Saturday, February 27, 2010

Relationship between autism and cancer?

I just ran across this study and wanted to point it out.  The implication of this study is sure to raise a few eyebrows.

The Correlation between Rates of Cancer and Autism: An Exploratory Ecological Investigation

Autism is associated with high rates of genomic aberrations, including chromosomal rearrangements and de novo copy-number variations. These observations are reminiscent of cancer, a disease where genomic rearrangements also play a role. We undertook a correlative epidemiological study to explore the possibility that shared risk factors might exist for autism and specific types of cancer.

Methodology/Principal Findings
To determine if significant correlations exist between the prevalence of autism and the incidence of cancer, we obtained and analyzed state-wide data reported by age and gender throughout the United States. Autism data were obtained from the U.S. Department of Education via the Individuals with Disabilities Education Act (IDEA) (2000–2007, reported annually by age group) and cancer incidence data were obtained from the Centers for Disease Control and Prevention (CDC) (1999–2005). IDEA data were further subdivided depending on the method used to diagnose autism (DSM IV or the Code of Federal Regulations, using strict or expanded criteria). Spearman rank correlations were calculated for all possible pairwise combinations of annual autism rates and the incidence of specific cancers. Following this, Bonferroni's correction was applied to significance values. Two independent methods for determining an overall combined p-value based on dependent correlations were obtained for each set of calculations. High correlations were found between autism rates and the incidence of in situ breast cancer (p≤10−10, modified inverse chi square, n = 16) using data from states that adhere strictly to the Code of Federal Regulations for diagnosing autism. By contrast, few significant correlations were observed between autism prevalence and the incidence of 23 other female and 22 male cancers.

These findings suggest that there may be an association between autism and specific forms of cancer.

The text of the study is freely available, so I suggest you read it if you are interested

AutismNewsBeat : I have a right to be disruptive

This is funny.

AutismNewsBeat apparently wanted to attend a conference hosted by TACA -
As the father of a child with autism, I assumed that $50 would get me in the door at the Wisconsin Real Help Now Conference, sponsored by the anti-vaccine group Talk About Curing Autism Now.
For those of you who don't know, TACA (Talk About Curing Autism) is an organization that seeks to help people treat and hopefully (someday) cure their autism.  If you have read anything written by AutismNewsBeat, you would know that he is very against everything that TACA stands for.  And, if you had read comments like the ones he leaves on the autism site on, you would know that he tends not to be polite in conversations - especially with people that he disagrees with.

Apparently TACA knows this and have told him that he is not welcome at their conference -

The purpose of our Wisconsin Real Help Now Conference on Saturday, February 27, 2010 is to bring together members in the autism community in order to educate and support families and facilitate dialogue on important issues related to autism. As such we want to nurture an environment that is conflict free and allows open communication.
Your attendance at a previous national autism conference was disruptive to the mission and purpose of that conference. We want to ensure the focus of the conference is on education and support and that the environment is safe and supportive for conference attendees.
We have given you a full refund of the purchase price. You will not be admitted to this conference.

AutismNewsBeat is upset because all he wanted to do was bring some skepticism and pointed question that are "by their nature disruptive to the 'mission and purpose' of these types of organizations".  And what's a supportive, conflict free environment without a little disruption?  After all, it is his god given right to go and spread his version of "the truth" to enlighten the heathens.  Right?

Yeah, um, no.

Perhaps if AutismNewsBeat wants to use his style of "education", he should stick to the on-line world where people can filter out what he is saying and he can't spoil the discussion for everyone.  Or does he feel that it his right to disrupt events that he disagrees with?

TACA did the right thing.

Friday, February 26, 2010

Neurodiversity : A Manifesto by Nick Dubin

As covered on Autism's Gadfly, there was an article published in the January-February issue of Autism Asperger's Digest that is called "Neurodiversity : A Balanced Opinion".

If you have ever had any questions about what the moderate members of the neurodiversity movement believe and stand for, you will want to read this article. The text is available from GRAP's web site.

If you ever doubted that neurodiversity can be harmful, you should read this article.

I am not going to go into the issues in depth, but I wanted to to highlight certain parts of the article.

The author is Nick Dubin, an adult in his early thirties who was diagnosed with Aspergers six years ago, when he was 27. I do not doubt that Mr Dubin has this diagnosis, but I think it is important to note who he is and what he has accomplished. If you look at his bio on the GRASP site, you can see that he is very well educated -
Dr. Dubin has a Bachelor's degree in communications from Oakland University, a Masters degree in special education from the University of Detroit Mercy and a Specialist degree from the Michigan School of Professional Psychology, where he recently earned his Doctorate in Psychology
and quite accomplished, especially for one so young -
Dr. Dubin authored three books and produced three DVD's, all relating to the autism spectrum. Dubin has been featured in Hour Detroit Magazine, CBS Detroit, Signature Magazine, Radio Disney, The Detroit News, National Public Radio and on Fox 2 (Detroit). Dubin also contributes to the Autism-Asperger Digest as a collumnist and has presented at over 80 conferences and seminars, including as the keynote speaker for the Autism Society of Michigan's fall conference and as a two time presenter at the Autism Society of America's national conference. He also serves on the board of directors of the Asperger Society of Michigan.
I don't know about you, but I, like most parents whose children have autism, am worried about my children being able to express themselves or (hopefully) live independently.  I hope that one day they will be able to attend college and have successful lives.

I don't think Mr Dubin's experiences are normal for a person with autism - or even for most "typical' adults.  I believe this sets the tone for the rest of the article, a tone which I believe can be summed up as -

Night, meet day.  Day, pretend night doesn't exist.

So onto the text.  What did Mr Dubin have to say about his experience with diagnosed with autism?
When I was first diagnosed with Asperger’s at the age of 27, I was despondent and terrified. I thought being on the autism spectrum only involved deficiencies and negative traits, and that I would be relegated – without my consent – to a future of things I could never hope to accomplish. After interfacing with several autistic advocacy organizations (I now serve on the board of directors of one such group) my perceptions towards Asperger’s shifted and I began to recognize and own my own strengths. This new perspective gave me the courage to write books and articles about being an adult on the spectrum, produce DVDs, and become a national speaker.
Yes, because when my children were diagnosed, they quickly interfaced with advocacy organizations and started writing books on the subject.  Oh wait, they couldn't talk.  But I am sure that they will feel inspired to write books and produce DVDs, as soon as we can communicate with them well enough to explain the concepts.

What does Mr Dubin have to say about curing autism?
That I have been able to accept having Asperger’s, and even view it in a positive light, makes me personally reject the need for a cure. First, I believe “curing autism” is an illusory goal, an effort to eradicate something that is not yet even remotely understood or adequately defined. Second, to advocate cure would have increased my shame in having Asperger’s to the point of paralysis.
So instead of looking to "cure" his condition, he decides to write books about it. How very appropriate of him. Wait, how many other conditions do people have where they feel shame at advocating for a cure?

What does he have to say about to people who don't like this rejection of a cure?
In theory, there doesn’t seem to be a chink in the armor of neurodiversity’s philosophy. Who would argue with the notion that society should take responsibility for how it treats some of its most vulnerable but creative citizens? Or that people with autism have inherent gifts and should be respected by others?
Yupe, he is certainly right, no chinks in the armor. It is a good thing that he is encouraging society to take care of people who write books, produce DVDs and appear on television to promote their take on autism.  You know, the most vulnerable but creative citizens.  I thought for a minute there he might be talking about helping children with autism, but the neurodiversity movement discourages that.

What about the idea that autism is an disability and not just caused by societal norms?
Neurodiverse supporters counter by saying it is society that needs to learn to recognize and accommodate these differences, without having to label them as being defective or deficient. While I do not think anyone will argue with the fact that autism and Asperger’s produces some disabling consequences for the person who has it, the hotly debated question remains: what responsibility should society shoulder for this being the case?
He must be right - it is society at large that is to blame for my children having autism, right? So if "society" as a whole would just accept the fact that many children with autism have problems with communication, social skills, and restricted interests, then autism is no longer a problem, right?

Maybe it isn't quite so easy.

And, my favorite quote from the whole article - who does this gentleman idolize in the neurodiversity movement?
[Michael John Carley] serves as a true role model for people of all ages on the spectrum. His character and actions exude tolerance and respect and his efforts to serve as a bridge of understanding to those who are not on the spectrum are admirable.
Oh, you mean the gentleman who was quoted on NPR as saying -
But the change is going to be hard for some people with Asperger’s, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger’s From the Inside Out. “I personally am probably going to have a very hard time calling myself autistic,” says Carley, who was diagnosed with Asperger’s years ago.
Many people with Asperger’s take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is “somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow,” he says.
Mr Dubin is completely right.  Michael John Carley "exudes" tolerance and respect and is very accepting of differences.  I think he is about the perfect model of neurodiversity, especially what is wrong with it.

And he wonders why parents like me would have a problem with the movement.

Wednesday, February 24, 2010

Children with autism can (and should) be helped

There is a common line of thought in some quarters that children with autism will improve naturally on their own, with or without treatment, and that parents have an unfortunate tendency to credit improvements to treatments when it is really just the child's natural growth.  Take for example this instant classic -
Most likely, your child has improved, because autistic children will learn and grow anyway, just as other children learn and grow, though on their own schedule. You might even credit the treatment you've chosen, and write a glowing testimonial to persuade other parents. This will give you the satisfaction of having found "the answer", and assuage the sinking feeling in the back of your mind that you've just been played for a sucker.
In one sense, this idea is true.  A child with autism, like every other child, will continue to grow and learn on their own, with or without help.  The problem is that while these children will grow on their own, they are starting off at huge disadvantage when compared to their peers.  Even if they naturally grow at the same pace as other children they are going to continue to be behind where they should be.

But the problem runs deeper than that.  Children with autism don't grow and learn as fast as their peers.

As I wrote about a few days ago, children with autism show a slower rate of growth then their peers.  When you combine this slower growth with the fact that children with autism start out at a disadvantage what you are left with is a child that can fall further and further behind their peers and will need extra help to narrow the gap.

Or in other words, it is unlikely that a child with autism will grow far enough, fast enough to catch up to where they need to be, even under ideal circumstances.  Autism is, after all, a disorder of normal development.

You then have to ask yourself - do you want to help children with autism catch up or not?

I am not talking about the quirky behaviors of older people with autism or accepting the differences that autism causes or correcting the biological imbalances that children with autism show.  All of that is important, but I am talking about the basic skills that every child needs to know.  Skills such as listening, talking, dressing, counting, reading, and understanding directions - all of these basic skills (and many more) can be -and typically are - impaired in children with autism.

If you decide to help teach these children the skills that they need to learn (and you should) , you are going to needs a set of tools to use and plan for how to use them.  Right now, some of the best tools that we have for teaching children with autism are speech therapy, OT, and behavioral analysis based treatments (ABA).    Research has consistently shown that these tools are generally an effective way of of helping children acquire the skills that they lack and hopeful help them to catch up to their peers.

But how do we know that a specific treatment is responsible for the improvements rather than natural learning and growth?  The simple answer is that you can't know - either way you slice it.  If our children were perfect little lab experiments we could repeat the early years with or without the therapy and compare the results.  But they aren't and so there are no do-overs - you have to make the best choice you can with the limited information that is available.

The good news is that this is the sort of question that evidence based medicine is equipped to answer.  And while the question of what autism is or how it can be best treated is still up in the air, there is a large body of work that suggests that these therapies for autism are effective at teaching children with autism and improving their outcome.

But don't take my word for it.  Perhaps you should go see what the CDC, American Academy of Pediatrics, the National Institute of Health, Autism Speaks, and the Autism Science Foundation have to say about it (just to name a few).

Be a good parent and don't listen to people like the one I quoted above.  Give your child with autism the help they need to reach their potential, they are going to need all of the help they can get if they are to get past the debilitating effects of autism.

Tuesday, February 23, 2010

Children with autism may be better at expressive rather than receptive communication

A child with autism might be better at telling you what is on their mind than they are at understanding what is on yours.  This is not surprising (at least to me), but it is worth remembering when you are dealing with children who have autism.

Preschoolers with autism show greater impairment in receptive compared with expressive language abilities.
Hudry K, Leadbitter K, Temple K, Slonims V, McConachie H, Aldred C, Howlin P, Charman T.

daggerCentre for Research in Autism and Education, Department of Psychology and Human Development, Institute of Education, London, UK

Background: In early typical language development, children understand words before they are able to use them in speech. Children with autism spectrum disorders (ASD) generally show impairments in both the comprehension and the production of language. However, the relative degree of delay or impairment in each of these sub-domains may also be atypical and remains less well-understood.

Aims: Relative delay in receptive and expressive language skills was examined within a large sample of preschoolers with autism. Children's language abilities varied from pre-verbal to fluent speech.

Method & Procedures: Scores on one direct clinician assessment and two parent-report measures of language were obtained for 152 preschoolers with core autism.

Outcomes & Results: As expected, on average, the language ability of the children with autism was lower than typical age norms, albeit with substantial individual variability. On all three language measures, receptive ability was relatively more impaired than expressive ability. Higher non-verbal ability was associated with such an atypical language profile.

Conclusions & Implications: Recognition of the marked receptive language impairment relative to expressive language, found to affect at least one-third of preschoolers with autism in this sample, has important implications for interacting with these children and for informing appropriate targets in language and communication intervention.

Monday, February 22, 2010

Another week, another rant - a medical condition is not a brand

There must be something in the water or the stars must be out of alignment or some other cosmic shift happening this month, because it seems the closet elitists are coming out of the woodwork.  Last week it was Michael John Carley's I-don't-want-be-associated-with-people-who-wear-diapers as as well as a few angry aspies rants against being labeled as having autism.

This week we have a less offense but still very wrong post by Dan Coulter.  Mr. Coulter is advocating for keeping the Aspergers label separate from autism, and while that might not be a bad idea, the reasons he is suggesting for doing so are not the best.  I have no reason to think that Mr. Coulter is being malicious or purposely inappropriate in what he is saying and yet he seems to have the some very wrong ideas.

Mr Coulter's reasons basically boil to down to the following two points -
The diagnosis can help determine whether or not individuals receive services -- and whether they receive the right services. For example, a broad diagnosis can encourage a school district to use a blanket approach for autistic children at very different levels of development. More specific diagnostic categories can help ensure we give each child the support he or she needs, such as intense social skills training, or speech therapy, or accommodations in a classroom.
While he might be correct in general, he is really wrong on the details.  There is already a wide range of skills and abilities in just children with just an autism or PDD-NOS diagnosis.  They literally run the gamut from completely from children who are non-verbal, non-interactive (LFA) to one that can speak fluently and just have some social quirks (HFA)  - and everything in between.  As a result, most schools and service providers are already accustomed to look at the skills of the individual and providing  the level of support that is needed.

Keeping people with Aspergers where they are now - as part of the autism group - is not going to hurt.  And I suspect that if Aspergers because its own category, completely separate from autism, the available services would actually go down, not up.

No, I think that reason is a red herring and the real reason that Mr. Coulter's objects is this one -
And then there’s the acceptance issue. We’ve reached the point where society is becoming increasingly aware of Asperger Syndrome. That awareness has helped people explain their condition to families, friends and employers – and gain an acceptance many have yearned for all their lives. Before my wife and I went into business creating educational videos about Asperger Syndrome and autism, I worked in broadcasting and corporate public relations for more than 30 years. I know how hard it is to establish a brand and associate attributes to it. I’d hate to give up the progress we’ve made using the Asperger “brand.” I’d love to see other brands created that could help educate people about other forms of autism.
To my mind, this is yet another way of saying that we shouldn't associated Aspergers with autism because it is a distinct condition - in Mr. Coulter's words a separate brand - and people with Aspergers don't want to be lumped in the same category as lower functioning people with autism.  Let them get their own brands, he suggests.

Well, while Mr Coulter may feel it would somehow be harmful to dilute "the brand" by associating it with autism, I would like to remind him that Aspergers is already considered a form of autism.  There might be an image that Aspergers means slightly quirky but super smart but that is just a myth (unless Mr. Coulter happens to believe his own marketing propaganda).  People with Aspergers have autism as much as people with a label of autism or PDD-NOS (or Retts or CDD) do.

But don't take my word for it.  Go read what other people have to say about the difference between autism and Aspergers -
As simple background, according to the DSM-IV, the basic diagnostic distinction between autism and Asperger’s disorder is absence of clinically significant delays in language, cognitive development, and adaptive functioning in the Asperger’s group. The rest of the diagnostic criteria (impairments in social interactions, restricted repetitive and stereotype patterns of behaviors) between autism and Asperger’s is identical.
You may have the right idea, Mr. Coulter, but the way to help all people with autism is not to throw the lower functioning ones under the bus.  A medical disorder should never be viewed as a marketing brand.

Sunday, February 21, 2010

When does autism develop?

One of the many unanswered questions about autism is whether autism is something that a person is born with or whether it is something that happens or develops later. There are currently a few theories about how autism is thought to develop -

Early onset - A child is born with autism and shows subtle signs of it almost from birth. These differences grow over time until the child is noticeably different from "typical" children. It is thought that most people with autism fall into this category.

Regression - A child appears to be developing normally for the first year or two but then has a period where they regress and lose previously acquired skills and become different from other children.

Plateau - A child develops normally, without any early signs of autism or regressions, until they hit a certain point. After this point, they simply simply fail to develop new skills and stop developing normally (i.e. hits a plateau in their development)

That's where a new study, published online this month in the Journal of the American Academy of Child & Adolescent Psychiatry, comes in. This is one of the first studies to follow children and watch which ones develop autism rather than look at which ones developed autism after the fact.

The text of the study is freely available, so if you are interested in the topic I suggest you read it for yourself.

The children included in this study were selected from a larger, ongoing study of infant siblings of children with autism. For this study, researchers selected 25 children who developed autism and 25 that did not. These children came either from a high risk group (sibling had autism) or a low risk group (no siblings with any developmental disorders). Of the 25 children with autism, 22 came from from the high risk group.

Each of these children was evaluated at 6, 12, 18, 24, and 36 months using a variety of tests. The results of the tests were compared to each other and found to be in agreement. Overall, the researchers did a good job getting an accurate picture of how these children developed and what skills they had at each point in time.

The results of the study were interesting, to say the least.

The most important finding was that the children who went on to develop autism were no different from the other children at 6 months. And even more than that, these children seemed to be slightly more social than the other children at 6 months (although this result is not scientifically significant).

For the next 12+ months, the development of children in the autism group slowed down and they failed to keep up with the development of their peers. But more importantly, most of the children showed loss of skills - as in they regressed. In what could be considered a silver lining, the children did not show losses of cognitive ability or language skills as the losses appeared to be of social communication skills area.

The second important part of this study is that most of the parents (83%) did not pick up on these regressions. Keep in mind that these are mostly parent who already had a child with autism and, as such, would be familiar with what autism looks like. It is likely that they would be watching very closely for signs of autism in their younger children. This finding, if confirmed, means that parents frequently miss subtle regressions and signs of autism in their children.

The result of these findings is that our models of how autism develop may be wrong. Autism may not be present from birth in the majority of cases and might start developing sooner than we think and involve more regressions.

The researchers proposed a new theory whereby the symptoms of autism are not prevent at birth but rather appear over a length of time. Under this theory, most children have regressions but it is the timing and severity of the regressions that give the impressions of different models of onset. If the regressions happen early enough they are much harder do detect and make it seem like the symptoms have always been there. If they happen late enough, the results are much more drastic and noticeable and make it seem like it appeared out of the blue.

I think it is important to remember that this is just one study, and a smaller one at that. While the researchers appear to have been very careful these results are still going to need to be confirmed.

But, if the researchers are correct, autism may develop differently than we think.

A Prospective Study of the Emergence of Early Behavioral Signs of Autism
Sally Ozonoff, Ana-Maria Iosif, Fam Baguio, Ian C. Cook, Monique Moore Hill, Ted Hutman, Sally J. Rogers, Agata Rozga, Sarabjit Sangha, Marian Sigman, Mary Beth Steinfeld, Gregory S. Young
Journal of the American Academy of Child and Adolescent Psychiatry 8 February 2010 (DOI: 10.1016/j.jaac.2009.11.009)

Thursday, February 18, 2010

I am at a loss for words

So, if you disagree with someone's opinion, how do you express it?  If you are anything like me, you would break out the reasons that you disagree and attempt to discuss it rationally with the person.  You may not always be able to resolve your differences but you can attempt to come to a common understanding - or at the very least agree to disagree.

Sometimes online discussions can get a little heated and there is the occasional barb or insult tossed at your opponent.   But for the most part, people manage to remain civilized.

Well, apparently for  a "gentleman" named Clay this is too much to ask.

It will not come as a shock to anyone who is familiar with this gentleman but he is a prominent advocate for the neurodiversity philosophy and expresses a strong dislike for people with autism who want a cure for their condition.  He is certainly entitled to his opinion and if he kept his opinions in the realm of polite discussion, there would be no problem.

Heck, if he kept his opinions in the realm of rude discussion, there would be no problem.

But alas, this gentleman has decided that even being rude and insulting was not good enough and had to take it to an entirely new level.  In a post on his site, this gentleman has posted a song mocking Jonathan Mitchell, an adult with autism.  The song starts off with -
I am the very model of the maladaptive autistic.
I've information personal, and most of it is very sick.
My mommy taught me autism has made me really defective
And after that it gets very, very bad.  I don't recommend reading the whole thing if you get offended easily ( or even if you, like me, don't get offended at much of anything).

Mr. Mitchell was understandably upset by this post and has posted a response on his own blog.

To say that this song is beyond insulting and degrading to Mr Michell is the understatement of the century.  There is no possible excuse or justification for this gentleman's behavior - especially coming from one who advocates for accepting people with autism as they are.

None whatsoever.

This gentleman is one the sorriest excuses for a person that I have ever seen and  I am at a loss for words to describe how repugnant his actions are.

And yet, if you look on this gentleman's site, he proudly displays a "Autism Hub" member icon.  For those of you unfamiliar with the autism hub (aka the home of neurodiversity), its mission is to -
The Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include empowerment/advocay, acceptance, and a positive outlook
Welcome to the acceptance of the neurodiversity.

Tuesday, February 16, 2010

Neurodiversity : You DO NOT speak for my children

Let me first start off by saying that I know I have been talking about the following subject too much for the past week.  I promise that this will be my last post on the subject for a while.  I have several other topics that I want to write about but I seem to keep getting stuck on this one particular subject.  I hope with this one last post I will get this it out of my system...

As I said a few days ago, the neurodiversity movements seems to have reached a turning point.  Up until now they have claimed to speak for all people with autism and have presented a (mostly) unified front against those who dare question their views about autism.   If you are unfamiliar with their views, I suggest you look at some of the other things I have written on the subject as well as look as what other people have have written.  As always, do not take what I write at face value and go evaluate the information that is out there for yourself.

The fundamental idea of neurodiversity is not a bad one.  It basically says that everyone is different and rather than forcing people to comply with some idealized concept of normalcy we should learn to accept people for who they are.  A person with a condition like autism is not necessarily "damaged" or defective but rather different and, with the correct supports, they will be able to function in society as well as anyone else.  

But, like other ideological movements, the devil is in the details.  In the case of the ND movement, what started out as acceptance has turned into a rigid belief that autism is not a disorder and that it is society, not the medical condition of autism, that makes people with autism disabled.

This rigidity should not have survived past the first time one of the ND members met a child who suffers from autism.  They should have seen that it is not some sort of society norm that disrupts the ability of a young child to engage their parent and to communicate their basic needs but rather something that disrupts the biology of a rapidly growing and developing body.  This disruption continues from a young age and cascades into the condition that we call autism.  Some few people have learned to live with the condition and do well in spite of it, while others have not.

Unfortunately, this rigidity has not only survived, it has flourished.  It has turned into the idea that not only is autism not a disorder or disability but that it is a separate way of being that is, in some ways, superior to being "normal".  People with autism, usually the ones who call themselves "aspies", view their autism not as a problem but rather as a condition that gives them superior intelligence, an ability to focus, and frees them from having to worry about those "societal norms" that the rest of us have to worry about.  After all, it is job of the rest of society to accept them for their differences and it is immoral to suggest that they should have to adapt their behaviors to societal norms.

The problem is that this sort of thinking leads to feelings that one is somehow better than "normal" people or at the very least, apart from them.  These people view themselves as separate from the rest of us.  And if that is as far as it went, I would not have a problem with it.   If these people want to consider themselves different, it is no big deal to me.

The problem arises because these same people, the ones who claim that they have autism, turn around and say that they do not wish to be changed or "cured".  They view attempts to treat or cure autism as a repudiation of who they view themselves to be - it strikes at their very identity.

So they go out in force and protest against a cure, protest against "treatments" that "force" them to be something other than they are or "cures" that would rob them of their identity.  I do not have a problem with this.  If you do not wish to change who think you are, you certainly have the right.

But, it doesn't stop there.  These people claim to speak for all people who have autism in rejecting treatments and cures for their condition and there we hit the problem.

These people, ones who are mostly able to function in society and live on their own, are asserting, on behalf of everyone with autism, that no treatments or cures are needed.  They are saying that there should be no ABA or research into the biological underpinnings of autism as that is denying them the right to be who they are.  Genocide, some would say.

And yet, when they make these statements, they always seem to forget that there are those, like my children, who are more severely impacted by autism.  There are those who will not be able to have a life of their choosing, live independently, or even, in some cases, communicate at all with the world around them without extensive help.  This help takes the form of treatments like ABA and attempting to correct the underlying problems.  It also takes the form of researching the causes of autism so that, one day, it may be possible to cure the problems that autism causes so that it will no longer be necessary for people to struggle through life with hardships like these.

And then we come to the statement by people like Michael John Carley, and others like him, who take it one step further and suggest that they take offense at being lumped into the same category with "lower functioning" people with autism.  These people have no problems putting words in the mouths of my children, who are as of yet unable to speak fully for themselves, and yet turn around and dismiss them as unimportant and unworthy of consideration.

And that just really pisses me off.  

Just to be clear, this view is not held by every member of the ND movement and not every person who holds this view is a member of ND.  However, I think if you go back and look at the history of the movement, the ND movement is the source of this idea.

It is time for these ideas about autism to change. 

Monday, February 15, 2010

Don't treat me bro

Perhaps you thought I was being a little too hard on the "aspies" in my last post. Surely the aspie pride movement, otherwise known as neurodiversity, is not so bad. They are not really advocating against treating or curing something that causes such hardships in children.  Sadly, I believe that there truly is a anti-treatment anti-cure mentality embedded in the whole notion of autism pride. Here is a prime example that I ran across this afternoon.

In the Times Online yesterday there was an article yesterday that talked about a small, open label study of an oxytocin nasal spray that shows promise for treating autism. After the 13 participants where given the nasal spray they "rapidly became more open", sociable, and trusting. It will take many years and many studies to know whether this treatment will live up to the hype. But, if it does, it will one of the first treatments that will directly address one of the three core problems of autism.

This would be a good thing.

However, if you look in the comment section under the story, you run into this stinker -
As an individual with aspergers who has learned to cope well with the condition i doubt the need for a spray to conform individuals to societies standards. Many great thinkers (philosophers, mathematicians, chemists etc ..) have had autism spectrum disorders and their abilities may have been part of that same "disorder". you may try to fix autism, but i'd not want a cure...
Statements like these are at the heart of the problem with aspie pride. This is the attitude that causes someone to complain when Asperger's may be merged into the general autism category. This gentleman claims the label of Asperger's but then he wants to change its meaning from the medical definition into a label that means he is a philosopher, mathematician, or chemist - possibly even the next Einstein. He wants you to believe that he speaks for all people with autism when he claims that a treatment is not needed.

Yet it is clear that he and I are speaking of two very different autisms. I am talking about the development disorder that causes children to fall drastically behind their peers in schools, takes away their ability to communicate and to socialize, and even causes them to hurt themselves. He is using Asperger's as a shorthand way of saying "I'm smarter than you are".

I can understand taking pride in yourself (it is called self-esteem). I can understand taking pride in your accomplishments and overcoming difficulties. I can even understand taking pride in being your own person and being "different" than other people around you.  But I cannot understand taking pride in a disorder that causes so many problems for so many people and at the same time dismissing the needs of those who are most profoundly affected.

Enough is enough.

Note to Angry Aspies : You already have autism

When I wrote about Michael John Carley's bigoted statements against lower functioning people with autism a few days ago, I assumed that his comments were out of the ordinary. Surely, the higher functioning people with autism (aka aspies) would not throw their lower functioning brethren under bus over the matter of a label.

Apparently, I was wrong.  There are many "aspies" speaking out against the Asperger's label being moved under the general category of autism.

These are the same people who claim to speak for all people with autism when denouncing "unethical" treatments like ABA and equating the search for a cure for autism to genocide. And yet, when you ask them to stand with the people who they are speaking for, the reaction is a bigoted "we don't want to be associated with them".


The ironic part about all of this is that the proposed change is really a minor one. Asperger's is already considered to be part of the "autism spectrum" as it is listed in the DSM IV under the "Pervasive developmental disorder" category. All the massive change in the proposed DSM V does is eliminate the individual labels (PDD-NOS, autism, childhood disintegrative disorder, asperger syndrome) and lump them all together into the "autism" category.  The only people who don't consider Asperger's to be autism are the very people who are the people who are complaining about it being put there.

 Did I mention that these are the same people who like to pretend that they speak for all people with autism?


Over in neurodiversity land, the revelation that some (cough, most, cough) of their congregation of aspies feel this way about the "low functioning" people with autism (aka the majority of people with a diagnosis of autism) has resulted in a "oh shit" moment. 

Kev over at Left Brain Right Brain put it nicely -
There really were, I realised to my dawning amazement, people with an Aspergers diagnosis who were upset at the possibility of the DSM (V) placing them inside an overall category of ‘autism’. And not for any particularly legitimate reason but mostly because they didn’t want to be associated with the people who I’ve heard them describe as ‘low functioning’.
You don't say, Kev.  Really?  You didn't know this about your own movement?

My opinion is that he is feigning surprise and knows very well that there are people (aka, the rank and file) who feel that their Asperger's makes them somehow special and are dismissive of the majority of people with autism. But who knows, perhaps he is that badly out of touch with the movement that he helped start.

Perhaps this moment will serve as an inflection point for the neurodiversity movement and they will realize how harmful their anti-treatment, anti-cure rhetoric is for adults and children who suffer from autism.  Perhaps they will also realize that their "not a disorder - just a difference" line has encouraged attitudes like Mr. Carley's to grow.

Perhaps pigs will start flying.

Regardless, it is now completely clear and beyond a a shadow of a doubt that these aspies like these don't speak for all people with autism.  After all, they don't want to be associated with them.

Saturday, February 13, 2010

Parental refusal of pertussis vacation, take 2

Almost a year ago there was a study released in Pediatrics about parent's refusing the Pertussis (whooping cough) vaccine and how that lead to a greater risk of contracting whooping cough.

At the time, certain sites suggested that the increase of cases of pertussis that we have been seeing over the last number of years were related to more and more parents refusing the vaccine.  Or in simple terms, it was the "anti-vaccine" movement that was to blame.

Well, according to a new report from the CDC, we can put that myth to rest. According to this report, while it is still unclear exactly what is going on, there are several factors that are suggested -

1. Waning immunity
2. Suboptimal vaccine coverage
3. Improved surveillance and diagnosis
4. The switch from whole cell vaccine (WCV) to acellular vaccine (ACV)
5. Adaptation of circulating Bordetella pertussis strains.

The first reason is a no-brainer - the immunity granted from a vaccine does wear off over time (6-10 years), and no one really expects it to last for longer than that. Interestingly enough, the outbreaks that have been seen are in older children (10-19 year old), which fits well with the theory.

The second reason, well, I know the CDC publishes data on the uptake of the vaccine and I believe the coverage is very high so I don't know how much this contributes to the problem - especially since the majority of the increase is being seen in older children where the first point is more relevant.

The third reason I am not going to talk about other than to say that it seems that increases in everything are blamed on more awareness and better diagnosis.  I am sure that it plays some role, but, at the same time, give it a rest already.

With the last two reasons, I think we come to the real problem. The vaccine was switched several years back from a whole cell vaccine to an acellular vaccine. What this means, according to an article in The New Scientist is that -
A key issue is that the whole-cell vaccine contained hundreds of antigens, which gave broad protection against many strains of pertussis. But the acellular vaccine contains only three to five antigens. Our findings suggest that the use of the acellular vaccine may be one factor contributing to these genetic changes
The new vaccine does not as create as broad of immunity as the old one. And, equally important, it looks like several strains of the pertussis virus have mutated so that the vaccine no longer protects against them.

So there you have it, the most likely reason that cases of pertussis are rising is that the vaccine that is supposed to prevent it is not as effective as it used to be.

Wednesday, February 10, 2010

Rant : Michael John Carley finds autism hard to swallow

Michael John Carley, the executive director of GRASP, seems to be upset over the possibility that Asperger's will be merged in with the general autism category in the upcoming DSM V.  I had never heard of either Mr Carley or GRASP until today, and I am starting to wish that I had not.  GRASP is apparently yet another autism support organization -
GRASP is an educational and advocacy organization serving individuals on the autism spectrum
What makes GRASP unique, other than its proven seven year-old support group network, its educational outreach, and its use as an informational clearinghouse on issues relating to the autism spectrum, are the stipulations GRASP must adhere to in accordance with our bylaws — that the Executive Director, 100% of the Advisory Board, and 50% of the Board of Directors of GRASP must be diagnosed with either Autism, Asperger Syndrome, or Pervasive Developmental Disorder.
You would think that an individual who was the executive directory of an organization like this would be understanding of exactly what autism is and the challenges that individuals who suffer from the condition face.

Well, you would be wrong.  Quoting from a story carried by The Autism News today -
But the change is going to be hard for some people with Asperger’s, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger’s From the Inside Out. “I personally am probably going to have a very hard time calling myself autistic,” says Carley, who was diagnosed with Asperger’s years ago.
Many people with Asperger’s take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is “somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow,” he says.
There are so very many things wrong with these statements...

I won't even get started on absurd idea that Albert Einstein or Thomas Edison had Asperger's.

First of all Mr Carley, you are already "autistic" - that's what is means to have Asperger's.  But more importantly, I am truly sorry that you have to swallow your "Asperger's pride" and accept the fact that you will be officially on the spectrum with "those other people".  You know, the ones that have to wear adults diapers and might have to be restrained because they hurt themselves.

Because you know, some of our children ARE greatly impacted by their autism and are going to have issues to deal with their entire lives. They don't have delusions about being Albert Einstein but quite possibly might like to be able to live independently at some point in their lives.  Or at least we think they would like that - they can't exactly talk well enough to be able to say that quite yet.

I am truly sorrow that you consider it some sort of burden to be lumped in with children (or adults) like this.

But let me ask you this, Mr Carley.  Since you apparently find it "hard to swallow" that you may be grouped with "those people", what the hell are you doing running a support group for people with autism?

OK, now that I have that out of my system I feel much better.

Sunday, February 7, 2010

Comparing regressive to non-regressive autism

I did not read this (yet) but it looks very interesting -
Children with autism spectrum disorders: a comparison of those who regress vs. those who do not.
Johnny L. Matson, PhD, Jonathan Wilkins, Jill C. Fodstad
Objective: While autism spectrum disorders (ASD) constitute a group of similar conditions, considerable heterogeneity in symptoms of these neurodevelopmental disorders have been noted. One of the most important, yet least studied, of these factors is developmental regression.
Methods: One-hundred and twenty-five children were studied and broken down into the following three groups: ASD children with and without substantial regression and typically developing children. In study one, the three groups were compared on global measures of ASD symptomatology, comorbid psychopathology, challenging behaviour and social skills. In study two, the two ASD groups were compared on each individual item from the dependent measures.
Results: Mean age when regression occurred was 27.76 months. The ASD children as a whole differed from the typically developing controls, showing more symptoms of ASD, as would be expected, and poorer social skills, while differences were also noted between the two ASD groups.
Conclusions: It was determined that children with ASD who regress present with a distinct behavioural profile when compared to children with ASD who do not regress, which included greater levels of impairment on global measures of ASD symptomatology, comorbid psychopathology, challenging behaviour and social skills.
It has long been thought (or speculated at least) that children who regress into autism are different than children who show signs of it from birth or simply fail to acquire skills when they should.  Yet, there has not been much research into the exact differences between the two groups.  This is one of the first studies that I have seen that says that there is a behavioral difference between the groups.

It is my belief that this regressive group is more likely to have a form of autism that is "triggered" by something rather than to have a purely genetic form and should be broken out separately from other forms of autism in research studies.  Yet, up until now, I have not seen anybody suggest that it would be possible to separate the two groups.  Perhaps it would be possible if regressive autism has slightly different behaviors associated with it.


Experts vs Bloggers

When it comes to health information online, who should you believe? According to a "study" reviewed on Science Daily in "Health Stories by Experts More Credible Than Blogs" -
Health information written by a doctor is rated as more credible when it appears on a website than in a blog or a homepage, according to a study of college students.
Makes sense to me.

There is definitely something to be said for information that is written by a knowledgeable professional when compared to what is written by someone like me. Professionals, such as doctors, should have a more in depth understanding of a topic area and be able to provide more accurate information.

But, if you notice the the exact wording of the story, they don't say "accurate", they say "credible". Credible means "able to be trusted or believed". So, how did the researchers go about proving that experts are more trustworthy that us mere bloggers? Simple, they told them.

The researchers picked two controversial topics and gave a group of 555 college students screenshots of one of the articles. The articles were attributed to either a doctor or a layperson and the students were told that from either "a formal website, individual homepage, a blog, a bulletin board -- a chat site where people can post messages -- or were simply told that they came from the Internet". Not surprisingly, the students decided that the articles written by a doctor and appearing on "formal websites" were more credible than those from a random person with a blog.

Did you catch the trick?

Let me phrase it a different way. If I show you two clippings, both from the the New York Times, but tell you one is from the New York Times and the other Bob's Smalltown Paper, which are you going to find more credible? If you are like most people, you will say the one from the New York Times. The reason isn't that one article is more accurate than the other but rather that the New York Times has a better reputation than Bob's Smalltown Paper.

In the case of this study, the students were told that one of the authors was an expert while the other was some random person on a blog, homepage, or chat room. The students did not get a chance to look at the context of what was said, did not get a chance to evaluate other things that the same author wrote, nor could they look at the other content on the site to establish a reputation. If you take all of these things away and replace it with your own implied trustworthiness (in this case expert vs non-expert), you should not be surprised when someone picks who you tell them is more trustworthy.

The bottom line is that context matters and you should never blindly accept what you read online - even if it is written by "experts".

Wednesday, February 3, 2010

Bias in research (and now a word from our sponsors)

Flickr Photo by sflovestory
When I think of scientific research, a picture comes to mind of a person (women or man) standing in a laboratory performing some sort of experiment and carefully recording empirical results documenting the outcome of the experiment. They then sit down with the data and examine it with an impartial eye to see if it supports their theory.

I know this is somewhat of a hokey image but to me it speaks of what a researcher should be - impartial, unbiased and disinterested. Science is meant to be a search for the truth (or as close to it as we can get) and we should not be so attached to an idea that we are unwilling to go in a new direction when the data takes up there.

And yet, I am seeing more and more that this process is being subverted by the groups that are sponsoring the scientists. I am not saying that this being done intentionally or maliciously, but rather it seems to be a byproduct of the system of the funding. Think about it, if a corporation gives you money to fund research and you publish research that is critical of their products or industry, how likely are they to give you additional funding in the future? And what is a corporation going to do with results that are not favorable?

Consider the two following reviews.

The first one1, published this month the Journal of Alzheimer's Disease, reviewed 43 published studies and looked at the relation between cigarette smoking and Alzheimer's. The review of each study not only considered the quality of the data and outcome but also the affiliations of the authors of those studies.

Of the 43 studies, 11 of them had affiliations with the tobacco industry. The studies that were affiliated with the tobacco industry showed that cigarette smoking did not increase the chance of developing Alzheimer's and might even help prevent it. On the other hand, the studies that were not affiliated with the tobacco industry showed that it was likely that smoking greatly increased the chance of developing Alzheimer's.

It is not unusual for studies to show conflicting results, that happens all the time. What is unusual (or perhaps not) is for the results to align so closely with a funding source. So when it comes to the risks of smoking, are you likely to believe a researcher receiving funding from the tobacco industry, or one that is not?

The second study2 (thanks Maria), published last year in BMJ, looked at 259 studies of the effectiveness of the flu shot. The researchers were looking for relations between study quality, take home message, and funding source.  Ignoring the conclusions about the flu shot's effectiveness (better studies said less effective), the researchers found a relationship between industry funding and higher quality journals.

If a study was funded by industry it had a better chance of being published in prestigious journals where it would, presumably, be cited more and have a larger impact on future work. Or in other words, work sponsored by industry is more visible.  I wonder what would have happened if any of the studies showed results that were not as favorable. I would be willing to bet that they would be published in a less favorable journal, if at all.

There have been countless other examples of misdeeds recently, from ghost writing to journal companies publishing entire journals that are little more than paid advertisements. When you put all of the facts together, I think it becomes clear that there is a problem.

The problem is not that corporations are attempting to achieve their goals - that is what they are supposed to do.  If they weren't trying to sell something and make money, they wouldn't be in business.  No, the problem is the mismatch between what science is supposed to achieve and what a company is trying to do.  Corporate sponsorship is tainting scientific research and biasing the results toward corporate goals.

So remember, the next time you hear about some exciting bit of science, consider whether it is a legitimate scientific result or a message from the sponsors.

1: Cataldo JK, Prochaska JJ, Glantz SA. Cigarette Smoking is a Risk Factor for Alzheimer's Disease: An Analysis Controlling for Tobacco Industry Affiliation. J Alzheimers Dis. 2010;19(2):465-80. PubMed PMID: 20110594. Journal link

2: Jefferson T, Di Pietrantonj C, Debalini MG, Rivetti A, Demicheli V. Relation of study quality, concordance, take home message, funding, and impact in studies of influenza vaccines: systematic review. BMJ. 2009 Feb 12;338:b354. doi:10.1136/bmj.b354. Review. PubMed PMID: 19213766; PubMed Central PMCID: PMC2643439. (Open Access)

Tuesday, February 2, 2010

Who uses complementary and alternative medicine?

Flickr Photo by Auntie P
If you listen to certain people you would think that parents who use alternative or complementary medicine (CAM) with their children are uninformed, easily confused people who are so desperate to help their children that they would be willing to try anything.

But is that really an accurate depiction? According to a study 1 published this month in Pediatrics in might not be.

There seems to be a great deal of misunderstanding as to what exactly is meant by CAM. The National Center for Complementary and Alternative Health (NCAM), a division of the National Institute of Heath (NIH), defines CAM to be -
Complementary and alternative medicine is a group of diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine.
which includes a long list of therapies. For a complete list, look at the site I link above. What is interesting is that vitamin supplements are not included on the list of "alternative" treatments anymore, they are accepted my mainstream medicine.

In the study, the researchers looked at CAM use in children under 18 as reported in the 2007 National Health Interview Survey. According to this survey over 8 million children in the US (over 10%) utilized some form of CAM in 2007. Like the definition from the NCAM, this study excluded vitamins and mineral supplements saying "vitamins and minerals are used routinely for preventive care in pediatrics."

Just to be clear, when you give your child a simple multivitamin or some other vitamin on the advice of a doctor, you are not engaging in some alternative form of medicine. This falls under mainstream medicine now. (Well, unless you are using mega-doses of vitamins or something else strange than it would still be alternative)

So, according to the survey, who is using alternative medicine these days with their children? Is is desperate, uninformed parents who are willing to try anything?

In a word - no.

The researchers found that CAM use was higher in wealthier families and where one or both parents held a college degree. The children were more likely to take prescription drugs and be covered by private insurance. They were also most likely to have chronic health problems such as ADHD, allergies, asthma, dermatologic conditions, developmental disorders (including autism), fever, gastrointestinal conditions, headaches, insomnia, or learning disabilities, just to name a few.

Or in other words, educated middle class parents who are looking for extra ways to help their children deal with chronic issues.

Not what you would expect.

1. Birdee GS, Phillips RS, Davis RB, Gardiner P. Factors Associated With
Pediatric Use of Complementary and Alternative Medicine. Pediatrics. 2010 Jan 25.PubMed PMID: 20100769. doi:10.1542/peds.2009-1406

Monday, February 1, 2010


In case you didn't notice, I added an experimental feed from twitter on the top left of page.  I have to confess that I am a bit of a Luddite when it comes to using newer services like twitter.  I don't have any reason for being twitter-phobic, I just never really looked at it.

Anyways, I bit the bullet and set up and an account on twitter and plugged the feed onto this site.  My goal is to use it highlight things that I run across that are interesting but I don't have the time to write about.  We will see how it goes.  If you find it interesting or useful, please let me know.

And speaking of twitter, I started poking around to see how other people are using twitter to talk about autism and ran across the following tweets from someone calling themselves AutismSheri.  This person's bio says that they are "out to prove to the world that Autistic people are awesome!" and some of their messages are, well, interesting to say the least -
PPL! #Autism Say what u want 2 me,I care NOT! Hurt 1 Autistic person who reads ur CRAP&U WILL deal with me! Autistics Rock! Acceptance PPL!
PPL! I'll say this again! #Autism There is none so TRULY BLIND as those who CAN'T C the BEAUTY&LIGHT that is an AUTISTIC PERSON! GodBless:-)
PPL! #Autism I'm NO hero,NOR am I here 2 SAVE any1! We do NOT need SAVING, WE NEED ACCEPTANCE! WAKE UP PPL! Autistics Rock! God Bless! :-)
PPL! #Autism If u refuse 2 ACCEPT ur child, Do u really think others around u will! U CAN'T change bin AUTISTIC! ACCEPTANCE Is Key! WE ROCK
There are many more messages like these.  I am guessing the point is to accept autism and not treat it, that autism is related to the hard substance that the Earth is made of, or that people with autism glow in the dark - I can't be sure from the limited context.  I don't remember ever seeing my children glow in the dark but maybe they only do it after we go to sleep...

People will be people no matter were you go and I guess when you only have 140 characters to complete your message I guess you turn down the brain cells and turn up the emotion.

If this is the best that twitter has to offer my experiment may be short lived.