVE developmental disorder in my opinion.
As noted, it is diagnosed based LARGELY on behaviors. Behaviors do change over time. Developmental DELAYS by their very nature diminish over time.
I have a child that was diagnosed “on the spectrum” and has had the label removed. Even now, they still carry SOME behaviors that would put them on the spectrum. I am certain that 10 years ago, the ASD label would never have been made.
I read an interesting quote today by John Elder Robison in a NYT’s article on his book “look me in the eye.” He said:
“When they say it’s a spectrum, you have at one end people who are totally disabled by autism, and the middle people like me who are eccentric but get by fine in life. And from here on it blends seamlessly into normality. That’s why so many millions of people identify with my story.”
I found his comment “FROM HERE ON IT BLENDS SEAMLESSLY INTO NORMALITY” to be spot on. We are talking about one big spectrum. Where does autism end and PDD-NOS begin or PDD-NOS end and Asperger’s begin or quirky end and NT begin? Even NT’s have LD’s and personality disorders so NT is not perfect.
Personally, I don’t think Asperger’s is a disability. I am the last person that would be called politically correct, but I think AS is differently abled - strong in some areas and weak in others I’m sure a disproportionate share of geniuses fall under the AS label.
Today, we have more-and-more kids being diagnosed on the spectrum and we have more-and-more kids recovering or being cured from autism. These kids were most likely in the “seamless blend” or the quirky AS kid who we consider recovered.
In the past, we had geeks or nerds. Today, they have Asperger’s. My guess is that increasingly we have kids in the “seamless blend” that are also being placed on the spectrum. You will notice that almost all “recovered” kids had a PDD-NOS label wth no cognitive impairment. What does that mean? It means that they had sensory integration or motor skill problems combined with a significant language delay. That’s about it. Oh, maybe they spun in circles or banged their head or flapped their hands, too. The problem is that they now also have a label to go with their developmetnal delay. A label that says that they have a severe disability for the rest of their life. Give me a break.
The problem is the broad brush. A benign skin cancer is not the same as pancreatic cancer. “Oh, she has cancer spectrum disorder. It’s a pervasive life long disease that can never be cured and will only end in death.” It is my personal belief that ASD has become as broad as cancer. That’s a joke.
I seriously wonder how many kids are like mine that are going to be just fine as long as we don’t label and stereotype them. It’s important to get an early diagnosis and early treatment to help make up the deficits, but it is equally important not to label these kids. I do find it interesting that communicatin delays are considered severe deficits, but we do not consider innumeracy to be a problem (in the West at least).
In the end, the average person thinks ASD means severe autism. It did to me. This message sends the wrong message to most parents who think it terms of their childhood definition of autism. The problem is reallu lumping all of these disabilties together, even though we already know that multiple genes come into play.
Comment by passionlessDrone — 11 December, 2007 @ 9:01 am
Hi daedalus2u -
Why on earth must these two things be separate?
Consider the child described by mayfly, who shares many similarities with my own son. Should I honestly consider my son would be less happy, and less fulfilled if he were able to understand the concept of numbers, if the consequence was that he stopped flapping his hands fifty times a day?
You are making the wholy unwarranted assumption that people can determine what is making the person with autism happy or unhappy. For some people, this can be done; however, for others, no such determination can be made.
By way of example, my son did not want his clothes changed before school today. He cried, screamed, kicked, and ran to avoid it. Why? Was he in pain? Did he have a bad day yesterday? Was he still sleepy? Did he have a headache? I have no idea. He cannot communicate. As far as I can tell, he has no notion of anything abstract. The notion that he will lead a happy or fulfilling life without being able to communicate this type of fundamental information is absurd.
Fallacy of interrogation. The premise that the wellbeing of a person with ASD is not a consideration is false.
Take care!
- pD
Comment by daedalus2u — 11 December, 2007 @ 10:17 am
PD, I don’t know why your son didn’t want his clothes changed either, but from your description of his behavior it is completely and absolutely clear to me that he did not.
To me, it seemed that he was communicating his wish to not change his clothes very effectively. He may not have communicated his motivations for that desire in a way that you understood, but his desire was as plain as day.
You may have the belief that you son would lead a happier and more fulfilling life if he changed his clothes before going to school. That seems to be a belief that he did not share with you at that moment. I don’t know if, or how the two of you reached a compromise on changing clothes vs not changing clothes.
Understanding numbers and flapping seem to me to be behaviors that are completely independent. One can do one, or the other, both or neither. I have no conception of how extinguishing the behavior of flapping will improve understanding of anything, other than that NTs don’t like to have people flap.
My understanding is that flapping is a stress relief mechanism. ASD people flap when they are stressed, and flapping relieves some of that stress. Blocking flapping behavior increases stress. I don’t flap. I suspect that is because in my family of origin, any sign that I was under stress was used as a signal to increase the stress that was being applied.
Flapping doesn’t cause distress to the person doing the flapping. Flapping does cause distress in some NTs, and sometimes they retaliate by bullying the person doing the flapping into stopping. Learning how to stress relieve without flapping is a useful skill because there are circumstances where flapping is undesirable, as when walking a tight rope or piloting an aircraft, or in the presence of NTs who will bully anyone who flaps.
A large part of living a happy and fulfilling life is being accepted and acceptable by one’s peers and acquaintances. You may feel that the use of flapping as a stress relief mechanism is incompatible with living a happy and fulfilling life. If every one of your son’s peers and acquaintances feels that your son’s flapping is incompatible with having a positive interaction with him that may be correct (but unfortunate). A behavior of flapping or not flapping is a trivially insignificant behavior to base one’s treatment of a fellow human being on. It is unfortunate that so many use such trivially insignificant behaviors to do so.
Comment by mayfly — 11 December, 2007 @ 12:20 pm
Thank you for the reply Daedulus2u. I’m not surprised there is no clamor from the ASD community for a cure. They don’t separate their autism from their humanity, to them a cure is not only unnecessary it is insulting. [ One reason why my church runs it's exceptional sports programs is to have NT, Down's and ASD children on the same teams. So that they'll learn than children with these syndrome's are not weird. That they are not empty shells. That they have personalities.] I can fully understand the ASD community feeling that anyone considering a cure, considers them weird. I have a much better understanding of this now, than I did a few weeks ago. However, they are wrong in thinking so.
I know well six children on the spectrum, besides my own, and their parents. All of them, other than my daughter, are going to Dan doctors. In one family the mother started working in order to pay for treatments which include trips to a listening center, various vitamins and supplements, and chelation. They are the ones who want to buy a hyperbaric chamber as well. If someone on a biomedical group says this helped my child, they will try it also. Even if their Dan doctor advises against it.
They make enormous financial sacrifices, let alone the toll on them trying to get their child to take his medicine, and keep his various appointments. Do they do this for themselves? No, they do this because they think it will help their child. They are desperate and misguided in thinking what they are doing is helping their child one iota. They are not however one bit selfish. They are not doing this because they think it will make their lives easier.
You are so very wrong about the motives of parents who go down the above track. You insultingly call them curebies. I don’t know any parent who thinks their autistic child is devoid of personality or thinks of them as empty shells. They do think their children’s lives would be better without it. They do believe their children’s lives would be happier with friends. They worry about what will happen when they can no longer provide for their children. This worry is because no one can give their children a more loving environment, than what those children have at home. They worry about their children’s financial situation when they, the parents die.
Do you really think these parents risk financial ruin and their own health, simply because they are uncomfortable over their children’s behaviors? How many of these parents do you know? How many have you talked to, not lectured but talked to? Do you know their fears and hopes for their children? All parents I know love their autistic children dearly. You have built up an image in your mind of them as selfish, heartless, perhaps even cruel people. You cannot fathom they do these things out of love for their children. They need hope, not scorn.
They need the hope that services will be there throughout their children’s lives. They need the hope that research is being done to help their children to avail themselves of all life’s opportunities.
—————————————————————————————
My wife and I took my daughter to her psychiatrist yesterday to talk about weaning her off risperdal, as I cannot match her behaviors with her medicine. I’m talking about violent often self-abusive behaviors. There frequency does not seem to be related to the dosage of her medicine. Th doctor informed us that the present thought is that these drugs have a long lasting prophylactic effect, That is lessening the dose now may have no impact on present behaviors, but may result in worse future behaviors. He could not cite the study. I don’t think he is lying, nor a shill for big Pharma, but I am surprised such longitudinal studies have been done, and I don’t see how you’d rule out the confounders.
I asked him if he knew anything about the aricept study. He said he had just returned from a conference in Melbourne where the initial results were released. They are not promising.
When we were discussing my daughters improvements, I told him I thought it was mainly due to her maturing and that autistic children become inexorably higher functioning over time. Low-functioning children, albeit, at a much slower rate.
He said that is true for HFA and Asperger’s children but for low-functioning children about 1/3 get better, 1/3 are in stasis, and 1/3 regress.
I found his last comment depressing. Does that make me a bad parent?
Comment by Prometheus — 11 December, 2007 @ 12:29 pm
One of the persistent assertions I see from people seeking to “cure” autistic children is that there is a “normal” (i.e. “neurotypical”) child hidden/buried/trapped/etc. inside the autistic one.
This is a fallacy that I rarely see explored.
What if the autistic child is “all there is”?
Prometheus
Comment by passionlessDrone — 11 December, 2007 @ 1:25 pm
Hi daedulus2u -
You entirely miss my point. The issue of why he has that desire is much more important than the issue of does he have this desire. What if he had something very critical he needed to tell me, something which requires communication?
Perhaps my son has strep throat, we were at a party this weekend, several other children subsequently came down with it. Perhaps he has a migraine. The fact that he does not understand how to tell anyone these things; and thus get some type of help, is the problem, not just that he didn’t want to get dressed.
In the past, we’ve seen my son get sick, and my wife and I got sick a few days later; it was only then that we said to ourselves, ‘Man, he must have had a sore throat three days ago! My throat is killing me!’.
Not only does my son not understand that he could point to his throat to tell us it hurts, he also doesn’t understand how to use a lozenge for relief. This is because he has autism. You seem to be arguing that he’d be happier, and more fulfilled without the ability to communicate these kinds of needs than with that ability; that somehow ‘changing’ him such that he can communicate (i.e., losing autistic behavior) is akin to making him unhappy and/or unfulfilled.
Are you truly unable able to see why I find this argument ridiculous?
As far as hand flapping, I can replace it with plenty of other behaviors. How about he learns about the concepts of numbers, and also figures out how to speak?
Only if your other, more critical needs are being met first! This is the component you don’t seem to be able to apply to people that aren’t you. You can meet your needs of making a meal, dressing yourself, taking a shower, cleaning out the catbox, or using a telephone. Without these skills, or a million others that require the ability to understand the abstract, the hierarcy of what is necessary to be fulfilled looks quite different.
Take care!
- pD
How can we expect anyone toe
Comment by passionlessDrone — 11 December, 2007 @ 5:03 pm
Hi Prometheus -
Perhaps you mean, potential fallacy?
Anywyas, what about those of us who watched a child who spoke, stop speaking, one who waved hello and goodbye stop doing so? One who was not in pain everyday, cry from pain every day?
If that person that used to talk, wave, and live without pain still isn’t in there, then the autism has taken that person away, and that is something the ‘anti curebies’ can ill afford to admit. Very reminiscent of a recent advertising campaign or some such that seems to have some people in quite the tuss.
I doubt very much you’ll receive much analysis of that position from either side. But I may be wrong.
Take care!
- pD
Comment by mayfly — 11 December, 2007 @ 10:16 pm
If I could give my daughter a pill tonight so that she would wake up without autism tomorrow, I don’t think I’d find her reading about Hogwarts or listening to some cacophony she calls great music, or asking me, that night how to factor 306. I don’t expect her mother to tell me she’s going over to Suzy’s for a slumber party that weekend.
There would be 8.5 years of catching up. I can still recall her sitting in my lap and pointing out what things were in books, or around the house. Singing duets of Red River Valley with me, or giggling “Got the Q’ as I held her in my lap while playing scrabble. That was when she was 18 months old. When her autism became fully manifest that all went away. She became completely disinterested in everything.
I’d like to the think the cure would mean an eagerness to learn. I expect catching up would take years, but we would start the journey. Yes she is learning now, but at an extremely slow rate.
I don’t have the story of a wonderfully social child to tell. My daughter before the autism became painfully obvious never had any social language, did not wave good-bye, didn’t suffer any separation anxiety. She took no interest in the toys we bought her.
She is much more social with us now probably what is appropriate for a two-year old. he has the world’s greatest smile, but then I’m prejudiced. If she were cured, I’d like to think she would start interacting first with the children in church and her class in school, then the neighborhood, and then the world. It might not be that long at all before Suzy throws that slumber party.
——————————————————————————————————–
Yes, the above is indeed far-fetched. Parents of children with Down’s syndrome know the cause is trisomy 21, and that the severity is related to the number of cells with the incorrect number of chromosomes. I’m pretty sure my daughter suffers from perhaps several single nucleotide polymorphisms, though I have no proof of that. Perhaps I just didn’t do meiosis correctly and her autism is because it. Down’s parents know the talk of a cure is so unrealistic, they don’t even consider it. It might be better if parents of autistic children could know the same thing. Just a thought.
Comment by mayfly — 12 December, 2007 @ 6:22 am
“A large part of living a happy and fulfilling life is being accepted and acceptable by one’s peers and acquaintances.”
Is a person who is concerned about acceptance by one’s peers and acquaintances autistic? Doesn’t this take the “aut” (auto=self) out of autism.
My wife informs me that children with Aspergers are often desperate for friends and indeed acceptance, but lack social skills.
This is another reason why the spectrum is useless, and I wish my daughter and all children with low-functioning classic Kanner autism could be given a different diagnosis. I’m willing to surrender any claim my daughter may have to it.
The issues we, parents of Aspergers and LFA children, deal with have more differences than commonalities. The parents I know of Asperger’s children recognize this. They know my daughter, and I know their sons. In general, this difference is not true in the blogosphere.
on the site http://joeyandymom.blogspot.com there is a video entitled “This is Joey.” If what Joey has is autism, I’d like my daughter to catch it.
I ponder how Joey ever got a diagnosis of autism. I’m sure there are parents of HFA /Asperger’s children who say that Joey is just like their children. A great example, the quintessential autistic child.
Comment by passionlessDrone — 12 December, 2007 @ 6:31 am
Hi Mayfly -
Very eloqutenly stated! I agree heartily with nearly everything you have posted.
I would, however, urge you not to so easily write off biomedical approaches. There are problems in the biomedical community, to be sure, but behavior is driven by biology and there may be identifiable physiological issues you can address.
Either way, your take on the difference between the self diagnosed, Asperger children and others is dead on. I wish you luck.
Take care!
- pD
Comment by daedalus2u — 12 December, 2007 @ 8:12 am
I have a complex view of ASDs. I see it as a complete spectrum, but a many dimensional spectrum. At least hundreds, perhaps thousands or tens of thousands or more dimensions. I think that being on “the spectrum” is a fundamental human characteristic, perhaps even a fundamental characteristic of being a social organism. A fundamental characteristic that is inseparable from being a social organism.
In my opinion there are two fundamental aspects to the ASDs, the first is the neuroanatomy. That occurs when the neuronal structures are being formed, in utero, as an infant, as a child, as an adolescent, maybe even as a young adult. Once those neuronal structures are formed, they are pretty much fixed, but with some plasticity.
The second fundamental aspect of the ASDs is the acute regulation of connectivity in the brain. Normally, the brain self-regulates that connectivity to be in the near critical percolation threshold. That is where a neural network is most sensitive to change. That is where all natural neural networks self-regulate. The percolation threshold is a critical point (in a mathematical sense). The sensitivity of the network to change varies exponentially around the percolation threshold, and actually diverges (become infinite) at the precise point of percolation. That ideal is for an infinite network, brains are finite, but large enough that the concepts still hold.
In other words, as you approach the percolation threshold from above (that is when the network is more connected getting less connected), the sensitivity of the network to change increases exponentially as the percolation threshold is approached. Once the percolation threshold is passed, the functionality of the network collapses, also exponentially. That is what I think has happened in regression, the percolation has fallen below the percolation threshold. If the connectivity is increased, functionality will increase exponentially. When it reaches the near percolation threshold, the network will behave “normally”.
I think the recent fever paper is a sign that connectivity is being increased during a fever. One of the things that is strongly upregulated during an infection, particularly one that causes a fever is nitric oxide. Levels of NO can get very high, high enough to cause systemic vasodilation. If NO is involved with regulating neural functional connectivity as I suspect, then if one is below the percolation threshold and increase your NO level you will experience increased functionality of your brain. If you are above the percolation threshold and increase your NO level your functionality will decrease.
I think that anyone and everyone will become low functioning autistic if the connectivity in their brain is acutely lowered. Even if there is zero change to the neuroanatomy. Even as an adult. I think this is what happens in Rett Syndrome. There isn’t any apparent “damage” observed in humans, and in the mouse model, the mice seem to recover fully if the MeCP2 gene activity is restored after they have developed symptoms from its loss.
When the connectivity is lowered during times of neural growth and remodeling, that is when the “autistic” neuroanatomy develops. In neonates and infants, this is what causes the neuronal hyperplasia and the larger brains which are characteristically observed. NO is what regulates neural proliferation and triggers it to stop.
One of the key components of the neural network that is the brain, is the module(s) associated with social interactions. Many of the neurons associated with this module have signals regulated by NO, as for example neurons affected by oxytocin. If the connectivity in the neural network producing social connection falls below the percolation threshold, the person doesn’t have the capacity to be social.
One of the things that regulates the acute level of NO, and so the acute level of connectivity is the level of stress. Stress is a low NO state, and so stress reduces the connectivity in the brain. “Normally” this is a good thing, if you are above the percolation threshold, stress makes the network more sensitive, increases functionality, improves the ability of the brain to function in “multi-tasking mode”, where people can do multiple things at once. While multiple things can be done simultaneously, the performance at each thing suffers over doing it alone in a non-stressed situation.
If you are already below the percolation threshold, stress reduces the connectivity still more and exponentially degrades function. This is what is happening in a “melt-down”. When someone NT is subjected to sufficient stress to drop them below the percolation threshold, I think that is what causes acute psychosis.
Comment by Prometheus — 12 December, 2007 @ 10:00 am
Pd,
I think that you - and a lot of other people - are stuck in the idea that if a child was “normal” and then became “autistic” that something was taken away.
This makes about as much sense as saying that when child becomes an adolescent, that the child was “taken away”.
The child hasn’t gone anywhere - the child has changed.
I’m not proposing that autism is a normal (or, more properly, “typical”) development process - in fact, it is defined as “abnormal” (or “atypical”) development.
But it’s still development.
One thing that you don’t often hear discussed in the press or on ‘blogs is that the process of development in humans (and all other organisms) is accomplished by an intricate (and poorly understood) set of genes switching “on”, switching “off” and sometimes just switching “partway on”.
If one of these gene “switches” doesn’t come off correctly, development takes a “wrong turn”. Organisms (including humans) can develop “normally” (typically) up to the point of the “error” and then their development goes awry.
To my biologist’s eye, “regressive autism” looks a lot like a missed gene regulation checkpoint. Everything is going well and then - suddenly - brain development goes in the “wrong” direction and skills are lost and behaviors that are “atypical” develop.
That’s a rather long way of saying that there is not neccessarily anybody who gets “lost” in the process. Nor is there necessarily anybody “trapped” or “buried” or “kidnapped” inside the child with autism.
What you see is what is there.
Now, I also do not advocate simply doing nothing (in case that was the strawman you were looking for). I think that research should continue into the cause(s) of autism; treatments to moderate or eliminate pain, disability and distress should be sought and used; programs and facilities should be developed and funded to help those with autism live and function to the best of their abilities.
I think that none of this requires projecting an image of a child “trapped” or “kidnapped” by autism. These sorts of images only serve to depersonalize the person with autism and give license to do “whatever it takes” (which all too often includes tormenting and even killing the autistic child) to “free” them from autism.
Prometheus
Comment by 666sigma — 17 December, 2007 @ 9:26 am
Promo,
” . . . “regressive autism” looks a lot like a missed gene regulation checkpoint. Everything is going well and then - suddenly - brain development goes in the “wrong” direction and skills are lost and behaviors that are “atypical” develop.”
Very interesting comments and observation. My guess is that you are correct for “regressive” autism. Of course, it is pure speculation on our part. In some cases, regressive autism is wishful thinking on the parents. In other cases, it is inexperience or denial.
But there appears to be at least anecdotal evidence suggesting that regressive autism is real. The question is what is the trigger? Is it natural? In other words, is it inevitable pre-coding of the genes?
Or are there additional factors which contribute to the condition (a la lung cancer)? There is a significant portion of the population that can smoke cigarettes and never show any ill effects - ever. There are others that could smoke a pack of cigarettes for 2 years, quit and 20 years later get lung cancer. It’s in the genes, but without the outside influence there is no harm.
That is the big unknown question for autism. If regressive autism is the result of a brain inflammation or some other external influence, what is it? There are many people right or wrong that believe that an external factor is involved - whether it’s mercury, vaccines, toxins, pesticides or food allergies or a combination of the above.
One thing that I am certain of - autism is not just one thing. It is not one gene. People need to stop treating it like one illness, disease or disability. It isn’t.
Comment by Prometheus — 18 December, 2007 @ 1:13 pm
666 Sigma and I agree on one thing, at least: autism isn’t one thing - it is a group of disabilities that have been “lumped” under one heading out of lack of information.
Missed gene regulation check points can be caused by a number of things. The literature on the subject lists a number of “environmental” causes in different species. For example, temperature during fetal development can alter the sex of many amphibians.
However, the “fact” that “There are many people right or wrong that believe that an external factor is involved …” is ultimately irrelevant. “There are many people…” who believe in Bigfoot, the Loch Ness Monster and alien abduction. That doesn’t make them right.
For good or ill, reality is not subject to popular vote.
How about - just to mix things up - we look for unambiguous data supporting an “environmental” trigger for autism before clamoring for “research” to prove what “many people believe”?
We could spend countless lifetimes (and unimaginable amounts of money) chasing down every “toxin” that “many people believe” causes autism and still not get any closer to an answer.
How about trying to find out what autism is before trying to find out what causes it?
Ultimately, though, we (or at least some of us) need to change our mindset about who autistic people are. They are not “perfect”, neurotypical children “trapped” in autism (or “kidnapped” by autism). They are what they are - no more and certainly no less.
Prometheus
Comment by mayfly — 18 December, 2007 @ 7:41 pm
Some thoughts:
Autistic children develop skills which are then lost. This does not mean that the cause of the autism is coincident with the loss of skills, it just becomes fully apparent at that time. If regressive autism is used to recognize this loss of skills, then it is avery real phenomenon. If it means the child was born “NT” and some external post-partum event caused the autism, I haven’t seen any evidence of that.
The development switches not only have to be turned on and turned on to the right amplitude, but also for at the right time, and for the right amount of time.
Families do feel devastated by autism. It does no good to deny that. It does no good to tell parents who are afraid for their children’s future that they are scum. What these parents need is someone who will listen to them, and reassure them that help is available. They need to be educated that autistic children no matter how badly afflicted do bring joy, that over time they will see that although their journey is not the one they planned, it is so worth the effort.
Now if someone tells a parent that they are subhuman for thinking that autism is not something to be celebrated, and another person comes along and says “We understand how you feel. Try chelation it worked for us. B-12 shots worked for us. Hyperbaric chambers worked for us. Massive does of vitamin A worked for us. Secretin worked for us, accupuntcure worked for us, craniospinal fluid manipulation worked for us, NAERT worked for us”, to whom do you think that parent will listen?
Whops, someone left the crystal light mixes out, and my daughter has painted herself and the kitchen counter with them. She looks so beautiful in bright purple and international orange. I gotta go !
Comment by Prometheus — 20 December, 2007 @ 12:09 pm
Mayfly,
Absolutely right!
I would also like to point out that not many people are saying that autism is something to be “celebrated” and I doubt that many are implying that parents who aren’t overjoyed about having an autistic child are “subhuman”.
On the other hand, I have heard a number of people say that if I or other parents don’t try simply everything that is touted by DAN! doctors, at DAN! meetings or on various websites and lists, that we are abusing our children, condemning them to a life of misery, fate worse than death….. you get the point.
While I do not ask parents to “rejoice” about having an autistic child, I do ask them to look beyond their disappointment (which is very real, very normal and very understandable and with which I can relate) and see their child as a real person - not as a disease that needs “curing”.
I don’t think that parents need to be happy or excited about having an autistic child - that might be expecting too much from mere mortals. But I would ask that they try to accept the reality that the child they have is the child they have.
This is what upset me the most about the “ransom notes” advertising campaign; that it made it seem as though there was a “perfect” child somehow “trapped” inside the autistic one.
Their autistic child is not a flesh-and-blood matryoshka doll, with a “perfect” child nested inside the autistic one.
Prometheus