Tuesday, December 8, 2009

James Delorey disputes neurodiversity's propaganda

I see that a nonverbal autistic 7-year-old boy who was lost in the snow in Canada for a couple of days has passed away. Once again the ND line that autism does not kill anyone has been disproved by this innocent young child's untimely demise. It always saddens me to read these things.

I realize there won't be a cure in the foreseeable future, but if one could be found at some point of time, senseless deaths like these could be prevented. So, the ND movement once again with their trying to stifle scientific research that could lead to a cure for autism does not seem to care about preventing tragedies such as these.

Once again, there will be outrage and fury by the ND's anytime a child with autism is senselessly murdered by their parents. I and anyone else who desires a cure for autism will be blamed for that murder by these people. I doubt James' death will be posted on any ND blogs, nor will any tears be shed for his death. Though I have no actual statistics, it would seem anecdotaly far more children with autism die from tragedies such as these than are murdered by parents, caretakers or others. Harold Doherty has posted it on his blog, I don't think I need to provide a link.

I wonder when Ari Ne'eman and ASAN will lobby congress for funding of GDS devices for parents of nonverbal autistic children who can't afford them.

I wonder what James' parents would think if they read Morton Gernsbacher's, Michelle Dawson's and Laurent Mottron's piece, autism: common, heritable, but not harmful.

26 comments:

Jake Crosby said...

I used to live down the street from a very severely autistic child who kept escaping from his house. His parents eventually institutionalized him when he was 11.

SM69 said...

Mortality in Autism: A Prospective Longitudinal Community-Based Study.
Gillberg C, Billstedt E, Sundh V, Gillberg IC.

Autism Dev Disord. 2009 Oct 17.


Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, Queen Silvia's Hospital for Children and Adolescents, Gothenburg University, Kungsgatan 12, 411 18, Göteborg, Sweden, christopher.gillberg@pediat.gu.se .

The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962-1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (>/=18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, a rate 5.6 times higher than expected. The mortality rate was significantly higher among the females. Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths, and it was not possible to determine whether autism "per se" actually carries an increased mortality risk.

Kent Adams said...

"The boy disappeared from his home on Saturday afternoon, apparently following the family dog, Chance, out of the backyard. He was dressed in jeans, a shirt and a vest — nothing fit for the cold weather that later hit the area."

Being the father of a boy that this could happen to, I'm not sure in this case how it happened. My eyes are always on my son and I certainly wouldn't allow him to play in the backyard with no enclosed escape proof fencing. I'm always amazed when these things happen, disappearence, drownings etc. After 7 years, you become instinctually trained as a parent on how to avoid and prevent escaping like this so it always baffles me on how this happens.

farmwifetwo said...

The satellite just kicked out - rainstorm (one that's been crossing the States) and little boy thought he'd head for the door. That's the second time this week and a new stunt when something is bothering him....

Not good.

farmwifetwo said...

"Being the father of a boy that this could happen to, I'm not sure in this case how it happened."

Easily. You are on the phone or going to the bathroom. Child opens the door and wanders out - dog follows. Their assumption initially was that the child followed the dog, since the dog stayed with the child (imprint of dog beside the child) and it was a dalmation cross... probably the other way around.

Child wanders off out of yard, dog follows.

You're less than 2min away from him... He's long gone into the neighboring woods.

It's just that quick. It's also one of the reason's I have squeaky doors and and after the time mine wandered out while I was in the bathroom... I no longer shower when he's in the home and there aren't any other adults nor close the door when I use it.

SM69 said...

It's just that quick. It's also one of the reason's I have squeaky doors and and after the time mine wandered out while I was in the bathroom...

For a child like your, the solution is called a lock.

This ancient method has been known to bring on the child's first word ever: key.

Why play with fire? If you child can get lost, don't leave the slightest chance for this to happen.

Roger Kulp said...

I had terrible problems with eloping myself up until almost two years ago,so I know intimately what it's like.I had a number of close calls,and nonserious injuries from being hit by cars when I was doing this,but that was the closest I ever came.Wandering for miles and getting lost as a child is scary enough in a city or suburban area like I did,let alone out in the Canadian wilderness.You really are unaware of your surroundings when you are doing this.I know from experience,the parents can try,but the kids always get away.

I wonder what James' parents would think if they read Morton Gernsbacher's, Michelle Dawson's and Laurent Mottron's piece, autism: common, heritable, but not harmful.

The majority of parents are not aware Mottron,Ne'eman et al even exist.I have sent parrents who tll me I am not autistic,because I can communicate so well with a computer,the YouTube link for Ari Ne'eman's PSA from earlier this year.They are shocked by how well he can talk,and say "that man can't be autistic".

You can't fool an autism mom.

farmwifetwo said...

A lock is a great idea... Until there's a fire... then it's deadly.

On the N door (we have 3 doors downstairs N, W and E) there is a hook at the top of the screen door - to keep kids in. The kitchen and mudroom doors are not locked.

Hence, their squeakiness and the reason I read in the kitchen or use the computer off the mudroom. I can hear/watch the doors. But sooner or later... everyone has to use the bathroom... I'm just lucky in an antique farmhouse... it's on the main floor.

Kent Adams said...

"Easily. You are on the phone or going to the bathroom. Child opens the door and wanders out - dog follows."

My doors, and windows are equipped with mechanisms called locks, that way, I don't always have to keep an eye on him in the house. My son is the same age as this child and would escape and wonder around given the opportunity.

If you have an autistic child, especially one on the more severe end, you don't leave life to chance.

If I just closed the door, without locking it, he'd figure that out and be out in the yard or in the neighborhood wondering around looking at street signs and get lost before he knew it. He has no fear of separation.

I'm still puzzled how these things can happen when its so very much preventable, especially at the age of 7.

Roger Kulp said...

Where is neurodiversity here?


More "Joy of Autism"?

http://blog.cleveland.com/metro/2009/12/kent_state_professor_trudy_ste.html

Kent Adams said...

"A lock is a great idea... Until there's a fire... then it's deadly."

I'm not sure I'm following you. Do you just leave your house, with your young children in it, one of which you say is severe, unlocked?

If so, I don't have that luxury. I sure wish I did. My kid would bolt and be out in no time.

As far as a fire, I would assume that a parent, like the parent in this article and like my son, both age 7, don't leave their kids alone in the house. I have a big house, 6,500 square feet. If there is a fire, I'll still know about it before it gets out of control and be able to unlock the house. Even if I can't unlock the house, I can throw furniture through the window, throw my son out (assuming somehow I missed the 3 alarm fire and we are trapped) and get out of the house.

Do you use locks on your doors? I can't leave my child alone in the house without locking the door. I can't really comprehend the life of other parents that have the luxury of leaving the doors unlocked. This is why I have a difficult time understanding any parent of a child with severe autism just allowing their child to play outside, unattended, without enclosures and who don't seem to have to lock their homes. Like I said before, I don't quite understand how these "accidents" happen.

davidbrown said...

In case you haven't heard, Kim Wombles has posted on this, and commented breifly on your tastelessness.

Something I shared with Kim that I would like heard here too: In Mesa, AZ 3 years ago, an autistic woman named Robin Blasnek was murdered by two sociopaths who had been amusing themselves riding around and shooting people with a .410 shotgun. It appears other people warned her against going out, but she did anyway.
Are you going to call this "death from autism"?

jonathan said...

No, Dave, I doubt she was nonverbal, James Delorey, clearly had problems with being nonverbal and elopement, autism certainly did cause this young boy's death. If it was someone who had enough control of their behavior to be able to consciously avoid going out, there is no comparison. If anyone has bad taste in making comparisons between the two it is you and Ms. Wombles. I don't know as much about you (assuming you are not a clay adams sockpuppet). But such tastelessness is certainly par for the course for Ms. Wombles.

Droopy said...

Blogger Roger Kulp said...

Where is neurodiversity here?


More "Joy of Autism"?

http://blog.cleveland.com/metro/2009/12/kent_state_professor_trudy_ste.html


I've read the above linked, was aware of it before, but this provided more detail. I also read the comments that were posted under the story on that page,

Again all of it made me think things, things this time I'm going to say

Something else nobody looks at or thinks about it seems, is that most of the "Sky Walkers" in life actually get piled in together into units and 'cottages' -- which makes for a compounded extremely miserable and quite dangerous experience for all -- and I mean the very residents themselves.

Nobody ever seems to want to look at or talk about resident-on-resident, client-on-client violence in such settings as MR/DD warehousing (institutions and grouphomes etc).

"big angry unhappy Autistics" (and other developmentally challenged and even maybe or especially perhaps even, the not-so big or so-angry) collected for purposes of 'living together' -- where, because no one else would have them, usually because they couldn't be kept at home any longer for reasons of danger to self or others..

Do you think that danger to self or others magically goes away or is solved once placed?

Let me give you a hint, no it doesn't, and nobody thinks beyond that point who 'others' may even be.

(Apparently a Captain Obvious consideration has been overlooked by many, including at least one who actually posts here on Jonathan's page: Happy well-behaved people, shiny Aspies and frauds, aside from short few week stints in psych units to get medicated and 'talk about' in groups, and treat their real issues, just don't make up and are light years away even at that from the majority of people who are put in institutions, and with that I mean long term placement for severely DD/behaviorally challenged)

and when somebody dies in such a place under such a situation and their only 'obituary' is an 'incident report' to be quickly filed and buried massive accrued 'records'...

ask me how I know

Another hint:
My experiences were not a few weeks' stint in some general hospital's psych unit nor were they another few weeks spent in some flowery ritzy horseback riding retreat for 'the worried well' (to then be milked over endlessly for the 'trauma' of it all)

No, my experiences were 'a wee bit different' and considerably more extensive from that (and that's putting it painfully almost comically 'mildly')

Yes, for the Sky Walkers, the Noah's, the rest of us who have been or still are there

Where are Neurodiversity then?

Where is Amanda Baggs even, with her adapted vague grossly adapted distorted claims and her carnival rendition (milked from a few weeks in a rather luxurious 'home' for the mentally ill that allowed for horses and personal pets) for any consideration of any of what its really like in a collective depository for people 'they' can no longer manage?

somehow its okay or overlooked, or just somehow not even thought about or even considered, its as if its on no one's radar at all.

I never really opened up and talked about this (and this is why Amanda Baggs has nothing to draw from in this respect and can only say its 'hard to talk about' as that's all I ever said and I just would not be plied for details when I met her online no matter how hard she tried), but one day I swear I might.

In the meantime:

To paraphrase an old environmental commercial that was, maybe not so ironically, originally about trash:

"When you [put somebody] away, what does 'away' really mean?"

Stephanie Lynn Keil said...

Actually, I did write about this before I deleted my entire blog and began the one I have now. Since someone probably has everything I have ever written cataloged you can probably find it. I know some people won't believe me anyway but I'll recapture what I said originally:

Where I lived the chairs and tables were bolted to the floor. We didn't have a TV because someone would just end up picking it up and throwing it. Most of our time was spent in a single room with pink walls and green carpet. Fights would break out every day, often more than one. There was nothing that could be lifted in the room. How many people there were varied from 10-20 depending on what ward you were on. But we had nothing to do because someone would just end up throwing it at someone else.

(And I do wish people would learn more about the psychology of those who have been institutionalized. Ever hear of "Stockholm Syndrome?" Jaycee Dugard, the most recent publicized case, spent around 18 years imprisoned in someone's backyard where she was raped and tortured and never attempted to escape. But I know some will think I'm making this up, too, even though my psychiatrist tells me this is what my problem is with wanting to be institutionalized so it doesn't make a difference anymore.)

Droopy said...

Why so much eminem you might ask?

Well eminem had a bit of a problem with 'street cred' and is often considered a quintessential 'wigga' (that's a 'colloquialism' for a white person who attempts to emulate blacks)

and on top of that, well, sometimes "if the song fits, sing it"


and one of the actually several institutions for MR/DD folks that I was placed/moved into over the years, was in Detroit.

(which at least eminem really is from Detroit)

http://www.youtube.com/watch?v=3dtfElE0mg4

Foresam said...

Jonathan,
There is a cure for autism.

navywifeandmom said...

It's tasteless to talk about reality? Why, because it doesn't fit your flowery notion of autism being just a "difference"?

In my area we recently had a ten-year-old autistic boy wander onto the free way; where he got hit and killed. ND would say that neurotypical children get hit by cars all the time - well, most NT ten-year-olds know not to wander onto the free way. The comparison would be moot if the child in my example above was two years old, but he was ten.

In the case of James Delorey, yes, his autism DID contribute to his death. He wandered into the woods and could not find his way out. When he was being searched for, a big drawback to finding him in time was that he was nonverbal and could not answer to his name being called. Had he been a NT seven-year-old, he easily could have and his life may have been saved as the rescuers were racing against time.

So yes, autism played a major part in his death. To deny that would be ludicrous.

Roger Kulp said...

As to what Droopy says here,I do think that mistreatment,and abuse of autistics,and developmentally disabled in homes is greatly underrepoted,it's sort of an out of sight out of mind thing.

I would also add the doping with antipsychotic drugs,and feeding diets,or "treats",with gluten, and/or dairy in these homes as a cause of abuse.I did not realize that I had serious problems with casein,until I went off of it a couple of momths,ago.I am willing to bet most people with an autism diagnosis do.

My question is not where is ND,we all know,they believe in locking up those with real autism in homes and institutions,they do it to their own kids all the time.What I want to know,is why dosen't Age of Autusm and the rest of them speak out more about the treatment of autistics in such places?

Everybody with an autism diagnosis needs a couple of advocates like a family member or a doctor to step in on their behalf,if they are ever faced with the possibility of being sent to such places. Fortunately,I have both.

I hate to say it,but good biomedical treatment will greatly reduce the chances of elopement.It did for me,and it did for every parent I have talked to online.The children who usually have these problems always have parents who treat the child's autism with the standard psychotropic drugs.

Droopy said...

Roger,

Its very hard for me to get my mind around what people tell themselves to make it all okay in their own minds, all I know is

because while for some of us Autism is a disabilty, Autism is nothing but an industry for still others (far too many others, and most of them claiming to advocate for us, claiming to even be us in the process, but they're in it for themselves and what they can get out of it).

Goverment, the fake autistics, the media, book publishers, the drug companies.

The social worker the special ed teacher and the orderly also want to be told how 'amazing' they are for working with such troubled people, some people want to be told how 'amazing' they are for allegedly actually being autistic -- all of them want to be seen as the great wizard, the 'expert' on Autism, having 'great insights into' Autism and on and on

(paychecks, disability checks, lots of praise and attention, who could go wrong, and its not like you know, 'they' or us, like we know whats going on, who's going to be hurt, surely not the human vegatables who can't read or write or comprehend all this, right? so who are they hurting? well I can read and I can hear and I understand all too well whats going on and I want to just scream at all of them sometimes so help me G-D)

Below is a post I made on yet another's blogsite, followed by my comment on the video of yet another "Autistic Artist" trying to use the "Autism Tag' in order to sell her wares (please be sure to watch the video and read the descriptive provided along side the video and decide for yourself, draw your own conclusions):

[...]At least when beggers and con artists of old got out on the street and pretended to be blind to panhandle quarters, they weren't in the process mouthing off about how those who really are blind 'make 'em look bad' and should be shut out of sight and denied or how there was somehow some 'spectrum' of sightednes that would allow for such criminal acts...


http://www.youtube.com/watch?v=7n3CQ0MOiac


"artist who has classic autism" --

I don't believe for one minute that you have anything even remotely resembling "Classic Autism" and you claiming that you do in order to attempt to sell your 'art' wares is really an affront and insult to those of us who do in fact have "Classic Autism."

You are no better than a begger on the street pretending to be blind in order to beg for quarters.

Stop trying to make your buck off our backs.

SM69 said...

Thanks Droopy for flagging that video- almost hilarious, and the art is so poor! Pathetic, not classic autism, yet it is insulting.

I'd like to reply to what you say with regard to people who are involved in autism, including myself of course. But let me say for now, no matter what one does, in any area, even if it seems like a totally altruistic action, there will always be benefit to the person doing it, one way or another. Even monks, even mother Theresa or who ever you can think of, will be driven by something that is in the end rewarding them of their actions. The key questions are a lot more to do with does it actually help or not? Is it valuable, as measured as objectively as possible, in absolute terms? If it is valuable, the second question is, how one can insure that this valued action can continue, is sustainable and can be if possible, delivered to a wider audience still? We live in a capitalist world, that means money matters, no matter how socialist one want to view him or herself, money is involved.

If you move away from autism for a minute, as this is a very urgent and emotional subject for you as it is for all of us, that level of intensity can clouds our analysis, and think of the environment for example. Think about the cost required to adjust our societies to be more in tune and respectful of our environment. How can this money be generated in our current economical system? One come up with new plans, rather enterprises, in a way new industries that will have the right ethics, and can sustained themselves in ways that are valuable to our environment and societies. Would you say, they are profiting of the environmental crisis and should be abolished? that we should return to a careless mode of industry that disregard totally the cost to our environment, is if there was no cost involved? Yes that industry might be fake, i.e. presenting self as if it was helpful, but is not, it is just there because it can be, making money and mistaking people, and yes there are industries in autism that are fake, people that are fake. But I think they get spotted and the results of their actions will come to light one way or another.

No conclusion to this for now, other than not everything is bad, things needs to be done, and that will involve of form of "industry" or profit making. there is no other way around this in our current system.

Snowing here! (Edinburgh Scotland)

Kent Adams said...

That person does not have classic autism, more likely a personality disorder if anything. As always Drooopy, you hit the nail on the head.

MM said...

I really can't believe you're trying to diagnose autism in a video of a person who underwent 18 years of therapy.

This young lady definitely has autism. I know because I am her sister. As we were growing up I witnessed her struggles. She used to self mutilate and still doesn't give eye contact. She has troubles identifying emotions and facial expressions. She cannot understand many ideas that are not concrete and literal. Need I go on?

Perhaps you should try not jumping to conclusions until you understand the whole situation. The interview in dallas was shot DAYS after our grandfather died and my family was grieving. The videos of her showing her artwork took MANY takes to get right and I had to coach her on how to look at the camera.

She is still having struggles with autism. She can hold it together for only so long until she exhibits pacing and self stimulatory behaviors (such as flapping her hands).

As far as her art goes, I'd like to see you do better. She has won awards for her art.

Militant autism "advocates" are what is wrong with the movement for education on autism. People who use negativity and create "clubs" are not doing anything for people with autism. Positivity and effective communication, not criticism will help educate people.

Perhaps you should e-mail my mother, the poster of the youtube video, and actually ask her about my sister.

I really wish you people could see the video documentation we have of my sister as a child. I think it would clear up a lot of your confusion.

SM69 said...

What has been contested here is the mention of “Classic Autism”, may I suggest that you might know your sister well, but night not know what classic autism is?

“I know because I am her sister. As we were growing up I witnessed her struggles. She used to self mutilate and still doesn't give eye contact. She has troubles identifying emotions and facial expressions. She cannot understand many ideas that are not concrete and literal”

Self-mutilation is not part of the diagnosis of autism, difficulties identifying emotions and facial expression, as well as a concrete and literal mind would be scored, as part of a series of more subtle communication difficulties, but these would not effectively be assessed in individuals with classic autism because their communication, socialization and behavioral difficulties are a lot more profound and would in effect confound more subtle measurement of socialization or theory of mind.

As a professional of autism, trained to administer diagnosis and assist individuals in a wide range of ways, I have had the opportunities to meet many on the spectrum. I agree one cannot diagnose based on a short video clip, indeed, diagnosis is done through interviews of individuals and parents (ADI-R) and through standardized observations schedule (ADOS). However, one can see if current presentation fits to the criteria of classic autism and in the case of your sister, they don’t. Her speech is elaborate, her body posture suggests of some level of self-awareness (apparent in other YT videos), and I am afraid what you have reported or what has been presented does not fit with a diagnosis of classic autism.

I presume that you are aware that autism is a spectrum of 3 main impairments, and whilst yes, perhaps your sister is somewhere else on that spectrum. Alternatively other diagnosis may apply.

The reason for your sister for being picked at relates to the fact that individuals with autism or their family, professionals are well aware of how autism presents and that there is a certain misused of the label. You must be aware that your sister and family would never have had the attention of the media or opportunity to show the art work without that diagnosis in hand. The question we have, how someone able to communicate so well, (even assuming all the struggles you have listed) can possibly represent the “Classic Autism” lot, who are a lot more affected than your sister is? Should she be standing in the media and distort the much harsher reality of autism? The other question we have, is that justify and honest?

These are legitimate questions in my opinion.

There are many example of videos of individuals with classic autism on YT, if you want to look for them, no doubt you will see what this is really like.

MM said...

I didn't think I needed to make a laundry list of every issue she has. She wasn't verbal until the age of 4-5. She was diagnosed by an autism professional in the early 1990s before autism was really incorporated in to a spectrum.

Anyhow, this whole autism thing isn't my area of expertise. However, I think it is unfair for people to attack an innocent video posted to educate people about autism. She was HIGHLY coached to appear as she did. My sister has feelings and knows people judge her. She wanted to appear as "normal" as possible. It has only been through many years of work that my sister has been able to do appropriate social behaviors. She can keep it together for a short time period, that's what you see in the video.

When she was diagnosed she matched a large majority of "traits". I'm sorry I cannot provide you with further information as I was a young child at the time.

farmwifetwo said...

A classically autistic person cannot be "coached".
A classically autistic person does not have speech and language skills to make a video.
A classically autistic person cannot hide the autism.

One higher on the spectrum can. One higher on the spectrum can post on forums such as this. A classically autistic person cannot put their thoughts into words without great difficulty and writing them down is nearly impossible.

I have one son that is dx'd as a "mild form of ASD". We are leaving it as such to continue OT services and his Fusion on his desk. In the school system taking Autism out of the dx removes these services. He didn't speak until 3, had echolalia at 4, could start putting thoughts into words and print them with great difficulty at 6... At 10 with a great deal of private speech therapy, after schooling and outside activities (scouts, karate) etc he is barely autistic. Oh it pops up, strange questions, claustrophobia, anxiety, fine/gross motor skills, language skills (poor short term memory)... But IMO these things are not debilitating for him, so therefore truly not autism. When we were given the Mild ASD dx she told me that he actually had Non-verbal learning disorder with a S/L delay. Probably now have mild NLD... But even the school board isn't requesting a new dx... If it wasn't for that keyboard and OT... I might have it redone.

The 8yr old was re-dx'd from PDD to Autistic disorder over the summer. He speaks at a 2yr old level, he reads at an 8yr old level. His language comp skills beyond "where is the cow", are poor. At home with us he does very well. Add in new people, go out to the mall/restaurant, he's not "bad" but the autism shows b/c he can barely speak in these situations and he flaps nearly constantly.

That's "classical" autism. http://www.susansenator.com/blog/ http://autisminnb.blogspot.com/ http://autism.typepad.com/autism/
Are other parent blogs of 2 teenagers and one young adult with that diagnosis.

That's why those with a family member of someone with Autism/Asperger's that claim to talk for those who cannot talk for themselves.. get upset. They have no idea what classical autism is like.