Monday, March 14, 2011

Does Ari Ne'eman want low functioning autistic children to die in drownings or traffic accidents?

It seems that in the online petition crusade, the autistic self-advocacy network
is at it again. In this, their latest crusade, they are complaining against a meeting that the CDC had where they are trying to add wandering as a medical diagnosis and Ne'eman and his cronies fear that somehow the civil rights of autistic children who engage in elopement and run away will be violated if this is enacted. Ne'eman complains about an online survey being bad science in spite of the fact that he quoted an online March of Dimes survey claiming that this proved that the alleged 80% divorce rate among parents of autistic children was a myth.

This is very ironic in light of my post of a few days ago where we see the lunatic ravings of one of Ne'eman's possibly more disturbed supporters claiming that parents of low functioning autistic children wish their charges would just 'drop dead'.

It would appear now that the shoe is on the other foot and it is Ne'eman himself who would appear to have a cavalier attitude about the lives of low functioning autistic children who often engage in elopement and wander away and die in accidental drownings and traffic accidents. I will concede to Ne'eman's credit that he did express condolences over the passing of low functioning autistic Ashley Brock when she drowned on Ginger Taylor's adventures in autism blog. However, Ne'eman, who has stated that curing autism would be morally reprehensible, has offered no alternatives to preventing these children from dying in drownings or traffic accidents when they elope and wander away. He just gives some vague statements about how the environment could be modified and the reason that these kids elope or run away is sensory issues, yet fails to provide any scientific basis for this. Until it is proven that alternatives to labeling kids wanderers and finding ways to restrict their movements in order to keep them alive or a cure for autism is found (which Ne'eman opposes) then I will be completely baffled by ASAN and their supporters who first insult parents by claiming that they wish their offspring would just 'drop dead' but then actively opposing measures that could prevent these kids from dying in accidents in the first place.


Socrates said...

Have you seen Mrs Wombles' critique?.

I'm not quite ready to condemn the super shiny aspies on this one.

I suspect a code for autistic wandering will lead to prescriptions for seclusion and restraint.

I feel they have a valid point although I'm too distracted by the Joy of Autism to do anything about researching the issue.

Ari has said and done some stupid things but he is also capable of top-class evidence based arguments and analysis when he puts his mind to it.

I think this half-baked submission must've been cooked-up by an underling. I'd give it a "D". Must try harder.

(Also, I wouldn't be so bitter and drunk if I lived in SoCal and had a rich family to look out for me.)

Stephanie Keil said...

I highly doubt that Ari Ne'eman would want LFA children to die. I like reading your blog because you provide a different perspective from ASAN but I think that this post is just ridiculous. ASAN has been quite radical on some things (e.g. their most recent petition, which Kim Wombles covers well), but I think you're way off with this one.

Anonymous said...

Ironic, considering that Ari Ne'eman supported the Restraint and Seclusion bill despite being forewarned that it contained provisions to protect the Judge Rotenberg Center and that I told him they were lobbying Congress for language that would exclude their school. Its now come out that is exactly what they did. Ari ignored this warning and didn't seem to care.

What a fu*king no nothing he is and his dumb self diagnosed supporters.

Ari Ne'eman doesn't care about the LFA. Never has and never will.

jonathan said...

@Stephanie: I don't know if Ne'eman wants these kids to die either, but he is opposed to curing them and he is opposed to study these safety measures apparently so one has to think about the results of this.

@Socrates: I did read Kwibble's critique, and I tried to comment to Farmwife stating that all not half of what I write about ASAN is true but all of it is. Though I have had my differences with Kwibble, I do applaud her for writing such a well-thought out critique and really exposing ASAN for the knee-jerk reactionary organization that it is.

I have yet to see any well-thought out evidence based arguments from Ne'eman. He can't even tell the truth about his statements that autism and asperger's are not disabilities, though it was on various places on the web.

Perhaps you could move to Southern California and meet some rich people and expose them to your sense of humor and rapier wit and then they could adopt you and you could live the life of ease you covet so much and also attend alcoholics anonymous meetings here as well.

jonathan said...

addendum: I tried to comment to farmwife but my computer (the older one i use sometimes) froze up as it often does when reading Kwibble's blog for some reason and i could not comment there.

Jake Crosby said...

Kind of ironic - were it not for the CDC's stance on what causes autism, I seriously doubt Ari would have a platform as big as the one he's been given by the government and the media to disseminate his views to the public.

Yet, when the CDC does something that he feels would go against his ideology, he starts a petition opposing it. Ari is all about Ari, and no one else.

That said, I wish I could say the problem lay entirely with Ari, but it doesn't. It also lies with federal members of the IACC, too, those who really have the power and influence. Sharon Lewis - commissioner of the Administration on Developmental Disabilities - and Ellen Blackwell - a social worker with CMS - are also part of the problem. So too, by default, is Dr. Tom Insel, for letting them filibuster prevention measures to keep low functioning autistic children out of danger.

If there ever was a time to thank Alison Singer - though it's not like she'd have anything to gain by putting autistic children in danger of dying in drowning or car accidents since she probably has an at-risk daughter herself - it would be for supporting Age of Autism's commitment to safety first in this instance...even though her bogus autism charity is just another front for pharma which is undeserving of its non-profit status.

SM69 said...

Wandering is a descriptive behaviour that cannot be attributed to any specific diagnosis, and therefore it would be wrong to include this as part of a diagnosis criteria. Autism, BP, schizophrenia, others unknown diagnosis, alcoholism, drugs, depression can all be associated with wandering behaviours.

If you enrol your ASD child into a camp or a new placement, you are given a detailed questionnaire to complete to help the staff to know your child and almost invariably it is asked if your child wanders off. As far as I am concerned this is all that is needed to assist the child and the staff to keep him /her safe.

The answer to wandering is locked doors and a close eye any time the child might be on an outing. The answer is not restrain.

Restrain is used to prevent a child’s challenging behaviour towards property, others and self. Retraining is often used for totally the wrong reasons because alternatives to restrain would be much more effective, but this comes with a much better understanding of the person’s behaviour and what can worsen and improve it; admittedly this knowledge is often lacking.

Yes, it seems contradictory that Ari would use the argument of restrain to oppose the use of wandering in the diagnostic criteria, as he has assisted in the setting up of regulations on restraining which could in effect be seen as legalising restraining. However, like him, I think unregulated restraining is worse than regulated one. I can take many examples across settings that would indeed indicate that regulations assist in controlling the use of something potentially harmful (e.g. use of radioactivity in a lab- animal use- before regulations were in place, totally aberrant use of these were daily routine). I really doubt that an average parent can control or even be fully aware of the child being restrained or not in his absence if this is not being regulated.

Adrianna said...

Stephanie: I don't think Ari Ne'eman wants LFAs to die either. However, I think Jonathan meant it as more of a rhetorical question, not a literal "Do you want these kids to die?" sort of question. If Ne'eman supports politicies that have the unintended effect of killing autistic children, is he prepared to accept those consequences? Did he even think of those consequences? That's how I saw it anyway.

Back to the OP, I sometimes wonder if Ari just supports whatever policies look good at the moment, given some of his inconsistencies. It's not exactly unusual for a politician to do such a thing, but it makes him hard to figure out.

farmwifetwo said...

I used the words I did Jonathon b/c I have neither the time nor the inclination to research the information myself.

But, you keep me "tuned in" to what is going on and I do appreciate that and hope you continue to do so.

John Robison said...

The sad truth is that we already have studies that show that accident is a leading cause of early death for people with severe autism.

While there is potential for misuse of any diagnosis, the recognition that wandering may lead to accidental death or injury is significant because it takes the problem from something a few researchers know into the more general pool of practitioner knowledge

Last year I wrote about the 25-year follow up study being done at the Univ of Utah. When they tracked down their original 1980s study group and identified those members who were now deceased, accident and neglect played the major part.

And that is the other area that should be addressed for the more severely affected population - injury through neglect, whether intention or otherwise.

SM69 said...

I am not sure if people debating here are familiar with various provisions proposed to individuals with autism, especially LFA. For health and safety reasons, wandering is always taken into account. The providers do not need to read any academic literature to know the dangers are very real, they deal with it on a daily basis and have done so for years. In their professional capacity, they cannot take any risk to loose a child.

I cannot see how describing a child in a diagnostic assessment as wandering would help in protecting the child. To describe his level of autism, communication, and behaviour does not help in providing what the child needs in the first place. How many non-verbal kids are essentially not assisted with regard to their communication? The majority. How many kids with extreme challenging behaviour are looked after in the ways that can truly alleviate their issues, right at the root of their symptoms? Not many. Why would this be different with a wandering behaviour?

Autism is not one condition, but a group of syndromes that collectively share some behavioural features. In order to understand autism better, we need to define these conditions more accurately, sub-phenotype, regressive, versus non-regressive, molecular markers (e.g. we have some specifically fitting to ASD children presenting with immune impairment). This is the sort of work that is needed at a diagnostic level. We do not need yet another loosely defined behavioural feature that does not help diagnosis, and that is not even specific to autism.

Services provisions know the issues that matter and they have always accounted for wandering.

A child who gets lost is a very sad tragedy. But it highlights how challenging it can be to keep such a child safe at all time; not that his wandering had been unknown to anyone looking after him/her.

Anonymous said...

I just don't see what the point of trying to convince Ari and people from Neurodiversity as to why autism is such a horrible disability anymore. It doesn't matter what you tell them. They don't really know who you are off the Internet and what you have to live through every day.

Why does the label of "autism" have to be treated as if we (on the spectrum) all have the exact same brain wiring where for someone in my case, I should be expected to have the exact same strengths and weaknesses as everyone else on the spectrum? If someone with ADHD is bad at math, that doesn't make another individual with the same label also bad at math yet good at other things that allows him/her to succeed in life because of the ADHD. I just don't see how having autism gives me an advantage since it causes my communication/language processing disorder (mixed receptive-expressive language disorder). Of course ND likely believes having MRELD is a gift, but I don't see how. My problems stem from my single brain, but just about anyone on and off the spectrum will never understand what my life is like. No one's ever going to solve our problems because having a mental disability with an unusual way of functioning is complicated to solve, and no one who's not an NT will ever understand how and why it's better to have a normal functioning brain.

Anonymous said...

Another thing that's stupid is that people with all kinds of mental conditions have their own social problems. Research always focuses on how autism is horrible because of deficits in social behavior, yet even the most high functioning autistics fail to understand that the media focuses on the most extreme cases of classic autism in order to protect us from knowing the reality we're living as people. People with ADD/ADHD have social deficits and odd behaviors like autistic people, but the way research presents itself is purposely made to protect those people. People with cerebral palsy sometimes have ADHD, emotional handicaps and communication problems where the affected individual thinks he/she is so high functioning, yet doesn't understand why he/she has trouble maintaining friendships with other people.

What we need to do is have the American Psychological Association reinvent the wheel on creating profiles of people rather than profits of labels (in other words, avoid diagnosing people as if they're an object or another number), but presented in a way that protects the disabled individual such as the continual use of written psychological reports, yet written in greater detail using real-life examples of difficulties the individual will face as a result of the abnormal brain functioning rather than psychological jargon. When diagnosing problems not related to mental disorders/disabilities of people, then it should be okay to label the problem.