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Study: Adults with Autism…

19 Mar

…can live fulfilling lives. Or, so say researchers in Utah, according to a recent news story. (study abstract here)

The news story is basically an echo of one that came out last Fall. Kev blogged it then.

I thought it worth blogging again, though. Not because of the good-outcomes nature (although that is a good thing to hear). But, as one of the researchers put it:

Adults with autism haven’t received the attention from researchers that children have…

It is beyond good to see research on adults with autism. It is vital. Even if you are in the “most people with autism are children” camp, learning from today’s adults just plain makes sense.

The adults studied were part of a joint UCLA/University of Utah study in the 1980’s. In this followup, the researchers interviewed people who had IQ’s > 70 in the 1989 study. As Kev noted in his blog post, these are not people with PDD-NOS or Asperger’s, they met DSM-III criteria for autism.

The authors found about half of the study subjects had “very good” or “good” or “fair” outcomes:

By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.

Some of the details include:

About half of the 41 study participants were employed in full- or part-time competitive jobs. Six were living independently, including three who owned homes. Three were married with children, and one person also was newly engaged to be married. Eleven of the participants have driver licenses and the same number had a higher IQ than when assessed 20 years earlier.

IQ was not the main predictor of good outcomes. Instead, independent living skills were key.

The most important factor in whether study participants had a better living outcome was their degree of independence in daily activities—being able to take care of themselves, hold employment, live on their own or at least semi-independently, and take part in meaningful social relationships, according to Farley. Although IQ significantly influences social outcome, daily independence plays an even greater role in determining how well people with autism function, the researchers said.

To me, this seems to be somewhat circular reasoning: if the people are more independent, they have better outcomes. I need to read the actual study and see how they measure outcomes.

It is worth noting that “can live fulfilling lives” is not the same as “will live fulfilling lives”. A large fraction of the adults had “poor” outcomes. Also, we would all like to see fewer people even with “fair” outcomes.

About half the participants could not live or work independently, and the majority lived with their parents, although many of them had a high level of independence in their daily activities. Social isolation is a serious problem as well—44 percent of the group has never dated. In addition, 60 percent of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and worried about a social stigma attached to autism. The IQ of eight participants declined since they first were evaluated 20 years ago.

One question I would have about the study is whether there is any bias in the selection of the study subjects. Out of 241 subjects in the original 1989 study, only 41 were reported on in this recent study. How they were selected for the followup could make a big difference.

Also, I will add that some will characterize this as “Look, another post saying we don’t need to offer any treatment for people with autism”. All I can say is, those of you saying that either have major reading comprehension problems or you have an agenda.

The big question in my mind is to find out what differentiated those who had good outcomes. One suggestion made by recent news sources–the support system of the Latter Day Saints (Mormon) religion/culture which predominates in Utah. According to one story:

And the LDS Church community may play a role in their success, researchers suggest.

“We wouldn’t be surprised if a lot of what contributed to those folks’ better outcomes is the unique social structures in Utah,” said Megan Farley, research associate at the Utah Autism Research Program and lead author of the study, published online Wednesday in Autism Research journal.

“While kids are still made fun of here and they face stigma … there’s this really strong network of multi generational support that are able to foster these kids’ development,” she said.

My first reaction was to brush this off as self-congratulatory. But, they aren’t saying it is the religion. Instead, it is the social structure.

Perhaps the most intriguing statement in the above news story was given a very short comment:

All but six of the adults in the study were still considered autistic.

Wow. 6 out of 41 no longer have autism diagnoses? I really need to get this paper and see if they have PDD-NOS or AS diagnoses. But, consider a 15% “recovery” rate. Begs a lot of questions. As Kev noted in his blog post, it seems unlikely that any of these individuals received biomedical interventions. For that matter, few if any may have received ABA.

Autism and Murder

18 Mar

Two stories recently made a splash in the autism community. In the first:

An 18-year-old man described as “severely autistic” is in custody on suspicion he murdered a 59-year-old Coos County woman…

and in the second:

A judge has ruled that Asperger’s syndrome cannot be used by the defense in the case of a man accused or murdering a woman after he lured her to his home in Savage in October 2007.

Three blogs carried this story, each revealing their owners particular viewpoints. In his small circulation blog, Harold Doherty said:

In recent days and weeks two severely autistic young men have been implicated in homicides. In one case, a young man with autism has been implicated in the death of his mother who publicly professed her deep love for her son and the joy that he brought to her….Neurodiversity ideologues are unlikely to change. Their views are entrenched and tied to their own public careers as professional “autistics” or “enlightened” autism parents. The truth is that they discourage society from addressing the harsher realities of autism by effective therapy, treatment or cure. They help keep members of the public from understanding the full nature of autism, particularly as it affects the most severely autistic. Theirs is a movement whose aim is to keep everyone from facing autism reality. Theirs is a movement which wants society to keep our heads in the sand and ignore autism reality.

And on their advert covered anti vaccination site, Age of Autism said:

How many stories of violent deaths allegedly at the hands of autistic teen males will we have to read before the world either A) embraces treatment for autism as a medical ailment or B) paints all autistic males as dangerous killers and locks them away a la 1955?

So you can see that Harold uses these deaths to say how silly neurodiversity is and AoA use them to say that treatment for autism is the only valid option before society is overrun with autistic killers.

Both viewpoints are pretty ridiculous. Harold builds up the idea that members of neurodiversity don’t like to talk about the bad things autism can bring. This is patently untrue as just a fairly random peruse around Autism Hub blogs would reveal. In fact, what neurodiversity bloggers tend to talk about are the good things and the bad. A quick example from Niksmom for example. The thing is that for parents on the Autism Hub who talk openly about their kids, they easily mix the good and the bad. Amanda Baggs, an autistic person, talks about some of the bad things that can happen to autistic people often. What Harold finds offensive is that we talk about the good things *at all* . I have no idea why.

And of course, on AoA they are desperate to link everything together with treatment. To make sure that *every aspect* of autism is seen as medical and to encourage biomedical treatment of those issues. A simple look at the advert-riddled blog that they have become is evidence of that. NB – I’m not knocking ads on websites at all but six image and text ads and five ‘sponsors’ is a little bit too much.

But then the third blog I’m talking about is Lisa Jo Rudy’s where she asks carefully and thoughtfully about how we can make sure that autism is _accurately_ reported on and presented to the world?

How can we battle the anxiety felt around the “autism spectrum” diagnosis? How can we present the face of autism accurately, without raising the specter of violence? What are your thoughts on this thorny issue?

Note the lack of appeal to fear (cure ’em or they’ll kill us!!) or appeal to fallacy (the evil ND’s are brainwashing the world!!) that AoA and Harold feel compelled to perpetuate. In fact the only quibble I’d have with Lisa Jo’s piece is the emphasis she places solely on children. However as someone writing from the POV of a parent maybe this is understandable.

In my opinion, the answer to Lisa Jo’s question – how do we get accurate information out about autism? – can be answered in some part by science.

I found it quite difficult to get ahold of papers about autism and death attributed to an autistic person. But the few that I did get access to point to quite a different direction than the overly bleak and purposefully twisted futures foreseen by Harold Doherty and AoA.

In this study, the authors looked at rates of criminality amongst those with a Pervasive Developmental Disability (subgrouped to ‘childhood autism’, atypical autism and AS) . In the childhood autism group (which corresponds to severe/kanners/etc) 0.9% had a conviction as adults. In the control group, the rate was 18.9%. For atypical autism the conviction rate was 8.1%. The control group was 14.7%. For AS, the rate was 18.4% and the control group was 19.6%.

So, in each subgroup of PDD the authors looked at, the rate of criminal conviction was lower than controls. For the type of autism that Doherty and AoA are talking about less than 1% had a conviction compared to 18.9%. I think its clear that if this paper is accurate then we’re hardly going to be overrun with autistic killers.

In the other paper I couldnt get ahold of to read in its entirety, the authors looked at wether moral judgement was present in autism. Its worth noting the assumption that ‘theory of mind’ is somewhat accurate by these authors but still,:

Cry baby scenarios, in which the distress of the victim is “unreasonable” or “unjustified,” do not elicit moral condemnation from normally developing preschoolers or from children with autism. Judgments of moral transgressions in which the victim displays distress are therefore not likely the result of a simple automatic reaction to distress and more likely involve moral reasoning…

Therefore,

…basic moral judgment [is] substantially intact in children with autism who are severely impaired in ‘theory of mind’.

Or in other words, severely autistic people demonstrably know the difference between right and wrong.

The third paper that I did get ahold of in its entirety was a very disturbing case study about an autistic 10 year old girl who killed her baby sister. After reading it and the heap of physical and mental abuses placed upon the autistic child, including the parents letting neighbours beat her and the parents withdrawing her seizure medications I felt this case was too extreme to be valid.

The feeling I get is that these tragic cases of severely autistic people seriously harming others are rarer than rare. Certainly the observation that severely autistic people clearly are aware of right and wrong and that the follow up observation that severely autistic (and atypically autistic) people had an extremely low conviction rate compared to controls shows that I think its very wrong to paint autistic people as requiring a cure before they kill us all or are forcibly locked away. It is also wrong to suggest that the ability to find happiness in a life with autism is somehow not realistic because autistic people kill others. Its a real shame that Doherty and AoA – all parents of autistic people – have so little respect for the sort of people their children may turn out to be.

Anti-vaxxers rejoice! You got another one!

14 Mar

DANA Elizabeth McCaffery died at 4 weeks of age from Whooping cough, a totally vaccine preventable disease. She was the first to die from this appalling disease since 1997.

Local Paediatrician Chris Ingall said:

“The only way to stop babies getting infected with whooping cough is by vaccination, there is no other way,”he said.

“The vaccination rates on the North Coast are the worst in Australia. This is why we have so many incidences in this area compared with other parts of Australia.

“Parents should be alarmed, whooping cough kills little babies. We must get our vaccination rates up so adults don’t pass the disease on to babies.”

The local health authority acted responsibly by bringing forward the vaccine schedule – a move that many anti-vaxxers will be horrified at no doubt.

Meanwhile, over in Kittitas Secondary School in the United States, the local health authority:

…is requiring postponement of all field trips and scheduled activities or events that include other schools, school districts, and/or family members of students.

Why? Because of Whooping cough.

As of Thursday, March 12th, there have been 24 cases of Whooping Cough in Kittitas County; 21 of these cases have been Kittitas Secondary School students or staff members.

In addition to those who tested positive over 150 Kittitas County residents have been tested for Whooping Cough since the beginning of this outbreak…

And still more elsewhere in the US:

Two elementary school students in the Stevens Point School District are recovering from whooping cough…

and yet more in the US:

The warning comes after two students in the district have been diagnosed with the potentially fatal bacterial infection. The health department would only say they are elementary aged students and were being treated.

How terribly sad and tragic that the same situation is playing out across so much of the affluent world – kids dying of vaccine preventable disease – because a few idiots think they know best and are willing to put the lives of others children at risk, when in the third world countries people are still dying by the tens of thousands from vaccine preventable disease and are desperate to get ahold of vaccines.

Once more I’m shamed by the actions of those in the so-called autism community who perpetuate this ridiculous nonsense at the cost of the very lives of babies.

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Poling turns his back on genetics

13 Mar

It’s been a year since the concession in the Hannah Poling case was made public. I’ve been thinking that we would likely see some discussion on it again–especially since the Bailey Banks case didn’t turn into the media event that the autism-is-caused-by-vaccines groups would have liked.

OK, I’m not that good at predicting events, but I was thinking after a year it is time to write a couple of posts about some issues from the Hannah Poling case for a couple of weeks. So, I wasn’t totally surprised when Dr. Jon Poling came out with an op-ed piece in the Atlanta Journal Constitution, “Blinders won’t reduce autism”.

When I read this last night, I thought “why blog this?” But, one line in there bugged me–it’s a common misconception but one that a doctor, heck a neurologist, should never make: the idea that genetic conditions aren’t treatable.

Here’s the quote:

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention

Wow. I guess we should tell Dr. Randi Hagerman at the UC Davis MIND Institute and everyone else working on fragile-X (a genetic condition that is on the verge of demonstrating valuable interventions) to stop their work?

And, why is it that people who claim to support “gene-environment” interactions seem to have disdain for the “gene” part? How are we supposed to separate the various autism subgroups without identifying the genes? And, if we identify genes, won’t their function give us some idea of what environmental causes might be worth studying?

OK… I’ve got that out of my system….

As long as we are here, we might as well look at some other fallacies. A good place to start is the Autism Street blog, who covered the poling op-ed. It’s well worth the read, as he covers some things I won’t.

One thing we do both cover–this statement by Dr. Poling:

Public school systems are drowning in the red ink of educating increasing numbers of special-needs students.

Autism Street has a nice graph (again, I encourage you to take a look), but here I’ll just point out that this assertion by Dr. Poling about the increasing numbers of special education students is just plain false. The percentage of the student population in Special Education has remained remarkably constant over the past 10 years or so. The cost of some of the autism therapies (ABA in particular) has likely driven costs up, but that isn’t what Dr. Poling said.

The main reason I was going to avoid discussing Dr. Poling’s Op-Ed is the fact that is is rather poorly disguised attempt to air his ongoing battle with Dr. Paul Offit.

Dr. Poling writes discusses how Dr. Andrew Zimmerman is a hero to the cause because of a recent book he edited. He then makes Dr. Offit the villain for Autism’s False Prophets:

On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called “Autism’s False Prophets.”

Frankly, I think Dr. Poling should have listened to that little voice in his head (which I hope was there) saying, “Don’t take the cheap shots”. By which, I think that describing Dr. Offit’s book as a novel was rather silly and just points out that this is a personal attack by Dr. Poling. It doesn’t add, it just detracts.

If you think calling that a personal attack is a stretch, here’s a bit of telling imagery:

In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese.

Actually, I thought that Dr. Offit gave people like Andrew Wakefield a lot of respect, considering the low quality of their research and their public actions.

I was struck by the “cream cheese” allusion. Anyone recall this?

Paul Offit is the Philadelphia cream cheese of the autism debate — he smears so effortlessly

–Dan Olmsted, September 13, 2008

It stuck in my mind because it was so bad. Seriously, I had some people outside of the autism world read that bit by Dan Olmsted and asked them what they thought Dan Olmsted was trying to say. The readers didn’t come away with Mr. Olmsted’s message (that Dr. Offit smears others easily). Instead, they came away thinking Dan Olmsted was saying that it was easy to smear Paul Offit! S

My guess is that Mr. Olmsted wasn’t writing for anyone other than the Age of Autism regulars who would overlook his clumsy writing for a chance to poke fun at Dr. Offit, so he probably isn’t bothered.

I guess Dr. Poling thought it was a good analogy.

But, back to my own clumsy writing. Dr, Poling makes this statement:

As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.

For my part, I wonder how a neurologist can turn his back on considering genetic conditions worthy of intervention. I wonder how a scientist who supports the idea of gene-environment interactions can turn his back on genetics.

Dr. Poling closes with this statement:

In the end, logic and reason will prevail over politics and profits.

God, I hope so. Unfortunately, Dr. Poling seems to have allied himself with groups who have abandoned logic. Generation Rescue and David Kirby come readily to mind.

Texas "Fight Club" at school for mentally disabled

12 Mar

These sort of stories just anger us all, I know. But, these stories need to incite some public outrage.

CNN has a story about a Texas school for the mentally disabled where the staff appear to have been staging “fight clubs” amongst the students.

The situation came to light when a cell phone was found with videos. Yep, someone had been making videos of the fights since at least 2007.

Corpus Christi police received the cell phone a week ago, Wilson said, after someone found it and gave it to an officer working security at a hospital. The officer looked at several of the videos and then gave the phone to the police’s forensic unit for analysis. More videos were found in the phone’s memory.

“It appears it was some sort of a fight club,” Wilson said. Twenty videos were found on the phone, with dates going back about a year. All the videos featured the school’s “clients,” who are severely mentally handicapped, he said.

In case you are reading this: Mr. Security officer, you did right. Too bad you weren’t around to stop the fights.

Here’s how the fights are described by CNN:

On the videos, the clients “are not upset like they are being forced,” Wilson said. “They are being more goaded into it. There’s a lot of voices on there from workers … saying, ‘Look at that, ha ha’ … laughing, stuff like that.”

No clients are seen crying, upset or injured on the videos, he said, but none of the workers is seen stopping the fighting.

“The fighting entails pushing, wrestling and some shoving,” Wilson said.

So, likely there weren’t many injuries that would raise red flags. But, I am still enraged. What kind of sick person would encourage and get pleasure out of this?

To the Corpus Cristi police and District Attorneys: I know that the laws tend to be weak in fighting this sort of abuse. Please do everything you can to make sure the people responsible are punished.

Facebook is the new vaccines

11 Mar

I thought I’d maybe travelled a couple of weeks forward in time and was reading a particularly stupid April Fools joke news report when I saw the Daily Mail were reporting:

Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can – if there is a true increase – be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering,’ she added.

‘She’ in this instance is Professor Susan Greenfield of Oxford University, which just goes to show that even a massively intelligent person can also be a monumental idiot on occasion too. Some other gems of wisdom include:

‘My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment.’

Buzzing noises and bright lights. I think these opinions reflect the lack of experience Professor Greenfield has with computers rather than any accurate reflection of how a PC or Mac actually works.

Note something about this totally ridiculous piece of journalism. They use buzzwords like Twitter and Facebook that the average uninformed Daily Mail reader might’ve seen but have no real idea about. They also clearly are talking about the opinions of one woman. At no point is any study or science referenced to support this Professors opinions.

In the eighties the Daily Mail was one of those newspapers convinced that ‘video nasties’ (straight to video low budget horror movies) would bring about the end of civilisation. In the nineties they were of course standard bearers for antivaccination beliefs. In the noughties they’ve published a few pieces on the evils of the nasty Intraweb.

But of course what really annoys me about this is the fastening on to autism. Its explained how naturally autistic people function online is a possible example of how the online environment (Facebook, Bebo, Twitter etc) are (oh dear god!) rewiring the brains of our children and making them autistic.

Never mind the fact that most new cases of autism are diagnosed in kids under three whos only interaction with a PC up to that point would be to try and push a rusk into the DVD tray. Never mind the fact that adult autistics are pretty wary of social networks at first. Lets just find another way to demonise autism and blame it on something else for which there is no supporting science whatsoever.

Autism And Divorce

8 Mar

What is the divorce rate among autism families?

Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children) with some sort of autism spectrum ‘disorder’ diagnosis?

Many bloggers have apparently attempted to look somewhat earnestly at the question – and they often come up empty handed:

Lisa Jo Rudy
“But so far as I can tell, having researched the topic in all the usual places plus a few more (personal connections to reearchers in the autism community), there is no basis for these claims.”

Kristina Chew
“While I have often seen the figure of 80-85% referred to, I have not found a good source for this figure.”

Patricia Robinson
“I can’t find a study that shows that rate.”

But for everyone of those who don’t turn anything up, there appears to be a glut of what looks more and more like internet urban legend similar to the following:

On Oprah
“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation’s largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have news for Autism Speaks – 100% of all marriages end, eventually.

In all practicality, there are probably way too many internet discussion forum threads, blog articles, and statements from anti-autism advocacy organizations to really quantify, so I’m not even going to pretend to try. Heck, this is probably one reason this particular urban legend persists – the fallacious logic of appeal to popularity can be strong with the masses.

Let’s just round out that fallacious logic, of truth due to popularity, with a comment from botulinum toxin injection-loving Jenny McCarthy, which is really not much more than ascribing importance to her personal experience (appeal to anecdote).

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

Source

Well if Jenny believes it, it must be true (and especially so, since she apparently said this on the Oprah show).  😉

Okay, enough already. It’s clear that there is probably a lack of real quantifiable information “out there” about divorce among families with autistic children.

However, Easter Seals (in conjunction with the Austism Society of America) did look at the question (quite recently I might add: July, 2008 – Report Published in December, 2008) as part of a larger “Living With Autism” study. You can download the report (registration required) here.

Even autism super sleuth, Kim Stagliano, over at AoA noted this ‘research’ when it dropped (apparently whining about unsurprising content):

“Click HERE to read more useless information that any parent of an autistic child would have told you for a large coffee and 15 minutes of respite time. Is this what we can expect from the partnership of ASA and Easter Seals?”

Kim obviously couldn’t be bothered with some of the report’s details, really didn’t care, or just skimmed the media story, and didn’t even read the actual report (personally, I’m voting for this possibility as likely). Of course it’s also entirely possible that Stagliano’s absence of mention about the divorce rate information in this survey, is due to lack of interest in the subject, or some other reason altogether.

Pleasantly surprising however, following the AoA post, is a small, yet more astute portion of commentary on AoA (yes, you read that correctly), authored by “Gale”:

It also sheds light on an often misreported urban legend of higher divorce rates for families with autism concluding “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.”

Good on Gale for adding a little to the story here!

So what numbers were actually reported for divorce rates by Easter Seals?

No Special Needs (N=866) 39%
ASD (N=1573) 30%

30% ??? Not only is that 25% lower than the families with no special needs children (the ‘control group’) in this survey, it’s nowhere near the mythical 80% number.

But let’s be clear here. The Easter Seals report, while perhaps interesting, is not a scientific study.

While it is a fairly large survey, and one that contains a sizeable ‘control’ group, it has problems that make it very limited in its ability to lend support for conclusions about reality.

First of all, there is an obvious likelihood of selection bias. The survey respondents were solicited via an e-mail invitation from Easter seals, ASA, or Harris Poll Online, which means the respondents were likely to be already involved (to some degree) with at least one of those organizations (enough to be on some sort of contact list), and regular internet users. The survey respondents may, or may not be truly representative of parents with ASD children. The ‘control’ group may not even necessarily be representative of the parents of children with no special needs (the U.S. divorce rate for married couples with children is probably closer to the U.S. average of 48%).

There is evidence of one possible effect of such selection bias, and that is that this survey’s demographic profiles are not consistent with the most current autism epidemiology at all. A full 55% of the parents of ASD children were reported to be parents of autistic children, as opposed to 45% of the parents whose children were diagnosed with PDD-NOS or Asperger’s. This is fairly divergent from the current descriptive epidemiology which puts Autism at about 33% of the total diagnoses, and 67% for PDD-NOS and Asperger’s combined. Such a skewing toward autism diagnoses could represent any number of things (diagnostic inconsistency for example), but I think it’s certainly possible that selection bias (specifically, “self selection”) is at play here – e.g. parents who are already connected in some way to Easter Seals or ASA, may simply be more likely to be the parents of children with an autism diagnoses, and parental participation in such groups by parents of children with PDD-NOS and Asperger’s diagnoses may be considerably less, because affiliation with such organizations simply may be a lower priority for those parents. If this is the case, it would inadvertently exclude representation of a significant portion of the question’s target parent population. If the question’s target population is not representative, is the information accurate? It’s hard to know.

In the context of a sense of scientific rigor, there just isn’t much here. Surveys, and parent reports are just that, reports. As an example, diagnoses were not confirmed with any standardized and normed instruments that I can see. And, to be fair, scientific answering of the divorce rate question wasn’t really an objective of this survey in the first place.

I realize that a skeptical look at both the urban legend of 80% or higher divorce rates and the reported lower divorce rates from the Easter Seals/ASA survey doesn’t really provide any kind of clear conclusion. There will be those who believe that anti-autism advocacy groups like Autism Speaks have some sort of authority on the subject, and they probably won’t see anything wrong with the perpetuation of what looks more like urban myth for pity. There may also be those who believe that parents of ASD children are less likely to divorce (based on this survey, or their own beliefs), ascribing some sort of family-strengthening magic to having special needs children in and of itself.

As for me, I tend to think the actual divorce rate among autism families is probably pretty close to whatever the average is for all families. All families, and all marriages, have sources of difficulty, conflict, and compromise. They all have good too. Is there any reason to think that parents of ASD children are really that much different than most parents when it comes to divorce overall, one way or the other? So far, I haven’t seen any good scientific evidence to make me think so.

Some readers may think of me as one of the Evil Neurodiverse League of Evil Bloggers, and be wondering why I wouldn’t jump on an opportunity to say that having an autistic child is some awesome family-strengthening thing that makes a man more happily married than a father with typical children. I’m sorry to disappoint in this regard – while possible, and undoubtedly true for some, the science just isn’t out there to support the notion that such a statement is applicable to couples with autistic children in general. If you were hoping for something potentially more romantic, or something as equaly tragic (and real) as an 80% divorce rate among autism parents, I recommend:

Dr. Horrible’s Sing Along Blog.

IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

Advocacy Success: NIMH Use of Stimulus Money Includes Services-Research

5 Mar

If you’ve read what I’ve written on the IACC process, and been able to get past my annoyance with the political maneuverings, you know that I’ve had great hope for the research into areas involving services and adult issues.

Given that, you can imagine that I was quite pleased to get this email from Ari Ne’eman of ASAN (the Autistic Self-Advocacy Network), discussing recent RFA’s (Requests for Applications) for research topics in specifically these areas.

Hello,

Recently, the National Institute of Mental Health released several Request for Applications (RFAs) on services-research topics relevant to autistic people and our families as part of a broader effort to identify NIMH’s priority areas for use of stimulus funds. The RFAs utilize funds specifically allocated under the recently passed American Recovery and Reinvestment Act (aka: the Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and the broader autistic and disability communities have been lobbying for increased representation of services-research and bioethics issues in the NIH research agenda for some time. We’re pleased to share with you these RFAs, which hopefully will yield research that will have a positive impact for our community.

04-MH-104 Access to services by individuals with autism and their families. Engage well-characterized subjects and families in existing autism research activities in preliminary studies exploring variations in access to and use of services, identification of targets for services interventions, and exploration of how variations in service use affect family functioning in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W. 301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104* Ethical Issues in the Translation of Genetic Knowledge to Clinical Practice. Genetics and genomics have great promise for the development of personalized medicine, yet the ethical, legal and social implications of both the research and application of genetic and genomic knowledge and technology are far reaching. Studies are needed to better understand the factors that influence the translation of genetic information to improved human health and the associated ethical issues. Examples of studies include those to address ethical issues related to broad sharing and use of new genetic information and technologies for research to improve human health, human subjects protection in genetic and genomic research, the identifiability of genetic/genomic information and how our understanding of identifiability is evolving, return of research results and incidental findings to subjects, alternative models of informed consent for broad data sharing for research, and the impact of intellectual property (IP) issues on development of new technologies. OD(OSP) Contact: Abigail Rives, 301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D., 301-443-3367, jnoronha@mail.nih.gov

05-MH-101* Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism. Existing large integrated healthcare networks are needed to more efficiently conduct large-scale effectiveness trials in “real-world” patient settings. The NIMH solicits individual or collaborative, linked grant applications from researchers with experience conducting studies within large integrated healthcare delivery systems to develop and test infrastructure to efficiently conduct trials on the effectiveness of treatment, preventive and services interventions to improve care for people with mental disorders and autism. Applicants can propose studies to 1) demonstrate the ability to identify, recruit and enroll large patient populations into clinical trials, 2) harmonize electronic medical record data across multiple integrated systems for research use, 3) pool data for common analyses, and 4) build capacity for the collection and storage of biologic material. Contact: David Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103* Collaboration with AHRQ Comparative Effectiveness Research Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to support research grants (PA-09-070) on comparative effectiveness of clinical treatments and services as authorized in the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013 mandates two mental health categories: Depression and other mental health disorders; and Developmental delays, attention deficit hyperactivity disorder and autism. NIMH is interested in funding ancillary studies including but not limited to: 1) studies on the comparative effectiveness of important new or existing technologies; and 2) assessment of the comparative effectiveness of treatments that are commonly administered to children but have been evaluated for safety and effectiveness in adult populations. Two year studies will contribute to successfully implement the mental disorders components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs, DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364, arupp@mail.nih.gov

04-MH-105 Developing interventions and service delivery models for the transition to adulthood. Conduct pilot studies to develop and test developmentally appropriate, evidence-based prevention interventions and service delivery models for youth with who are at high risk for, or experiencing severe mental illnesses who are transitioning to adulthood. Studies would propose strategies to address discontinuities in service systems and health care financing. Contact: Joel Sherrill, 301-443-2477, jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active in lobbying for the inclusion of quality of life oriented research in the IACC’s priorities since this IACC’s inception in 2007. While having both positive and negative components, the IACC Strategic Plan includes services- and quality of life-research components, including research on meeting the needs of autistic adults. It can be found below.

04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the research and scientific communities, encouraging them to apply for funding for projects that will positively impact the lives of autistic people while working with the self-advocate community to ensure inclusive and participatory models of research, as we practice through our partnership with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Please feel free to e-mail us at info@autisticadvocacy.org with questions on ASAN’s research advocacy and how you can get involved. If you are a researcher, interested in interfacing with ASAN and our research partner AASPIRE on research priorities, design and implementation, we encourage you to contact ASAN Board Member and AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Autism and Insurance

3 Mar

ResearchBlogging.orgOne of my favorite autism researchers is a guy named David Mandell. The reason is simple: he just asks good questions.

For example, he studied Vocational Rehabilitation and compared the results for autistics and non-autistic adults. There’s a guy looking at issues that will matter to me all too soon, and already matter to a lot of people already (people all too often forgotten even within greater the autism community: adults).

He looked at adult populations in psychiatric hospitals and found that many adults diagnosed with schizophrenia may be autistic.

Now he has addressed a big question: how much would adding insurance mandates for autism increase the premiums?

This question comes up a lot. For example, in California one of the big questions has been how can Kaiser get away without providing insurance coverage, even though California has an autism insurance mandate (AB88).

The YouTube video is about the first person to win coverage for therapies like Speech, Occupational and ABA from Kaiser:

Kaiser said this will “Significantly increase the cost” of insurance, with “their actuaries” estimating would be $5 to $7 per member per month.

As an aside, the Kaiser person in this meeting was dodging the question, and it is annoying that the interviewer let her do it. The question isn’t about how much it will cost, but the fact that California already mandates that the insurers cover the therapies and that kaiser is avoiding it’s legal responsibility.

As another aside–this is what insurance is for. We pay a little bit to share the risk. If it costs us all a little bit so that some small group gets help when they need it. We don’t question it when we are talking about, say, therapies for a stroke victim or someone in a bad accident. Why do we question it when it comes down to children with developmental delays?

Pennsylvania recently passed a mandate requiring autism insurance coverage with a $36,000 cap per year. Dr. Mandell works in Pennsylvania and used his state as an example in his paper, Quantifying the Impact of Autism Coverage
on Private Insurance Premiums.

That’s a RBQ (really big question) that comes up a lot when people are working on getting autism insurance mandates in their state: what will the cost be? Insurers, as one could imagine, claim the costs will be big. (again, avoiding the question of whether it is the right thing to do).

I won’t go into the details of the model Dr. Mandell’s team used. It was actually pretty straightforward, just as you would probably expect. Instead, let’s take a look at results. Figure 1 shows the increase in insurance premiums if autism therapies are covered.

Figure 1 from paper

Figure 1 from paper

The y-axis is the percent increase in insurance premiums, and the x-axis is the average expenditure per child with autism (in $1000’s). The model gives estimates for average expenditures from $10,000 to $36,000 (the cap in the Pennsylvania insurance mandate). Estimates are given for 3 different autism prevalences: 2.0 per 1000, 4.0 per 1000 and 6.7 per 1000. Note that 6.7 per 1000 is the same as 1 in 150.

Take a look at the highest estimate: $36,000 per child, 1 in 150 prevalence. Increase in insurance premiums? 2%. Yep, 2%.

Or, in the words of the study authors:

Even in the unlikely event that treated prevalence were to rise to the accepted community prevalence of 1 in 150 children, and per capita expenditures rose to $36,000 per year, the increase in the family contribution would reach $6.53 a month, or $78.31 per year

This may be the same amount as the Kaiser actuaries claimed. They claimed about $5-7 per “member”. Usually “member” means the primary insured (I.e. the parent whose job gives the insurance coverage). If, instead, they mean $5-7 per every insured family member, then Kaiser’s estimate is likely about 4x higher than prof. Mandell’s team’s calculation.

Prof. Mandell’s team recognizes that this $78.31 per year is likely an overestimate.

To that extent, the estimates presented here may overestimate actual increases to premiums, given that some healthcare expenditures would remain the same but now would be associated with an ASD diagnosis.

One reason they give is that many children with autism may already be receiving insurance paid medical treatment, but under a different diagnosis. I.e. doctors may be avoiding the autism label in order to get reimbursed. So, for some kids and some therapies, an “autism” mandate may just shift the costs already being paid by the insurance companies from some other diagnosis to autism.

Another reason why this estimate may be low comes to my mind, even though it isn’t discussed in the paper. I know this is anecdotal, but medical expenses are likely highest for younger kids. That’s when the OT, ST, and ABA type therapies will be most common. It doesn’t make sense that the average expenses would be the same for older kids as for younger kids. So, when they calculate based on $36,000 per child per year, they are likely overestimating the expenditures for the older kids (say ages 10-20).

Another possible cause of over-estimating the expenditures. When they estimate for the full CDC prevalence (1 in 150, or 6.7 per 1000), they are including all ASD’s. People with, say, Aspergers or PDD-NOS have significant challenges, no doubt. However, my guess is that they do not require the same level of medical expenses as someone with autistic disorder. So, by assuming the prevalence for all ASD’s, Dr. Mandell’s group may have overestimated the expenses.

Now, it is worth noting that when one includes ABA in the picture, $36,000 per year may not cover everything. A 20 hour week program could cost more than $36,000.

But, leave all of that out for now. Take the high end estimate and ask, will a 2% increase in premiums to make such a big difference? I know there is a risk of this discussion getting sidetracked into an ABA discussion. But, consider adding 2 sessions a week of speech therapy and/or 1 session a week of OT to a young autistic kid’s life. Think of the difference that could make. These are life-long benefits. Isn’t that worth something comparable to, say, the amount of insurance premiums we pay to cover heart surgeries or other very expensive medical interventions for adults?

Or to put it another way: if my insurance company said, “Sure, we can give your autistic kid these therapies now. But, if you ever have a heart attack, you are going to die on the table because we won’t pay for heart surgery.” I’d sign on the bottom line. No, I am not asking everyone to make that choice, or to sacrifice their own benefits for other people’s kids. But, isn’t improving the life of a young child worth at least as much as what we spend to improve the life of older adults?

James N. Bouder, Stuart Spielman, David S. Mandell (2009). Brief Report: Quantifying the Impact of Autism Coverage on Private Insurance Premiums Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0701-z

This paper has also been discussed in the Translating Autism blog, which is where I found out about it.

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