ASAN on Non-Verbal Autism

Just in time for the holidays, the Autistic Self Advocacy Network (ASAN) has put out a new video promoting its views of autism.  The video is pretty much in line with most of what they have said in the past but there is one very prominent theme that I wanted to talk about.

So, first thing first, if you haven’t seen the video, go watch it here. 

Did you notice how non-verbal autism was portrayed?  If you missed it, here are a few lines from the video about what it means to be non-verbal -

People know what "nonverbal" means: I can't speak, so I use my computer to communicate.

Even though I couldn't talk, my parents believed that I could understand speech.

My parent's got me a computer so I could speak with them.  Once I learned to type, I never stopped.  Now I have conversations with my family every day.

The presumption in all of these statements is that, even though a person is non-verbal because of autism, their language ability is intact.  That they can still understand language when someone uses it with them and will be able to demonstrate that ability if given the proper assistance.

Unfortunately that presumption is badly wrong and, quite frankly, very damaging.  When a person is non-verbal because of autism it is because autism is disrupting their ability to receptively understand and expressively use language.  This disruption is pervasive and will likely impact their ability to use language in any form.

What the video seems to be referring to is a form of verbal apraxia which is another disorder that is sometimes (but rarely) co-morbid in autism.  In this disorder the person has problems speaking, i.e. verbally using language, because they have problems producing speech.

It can be difficult to tell the difference between apraxia and non-verbal autism because there can be so much overlap and only a specialist is going to be able to make a proper differential diagnosis.  But there are few differences that you will typically see.

People with apraxia will typically have the ability to receptively understand language and the ability to expressively communicate using methods other than speech. 

People with non-verbal autism don’t typically have a problem making the basic sounds of language or putting those sounds together to form words but rather are unable to use those tools to emit language.

But perhaps the most important difference is that the conditions need to be treated differently.  I don’t know that much about treating apraxia but I do know that to teach a non-verbal person with autism to communicate you have to try and teach them how to use and understand language.

Over time you would expect, given the proper help, that people with either condition will improve and find ways to work around their disability.  But if you are expecting a non-verbal person with autism to be able to suddenly one day type fluently with both hands and use perfect language to express complex philosophical ideas about why Autism Speaks doesn’t represent their views on autism, you are going to be disappointed.

It takes a long time and a lot of hard work to learn to use language and it doesn’t happen simply because someone reads to them and they see letters as colors.

I know from personal experience that my two mostly non-verbal twin daughters have made significant progress over the years.  They can now understand simple ideas when someone talks to them, they can repeat most words, they can say simple sentences, they can write words, they can read aloud, and they can even type.

But what they can’t do yet is use language in any form to express more than the simplest thoughts, hold even a simple conversation, or use language to learn abstract ideas.  The disruption in their ability to use and understand language is profound and is at the core of their autism.

The twins, along with their more verbal younger sister, fall into the part of the spectrum that involves severe language disruptions.  This part of the spectrum makes up at least half of all cases of autism. 

One of the things that I have learned over these past eight years is that the one thing you can’t do is sit back and expect that the person understands language or is going to regain the use of language on their own. 

You can’t just “accept” the person is different and keep throwing incredibly complex language at them and hope they will learn.  The available evidence suggests that doing so can hinder a child’s ability to learn to use language.

The good news, if there is anything good about language issues, is that there are quite a few good resources for how to approach the problem.  For example, this book covers the basics of how to work on teaching communication and, if you want a a primer on what is known about the language disruption in autism, I would recommend this book.

But keep in mind that with even the best methods and using a variety of supports and accommodations that is it going to take a while to overcome the non-verbal aspect of autism.

A Tale of Two Communities

An inconsistency concerning Autism Speaks has been bothering me for a while now and, in light of the controversy surrounding the organization in the past week, I thought I might take this opportunity to write about it.

There is this idea that I have seen repeated in numerous places online that the "autism community" isn't all that fond of Autism Speaks.  Whether it is the "pro-vaccine choice" community, the "anti-cure" "just a difference" groups, the "independents" in between, or whatever group you want to talk about, everyone seems to say that they either don't like or are ambivalent about Autism Speaks.

And yet Autism Speaks is the largest and most successful autism organization in the world both in terms of influence and broad financial support.  I thought at first that this success might be due to government funding or the like.  But no, if you look at the organization's audited financial statements, you can clearly see that most of their funding comes from the walks and other retail programs.  Or, in other words, Autism Speaks enjoys broad public support.

One of these things is not like another.

Either Autism Speaks isn't being funded by the "autism community" but rather another group that cares about autism and yet isn't the "autism community", the "autism community" is not being truthful about its support for Autism Speaks, or the "autism community" that is talked about online is really only a small part of the actual community.

If you have ever been to an Autism Speaks walk, I think the answer to the inconsistency would be clear to you.  I have been to a couple of the walks and the overwhelming majority of people there were there because autism directly impacted their lives in one way or another.

Just keep that idea in mind the next time you read about how "we" the autism community like or don't like something.  The real autism community is much bigger than what you read about online.  It may not be quite as vocal as the online community but sometimes, like when it comes to supporting Autism Speaks, it can speak volumes with its actions.

Missing the Point

A couple of days ago an article written by Suzanne Wright appeared on the Autism Speaks blog entitled "Autism Speaks to Washington - A Call for Action".  The point of the article was that autism is not only a growing problem but one that needs a national response to solve.

Parts of the autism community have been less than amused by the article.  They are currently in the middle of having a collective conniption and declared that Autism Speaks is the new incarnation of the (insert your particular incarnation of ultimate evil here).

While it is possible that Autism Speaks should have been more sensitive to the particular sensitivities of this small yet very vocal group, I don't think what they said was that far off base for most autism families.

Since I might be the only one who thinks so, let me explain exactly what I see as the message in easy to digest points -

1. The number of children diagnosed with autism is growing rapidly.


2. Autism is hard on families.  Many families struggle on a day to day basis with autism and are doing little more than treading water.


3. Autism is extremely expensive in financial terms for everyone and in emotional and health terms for families.


4. The outcomes for children with autism are poor and taking care of someone for their entire life is pretty expensive.

So ...

5. We need a coordinated, national plan that covers everything from early detection to appropriate/best treatments to dealing with what happens when these children become adults.

None of those points should be controversial ... and yet for some reason they are.  In my humble opinion, the part of the autism community that has an issue with these ideas need to get their collective heads out of their asses and start becoming part of the solution rather than being part of the problem.

The primary argument against these points seems to be that there was not sufficient language in the post indicating that the points don't apply to everyone with autism.  My response is that that argument would apply to anything that anybody has ever said about autism.  

There is not a single statement that you can make that would apply to everyone that has autism.  There is not even one single trait that everyone with autism shares.  So, by this logic, every single thing that anybody has ever said or written would need to be changed to indicate that they are only talking about a subset of autism.

For example, in his response to the Autism Speaks post, John Elder Robison says - 

"We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated."

Clearly he is committing the exact same sin that Autism Speaks did - he is making blanket statements about people with autism without quantifying that he is only speaking for some people with autism.

If there is one thing that drives me nuts it is hypocrisy.  Another is pretending reality isn't true because you don't like it.  So no matter how much Mr. Robison's royal "We" doesn't like hearing that they are part of an epidemic, the reality is that the number of people diagnosed with autism is growing rapidly for unknown reasons.  Go look up what the word "epidemic" means.

Someone asked me on another blog if there is a way to have an honest conversation about autism and my answer was no.  It is not currently possible to have an honest conversation because to have any honest, open conversation you can't start from the position that one side's view are wrong.

When it comes to autism, you have to be able to be free to describe the problems associated with a medical label without someone taking offense because you said something that they don't like or don't want to believe.

More importantly, when you are talking about public health issues such as autism you either start your conversations based on reliable, accurate information or you don't.

If you don't then don't waste anyone's time pretending that you are talking about anything other than your own ignorant opinion.  If you do then start with the basics about the autism population as a whole.  Start by answering some simple questions about autism such as -

1. How many people are receiving a diagnosis of autism and how quickly is the number changing?


2. What are the known, proven causes of autism and the increase?  Not the "we think", "it looks like", "it could be" but rather causes that can be demonstrated and can be shown in multiple data sets.  For example you can't say its older parents without demonstrating empirically that the parents of children on the spectrum are in fact older, ruling out other possible related factors (i.e. the association between socioeconomic status and the age that you have children), and showing exactly how older parents lead to biological changes that lead to the behaviors of autism.


3. What are the typical impairments in communication and how severe are they?  How many people have the ability to use functional communication at all, how many can carry on even simple conversations, how many can have complex conversations?


4. How many people are functionally impaired enough by their autism that they have or appear to have intellectual disability?  How many appear as borderline intellectual disabled?


5. How many people go on to develop other, related conditions such as epilepsy that are much more common in autism?


6. As the children become adults, what happens to them?  How many are able to live independently and hold down a job?  How many are unable to take care of themselves?  Where do the ones that are unable to take care of themselves live?

Start answering these questions for yourself from reliable, evidence based sources and ignore the autism talking heads.  Don't take theories from people who have a stated ideology, whatever that ideology might be, at face value. And for heaven sake, don't assume that someone is an expert on autism because they have or claim to have autism.

Go to the original sources and think for yourself.

If you do that and put in the time learning about the reality of autism rather than the feel good or doomsday nonsense that comes from so many sources then you might start understanding that the Autism Speaks post isn't that far out of line with reality.  It isn't a pretty or particularly happy reality or one that I want to embrace.  But the thing about reality is that it doesn't require us to believe it in order to be true.  

As much as I don't like Autism Speaks, the post was right.  Autism is a growing public health crisis and one that we ignore at our own risk.  

Stimming

Stimming is harmless, right?  Maybe it is just me but it sure seems like many autism self-advocates think that stimming is something harmless or is only a problem because of other people's opinions.

Here's one recent example -

But people tell autistic kids not to stim in public all the time. Again and again I see conversations and articles insisting that stimming–or if they’re trying to be politically correct, certain types of stimming– isn’t appropriate public behavior.  

Really? And why is that? Who exactly does stimming embarrass? Not the autistic person who’s doing it. 

The idea here is that stims happen, can't be controlled, and that the only reason that parents try to stop stims is that they are embarrassed.

Here's another one that is so hyperbolic that it would be funny if it weren't so sad -

Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you... 

if you... 

if you...

The overriding theme of this last one is that stopping or redirecting stims to tantamount to child abuse.  Yes, the point is that the common phrase "quiet hands" is somehow taking away this person's voice.  And here I was under the impression that it is autism itself that causes problem with expressive communication.  Silly me.

I could go on to point out other examples of this meme but I think you get the point - stopping stims is bad.

As a parent whose children who have to struggle with autism, I couldn't disagree more.  Stims are not some harmless thing that can be ignored.  Stims can and regularly do stop a person with autism from being able to function or learn.  And, in some cases, stims can directly harm a person or put them in harms way.

Normally I would just let these things go and simply ignore what is being said.  The people who are making statements like these presumably have a diagnosis of autism and know how their personal stims affect their daily lives.  I might think that they take an extremely shallow view of stimming and what it is like for people who aren't quite so high functioning but I don't like to nitpick what people with a disability say about their disability.  Especially since a lack of understanding of what others are thinking or experiencing is a large part of the disorder that they are struggling with.

However, this time I ran across that first article because someone pointed it out on twitter and highlighted it as a "great post and discussion".  This person, in my opinion, really should know better and should understand the nuances and issues surrounding stimming in autism.

But apparently that isn't the case.  Apparently the idea that stims are harmless is gaining traction and acceptance even among people who should know better.  So lets talk about what is wrong about that idea starting with a definition of what a "stim" is.

A stim is any behavior whose purpose is self-stimulation.  The behavior is typically going to target or involve one of the following things -

1. One or more of the five senses (sight, hearing, taste, touch, smell)
2. The vestibular sense (balance, movement, acceleration)
3. Pain or pleasure
4. Anything else that can induce a feeling or sensation

In one sense, everybody has stims because everybody has behaviors that are designed to stimulate themselves.  But there are very clear differences between a "typical" person's stim and an autistic stim and these differences come down to a matter of choice and a matter of degree. A "typical" person can control their behaviors and can choose when and where to engage in them.  They control their behaviors, their behaviors don't control them.  

In autism, there is a definite lack of choice and a definite lack of ability to control the level or degree of the stimulation.  Stims happen for a variety of reasons, some internal, some external but the person with autism doesn't necessarily have the ability to rein in or stop the behaviors even if they wanted to.

So, the question is then why do parents try to get their children to stop stimming?  If it stimming is really a compulsion that people with autism are being forced to do or a way of dealing with some external factor, why do mean parents like myself try to squash it?

The short answer is that the cause, effect, and context of the stimming very much matters.  Stims happen for a variety of reasons, have variety of effects, and both the cause and effect can change depending on the context of what is going on when the stim happens.  You can't make blanket statements about a stim being good, bad, or harmless without considering the whole picture.

Another reason to address stimming is to give the child the ability to recognize what is causing the need to stim, giving them the skill set to deal with the stim, and teaching them to better regulate themselves and their environment so that they can function better.

Though the overriding reason, to me at least, is to give the person the ability and option of controlling their behaviors rather having their behaviors control them.

Let talk a little bit about the cause, effect, and context of stimming and why it matters starting with some common causes of stimming.  Here is a short list of some common causes -

1. Sensory overload or underload. One of the things about sensory processing in autism that is often overlooked is that the sensory imbalances goes both way - there are sensory avoidance issues as well as sensory seeking issues. A stim can be caused by a need for more sensory input as easily as it can be caused by too much input.


2. An external factor that increases the person's level of stress, anxiety, fear, or some other mental state.  This reason is really about a failure of self-regulation - something else happens and the the person has no way to cope with the situation and resorts to stimming to relieve the pressure.


3. An internal failure of self-regulation.  This is an internal failure to self regulate some aspect of a life and this failure leads to stimming.  A couple of examples would be not sleeping at night, not eating when hungry, or not stopping to rest when tired.


4. Biological imbalances. People with autism can (and often do) have certain biological imbalances that can lead to the need for stimming. For example, pica or mouthing can be caused by iron deficiency.  


5. A compulsion for the stimulation, i.e. a repetitive behavior.  Another way of looking at this is that the stim and resulting sensation is addictive - the person craves the sensation and doesn't feel right without it.

As you can see, there are many different and varying reasons for stimming.  The above list is far from complete but each of the causes on the list needs to be addressed differently.  You can't address a sensory issue the same way as you address anxiety nor can you address iron deficiency the same way as lack of sleep.

The point is to properly evaluate and address a stim you need to get some idea of why it is happening, what a person is avoiding, or what they are getting out of it.

Along those same lines, an increase in the number or types of stims can point to a some new problem or issue that needs to be addressed.  If you are dealing with a person who is either non- or minimally verbal then this change might be the only sign of the problem.  For example, my children are sensitive to noise so they have a "stim" where they hold their ears.  However, if they start holding their ears more than normal than it can be a sign that they have an ear infection.  Or it could be a sign that something else is stressing them out.

Lets move onto the effects of a stim.  Simply put, the effects of a stim are as varied as the forms of the stims themselves.  But, in general, you have to consider the following questions when evaluating whether a stim needs to be addressed -

1. Does the behavior interfere with the person's ability to function or learn?
2. Does the behavior interfere with another person's ability to function or learn?
3. Does the behavior harm the person or does the behavior pose a safety risk?
4. Does the behavior harm another person or does the behavior pose a safety risk?

The overall goal of addressing stims is to stop or redirect behaviors that stop a person from being able to function or learn.  For example, if you have a child at school who can't sit in a chair and has to constantly move about the room and scream, then they are not going to be able to function and learn at school.  If you put them in a mainstream classroom then their behaviors might stop the other children from learning as well.

The goal is also very much about stopping the child from endangering themselves or others.  Contrary to popular myth, flapping, spinning, and humming aren't the most common stims.  There are quite a few others and many of them can be downright problematic.

To give you an example, two of my daughters have a stim where they hit or push on their chins with the palm of their hands when they are either stressed or tired.  If they are "just" pushing on their chin it isn't the end of the world but it certainly isn't good for them.  However, it is a short step from just pushing to slamming their palm into their chin and that could cause some real damage.  As a result, we do not tolerate that particular stim and stop them every time we see them start it.

The last part of the equation is that the context of the stim can influence or change both the cause, effect, and acceptability of a particular stim.  Some stims are going to be perfectly fine in one situation but very problematic in others.  Take for example the common stim of flapping.  Flapping comes in many forms, from a simple hand movement all the way up to moving the entire arm rapidly.

Flapping is harmless, right?  Well, yes and no - it all depends on where you are and how you do it.

If the person is at home and relaxing them flapping is probably going to be harmless and shouldn't be stopped.  But what if they are standing close to someone and their flapping involves their entire arms?  What happens if the person is standing in a crowd of people and starts hitting people around them with their flapping arms?

Taking it one step further, when a person is flapping they usually are paying less attention to their surroundings.  So what happens if a person starts flapping while they are crossing a street or walking through a parking lot and stops paying attention to the cars going past?

Neither one of these is a contrived example - we have had both happen several times to the point where we have had to work on getting the kids' flapping under control - and flapping is a relatively harmless stim.  There are stims that are far worse and more impairing than flapping.

The final part of the puzzle is what you do about problematic stims and this is the major bit that self-advocates don't seem to get or understand.  Children with autism do not learn like typical children.  You can't necessarily just talk to them about what part of a stim is a problem or when it is or isn't appropriate like you could a "typical" child.

At best the child with autism might have trouble applying what you saying when faced with the urge to stim, at worst they won't have the functional communication to understand what you are trying to explain.  This is why many parents use one of the forms of behaviorism to help them teach their children.

Two of the core ideas with behaviorism is that you have to be consistent and that you start with small, manageable bits of behavior and work your way up.  You don't start with a problematic stim in the most stimulating and stressful environment, you instead start teaching them to control the stim in a more relaxed, less stress environment and work up to the harder environment.  And, if the child doesn't have the ability to understand that different locations have different rules, you have to consistently stop or redirect the stim every time that it appears.  Alternatively you establish one place were the stim is allowed and stop it everywhere else.

I've really just scratched the surface of the issues involved with stimming in autism but I hope the point is clear.  Stimming is not a one dimensional "the parents are just embarrassed" sort of issue and any discussion that just focuses on that is not a "great discussion" of this complex issue.

Autism-Vaccine War Reaches New Height of Stupidity

Can the vaccine-autism wars on the Internet get any more absurd?

Dan Olmsted - "Non-believers are Nazi sympathizers" -

The report goes on to quote the DeStefano/CDC study about how the antigens in vaccines don't correlate with a risk for autism. Even in the self-protective annals of the CDC, this study is a stinker. 

But putting that aside, the fact that Jalen fell off a developmental cliff TWO OR THREE DAYS after vaccination ought to make somebody in the editing room at that TV station, or some mainstream outlet somewhere, sit up and take notice. 

This happens all the damn time, people! These kinds of parental accounts, combined with the $2 billion plus awarded in vaccine court, including to Hannah Poling; the known properties of vaccination, and the concommitant rise of mercury and vaccines with the autism epidemic, are far more than enough to start asking tough questions. 

It's not going to be very PC to say this, but one of the most vivid images from the end of World War II is the Allies making local villagers walk through a newly liberated concentration camp. The message was -- how can you say you did not know?

Orac, aka David Gorksi - "You hate your children" -

It’s very clear that many antivaccinationists hate autistic children. The language they use to describe them makes that very clear. Such children are “damaged” (by vaccines, of course); the parents’ real children were “stolen” from them (by vaccines); they are “toxic” (from vaccines); the “light left their eyes” (due to vaccines). Autism is an “epidemic,” a “tsunami,” even a “holocaust,” with “denial” of that “holocaust” being equivalent to Holocaust denial. All of this likens autism to a horror on par with these calamities, and paints vaccines as the instrument of annihilation of antivaccinationists” “real” children.

Both arguments are full of it.

Any possible connection between vaccines and autism is not straightforward and obvious.  Yes, there have been some high profile cases of vaccines being implicated in autism but no one has been able to document a larger or more widespread relationship.  Just because the average doctor, parent, or journalist follows the lead of the experts in the field - experts who have served them well - does not mean that they are akin to Nazi sympathizers.

And on the flip side, the idea that talking about perceived damage to your children means that you hate them?  I don't think I quite have the words to describe how utterly stupid that argument is.  I'm not quite sure what sort of person hears a parent say that they think their child was injured and turns around and tells them that they must not love their child.

I think this comic from SMBC sums up the current state of the autism-vaccine wars quite well and, if the above exchange is any guide, we might be close to the optimal solution in the final frame-

For Sale : Extra Autism Awareness

Today, April 1st, I am holding a sale on autism awareness.  As you might know, tomorrow, April 2nd, is the sixth annual autism awareness day.  I find myself with some extra autism awareness, having accumulated the equivalent of over 50,000 days of autism awareness in just a few short years, so if anyone finds themselves a little short, I am willing to part with some awareness.

If you are interested in some of my accumulated extra awareness, you will have the chance to experience, by proxy, the purely happy, wonderful little girls that are my children.  You will be in awe of what they can do in spite of facing significant challenges from autism and how hard they are willing to work to get past their limitations.

You will get to experience the joy when they manage to break through one of the limitations that autism has placed on them and be able to get to know them in a whole new way.  You will have the chance to know that they are not defined by their autism and that they are their own individuals, whole and complete, even if they cannot always show it.

You will have to look far and wide to find awareness of sweeter, more lovely, or affectionate little girls.  Everyone who has ever worked with or known any of the three has quite literally fallen in love with them, for good reason, and you will too.

However, there are a few disclaimers that I am obligated to include as well.

You will come to know and love the slogan "sleep is for the weak".  If you enjoy actually getting a solid eight hours of sleep a night or having the opportunity to have uninterrupted sleep more than once a week, this is not the awareness for you.

If you are the sort of person who is unable to put aside your affection and love for your child and do what is in their best interest, then this is not the awareness for you.  You will have to experience the emotional consequences for acting in a way that will best help your child while not wanting to do it at the same time.  Remember, it isn't about you, it is about the children.

You if would like to grow old gradually or gracefully and not start looking old before your time, then this is not the awareness for you.  Seriously, when you get your hair cut the white hair will make it look like it is snowing.

Most importantly, if you have dreams of there ever being a time when you don't have to worry about the future or having a time when the awareness can fade, then this might not be the awareness for you.  I don't have any way of knowing what the future might bring or what the outcome will be, but there is a very real possibility that this awareness and the constant worry for the future will be with you from now until your last day.

But don't let those few disclaimers get in the way of stocking up on extra autism awareness in time for tomorrow's awareness day.  After all, the chance to get to know these wonderful children is well worth the the extra cost.  All of the fashionable people will be sporting extra awareness and you should too.

~~~~

Hmm, you still here reading?  Since this post is going to be up on autism awareness day, I guess there should be a serious point rather being rather flippant about the whole thing.  OK, here is the little bit of the serious that I hinted at above, but I don't think it is going to be a popular point.

There is a lot of talk in the autism community about how autism advocacy should be entirely about the people who have autism.  After all, they are the ones who get to experience the joy of autism first hand.  But the one idea that gets lost in all of the rhetoric of "nothing about us without us" and other feel good slogans such as "I shouldn't have to change" is the cost of autism to entire extended family.

For every one person with autism there are typically going to be at least three, four, or many more other people who are going to be profoundly impacted by that person's autism as well.  So, as unpopular as this idea is going to be, autism advocacy shouldn't be completely about just the people who have autism.

Don't misunderstand, this isn't some woe is me rant from yet another parent.  I am not saying that autism has ruined my life or any other such tale of misery.  I actually like my children and enjoy spending time with them; as I said above, they are truly great little girls and I wouldn't give them up for the world.  I may wish that they didn't struggle with autism but I certainly wouldn't trade them for other "normal" children.

But, at the same time, living with autism - even if you don't experience it first hand - extracts a high professional, social, personal, and health cost and these costs are not limited to the immediate family.  Everybody who is involved feels some of the impact of autism whether it be the parents who bear the brunt of the dealing with the joy of autism on a daily basis to grandparents to other family members and friends who try to help out.

Anyway, that is the serious bit of awareness - the cost of autism to people other than those who have autism.  So, if you happen to know a family whose children have autism (and given how common it is now, you probably do) try to be nice to them.  They are dealing with a lot and can use any help you can provide.

Thanks

Vaccines Exonerated From Being Involved in Autism, Again

Yet another paper has been released that shows that, yet once again, vaccine have nothing do with with autism.  This paper adds to the piles and piles of studies on this topic that are meant to reassure parents that vaccines have no relation whatsoever to autism.

Unfortunately, this paper appears to be yet another paper that purports to dismiss a link between autism and vaccines without actually addressing the core underlying issues.  Or, to be perfectly honest, I should say that it seems to be yet another paper dismissing the link because I only skimmed it and didn't analyze it in any depth.

I only read enough of the paper to realize that it didn't tackle any of the questions that I have about a potential link between vaccines and autism and repeated some rather obnoxious speculations about how an infant could "theoretically could respond to thousands of vaccines at once" before I lost patience and interest.

If you are interested, the full text of the paper is available here and I encourage you to read it and form your own opinion.

I don't think that anybody (rational) would argue that a healthy child *should* be able to easily take a single vaccine or even a few of them at a time, although I would not go anywhere near Dr. Offit's claims a child can handle the equivalent of thousands of shots at once.  I don't think most (again rational) people would argue that vaccines aren't a good thing.

Just to be perfectly clear here in case someone wants to try and misinterpret what I am saying, vaccines = good.  You should vaccinate your children although you should do so in a manner that is consistent with your child's well-being and not simply because some schedule says that it must happen on this date.  I will elaborate on that last bit in a minute.

But getting back to the core issue, one that I don't think I have ever seen tackled directly by mainstream medicine, is whether there is something different about the children who (theoretically) develop autism after vaccinations or whether it is whatever else if going on at the same time or immediately after that causes the problem.

Is it the stress of vaccination or the resulting fever on the body that exacerbates some underlying issue ala Hanna Polling, is it the constant use of acetaminophen to treat resulting fevers that depletes potentially scarce supplies of glutathione leading to other biological disruptions, is it the extra stress on an already disregulated immune system, is it a combination of all of these or something else entirely, or it just figment of parents' imaginations?

I know from my own experiences with my twin daughters that medical practitioners sometimes seem more concerned with giving vaccines on a rather arbitrary and predefined schedule rather than when it is in the child's best interest.  The twins, at one year old, had just both been through a rather nasty cold/flu, rotavirus, an ear infection, and several rounds of antibiotics within a few short weeks when they received the MMRV at a routine visit.

Before this time period they were developing slowly but within normal parameters for twins but afterwards they lost some skills and their development stalled for years.  I certainly don't think the vaccine "caused" their autism as their younger sister also went on to develop a milder form of autism but I certainly think it did add stress when they could least handle it.  It certainly wasn't a medically prudent time to be giving them a vaccine.

But here we have yet another paper suggesting that parents like me are just imagining things without actually taking the time to look at specific children to see what else might be going on that could change a routine, safe, and necessary medical procedure into something else.

I am getting rather sick and tired of papers trying to absolve something of responsibility when we can't even be sure what the thing is.  I completely understand that the existing body of literature shows that there isn't a simple causative relationship between vaccines and autism.  But it is a large jump from that statement to the presumption that vaccines play no role whatsoever in autism.

Before we can completely clear vaccines of any involvement in autism, we have to first understand what autism is and what can cause it.  Only then will we be able to analyze whether there is some involvement or not.

So how about we spend more time doing basic research into the biology of autism and investigating the scores of biological abnormalities seen in people with autism and less time beating a dead horse.  The only way to convince people who have questions is to actually answer those questions, not to keep repeating the same thing over and over again.

Sorry, I will get off the soapbox now.

Autism Rising : By the Numbers

As I talked about last time, a new paper was just released that found the the prevalence of autism in school aged children was about 2%.  This figure is (yet another) sharp upwards revision from last year's surprising 1.1%.  It seems like every year or so we are treated to yet another vastly higher estimate of autism prevalence and every year we are treated to the same reasons for the increase.

Well, the good news is that the increase shown in this years data is being blamed on something slightly different.  The bad news is that this year's explanation doesn't hold up on close examination.

The official line this years seems to be that the roughly 70% jump in the autism rate is mainly attributable to children with a milder form of autism being missed at a younger age and being "discovered" later on in life.  Which is basically a variation on the "better diagnosing" line that has been used to explain away part of the increases for more years than I can count.

The conventional wisdom before this paper is that most - but not all - children with autism will be diagnosed by the time they are eight years old and that children with a diagnosis at that age are more likely than not to keep the diagnosis.  There are a couple of reasons for this belief, not the least of which is by this age most children have been in school for two or three years and that problems that their autism cause will be apparent to their teachers and when they are compared to their typical peers.  It also doesn't hurt that that it has been demonstrated empirically by several studies over the years.

This paper is seeking to amend the conventional wisdom to allow for a large number of "milder" case to be diagnosed at a later age and for this group to account for a substantial portion of the autism population.

So, the question is then whether the data underlying this paper supports that idea or not.  To answer that question I pulled the underlying data from the 2011/2012 National Survey of Children's Health and did some analysis of the data.

For the following analysis I am using the children in the NSCH data set that have a current diagnosis of autism.  I will also be using the 1.1% (1 in 88) prevalence estimate that was published by the CDC last year and will also be making some brief usage of the data from the NSCH 2003 and 2007 survey years.  These different data sets aren't completely compatible but they are good enough for my purposes.

First up, lets consider the idea that a substantial number of children in the 2012 population came a diagnosis later in life.  If the explanation offered by the paper is true and that a large part of the 0.9% increase is due to later diagnosis then that should be apparent by looking at the age when the children in the survey were diagnosed.

The good news is that the 2012 survey has this data so we can directly look at the number of children diagnosed by age.  I am going to used the following age ranges because they (should) be representative of the different times when a child might be diagnosed.

• Ages 0 to 4 are children who are not yet in the school system and represent the group that is picked up by early screening and early intervention efforts.
• Ages 5 to 8 represent the children who are just entered the school system.  Conventional wisdom tells us that most children with autism will be detected by the end of this period.
• Ages 9 to 12 are children who have been in school for a while but have not yet experienced the higher social demands that comes with adolescence
• Ages 13 to 17 are the children who are likely to experiencing the increased social demands of adolescence and where you would expect the children with the mildest forms of autism - forms that are primarily social in nature - to be detected.

Below is a chart that shows the percentage of the autism population that was diagnosed in each age range.

As you can see the majority of children, about 82%, were diagnosed by the time they were eight years old, as is expected.  A simple back of the envelope calculation suggests that 1.6 of the 2% prevalence was diagnosed by age 8 which leaves 0.4% being diagnosed later in life, although that depends on what you mean by later in life.  If later in life means older than 8 that means the 18% of the population but if later in life means the teen-aged years (13 and up) then that means only 4% of the population.

Regardless, the idea that the majority of the 0.9 increase in autism prevalence is being cause by older children being missing simply doesn't hold water even under a generous reading of "older children".

But that is across the entire data set.  Lets do a similar analysis but break down the prevalence not only by the age the child was then they were diagnosed but also by the age that they were when they were included in the survey.  The following chart does exactly that and charts the prevalence per 10,000 using the same age brackets as last time.

Now this chart shows a couple of very interesting things.

Lets start with the most obvious thing - the age of diagnosis in the oldest children shows a different profile than the data set as a whole.  In this group, the number of children diagnosed before the age of 8 roughly corresponds to last year's 1.1% prevalence and the additional increase of prevalence is coming from children who were diagnosed after the age of 8.  Just as a point of reference, the children in this group are older than the children that the CDC's 1.1% estimate was based on.

So in the oldest children, the paper's idea that the increase in prevalence comes from older children being diagnosed does hold up.  The numbers work out pretty well too, you could attribute about 0.7 of the increase in prevalence to older children being diagnosed.

But if you look at the younger age groups you see the bad news.  Both of the other groups of school aged children have a higher prevalence than the oldest age group and both groups are made up almost entirely of children diagnosed by the age of 8.  Or, in other words, the paper's idea falls completely apart and the higher prevalence in the younger children is not being caused by missed diagnosis of milder children when they get older.

Then there is the other little disturbing trend that is visible in the data - the number diagnosed in each age range is climbing as the children get younger.  Look at how the blue section (children diagnosed between 0 and 4) is larger in the 9-12 group than it is in the 13-17 and the 5-8 group is larger than the 9-12.  The same pattern appears in the red section.

Keep in mind when you look at the chart that some of the sections include the current age are going to be incomplete.  So the green section in the 9-12 year olds is going to grow as this age group gets older as will the red section in the 5-8 year olds, as will the blue bar in the 0-4 year olds.

There seem to be two trends in this data - there are children being diagnosed later in life (who are presumably milder) AND the actual prevalence of autism is growing per birth year.

To illustrate this, lets look at the data from the 2003, 2007, and 2012 NSCH survey years.  The earlier years don't have the age of diagnosis available and the 2003 survey didn't ask the exact same questions but it is close enough.

The following is the approximate prevalence per age from all three surveys, the data from the earlier surveys has been shifted to the age that the child would have been in 2012 and I removed the 0-4 age group because, as you can see above, the detection rates are quite low in this group.

The same two trends are visible here as well - the prevalence for the specific age grows each survey year but the prevalence in children born later is higher still.

I think this data makes the overall trend quite clear - the rate of autism is growing by each birth year.

Autism Rising : Here We Go Again

Ah here we are, another year, another autism awareness right around the corner, and yet another new estimate of autism prevalence from the Centers for Disease Control.  But don't worry, the non-real "its all better awareness" increase is only about a 75% increase from the last "its all better awareness" increase.

The new number, which seems to be based on yet to be released survey data from National Survey of Children's Health (NSCH) for 2011/2012, is that 1 in 50 school aged children (aged 6 to 17) have a form of autism.

For comparison -

• The last estimate of autism prevalence from the NSCH in 2009 was 1 in 100.
• The current estimate of autism prevalence of children born in 2000 is 1 in 88

So the current estimate from the NSCH probably contains estimates for children born after 2000, possibly as late as 2005-2006, but the rates in these children are going to be diluted by the (again probably) much lower rates in older children.  If I had to guess, I would guess that this most recent data shows an even higher rate than 1 in 50 in the youngest children.

I have to guess because no official study or data has been released yet.  As is quickly becoming the norm, we first find out about major announcements like this from the mainstream media before we have a chance to look at what the actual data says.

It will be interesting to see what the data actually shows when it finally gets released.

UPDATED : The report from the CDC is available here.

The Autism Community's Response to Planned Violence

I took down my prior entry about the post at Wrong Planet because it appears that the offending post was removed from the site and I don't want that person's words to live on at my site.  But the post, and the way it was mishandled by Wrong Planet, reminded me of the much more worse incident in Newtown and how the autism community responded to that.

I didn't write anything about the tragic incident in Newtown because there wasn't (and still isn't) much known about why Adam Lanza did what he did or whether his mental problems involved autism or not.  I also didn't write about it because the incident hit a little too close to home.  All three of my children are in a single elementary school and their autism would make all three sitting ducks if someone like Lanza showed up at their school.

So I did what any sane parent would do, I stuck my head in the ground and tried to ignore that the incident happened.  I saw the initial tentative link to autism, I saw the response from the ignorant public, and I was (for once) extremely glad that my children are disabled enough by their autism that the incident would pass by unnoticed for them.

But what I saw of the autism community's response to the incident before I started ignoring it bothered me almost as much as the initial incident.  Here you have a community who fights to get their disabled members accepted by society, who fights to break down the stigma associated with autism, and who tries to increase the general awareness of autism is and isn't and the almost universal response from this community was to throw people with other mental disorders under the bus.

The community could have taken this tragedy as an opportunity to talk about the desperate need for more services and supports for all adults with a disability.  The community could have talked about how there is a growing problem of young disabled adults who are utterly dependent on their parents for support and what impact the lack of supports has for these families.  But instead of doing that, the autism community instead tried to distance itself as much as possible from the incident and draw a clear distinction between people with autism and people with other mental conditions.

There were statements about how there is no scientific or systematic link between planned violence and autism which completely ignores the inconvenient fact that there isn't really a large association between most mental disorders and planned violence.  Yes, people who do these horrific things tend to have mental problems (or at least we like to pretend that is the case afterwards) but most (i.e. 99.9%) of people with mental problems don't commit acts like this.

But instead of working to get rid of the stigma associated with mental disorders in general, the autism community instead tried to separate autism from those other conditions.

These statements also ignore the inconvenient fact that the first wave of the autism tsunami is just now reaching adulthood and we really don't know what they are going to be like.  Regardless of why the number of people with autism has grown exponentially over the past twenty years, the fact remains that there are substantially more people with autism today than in the past.  So the people in the past who were diagnosed with autism may be quite different than those who are today and the research into what they are like might not be quite accurate.

Then there was a lot of pontificating about how autism is a developmental disorder and isn't a mental illness and while technically true, the point is rather moot.  I don't think it really matters whether a person never developed a certain mental facility or whether they had it and lost it to a disorder later in life, the important point is that the person doesn't have facility or ability you would expect them to.  So the goal here again was to separate people with autism from people with other mental conditions.

But perhaps the most disturbing statements were from adults who claimed to have autism themselves.  Maybe I am a victim of selective reading but I ran across numerous comments from high functioning adults with autism on all the major media outlets and many of them showed a complete lack of respect for people with mental disorders.

As one kind comment from an aspie on CNN said (I am paraphrasing here), autism is just a difference not some mental illness.  Those people with mental problems are sick and need drugs to help keep them from hurting other people.

The hypocrisy of advocating for acceptance for your own differences and problem while at the same time condemning other people for theirs blows my mind.

Or, in short, I was extremely disappointed that the autism community's almost universal response was to try and draw a line between autism and those other conditions.  The autism community talks a lot about acceptance of differences but, when it was presented a chance to live up to its principals, the community came up short.  Instead of standing up for people with all sorts of differences and working to build acceptance in general, the response instead was a divisive "its not us, its them; we're not like them".

Regardless, the overall point being made by the community is a valid one.  While there might be an association between autism and spontaneous, unintentional aggression, whether it be towards others or the person themselves, there is no known relationship between autism and sitting down and planning to commit a violent act.

But then there was the threat of planned violence posted on Wrong Planet and it made me wonder.  Maybe there isn't a direct link between autism and planned violence but I have to wonder whether there might be a link between social isolation and the willingness to commit horrific acts.

If that is true then that suggests that society as a whole needs to do a far better job at helping people with all sorts of disabilities feel connected and suggests that ideologies that do nothing but divide people rather than bring them together are far more harmful than I thought.

It will be, uhm, interesting (for lack of a better word) when and if we ever get a clearer picture of exactly what happened in Newtown and why Adam Lanza decided to do what he did.  I suspect that we have not heard the last of autism's involvement in the incident and, if little bits and pieces of what I have read are true, well, lets just say that won't be pretty.

At the very least, this incident should force this country to have a serious discussion on how people with mental health issues are treated and, just as importantly, on better gun control.  There is absolutely no reason why someone like Lanza should have had access to the arsenal that he took with him and, without a doubt, the death toll would have been much lower if he weren't so heavily armed.

Well, this has been a little too much reality for me, I think I need to go stick my head in the ground again and pretend that none of this ever happened.  I just hope that if autism gets dragged back into the mess that the community responds better than it did the first time.