ASAN Puts Ideology Ahead of Children's Safety

The "Autistic Self Advocacy Network", aka ASAN, is putting its ideological goals ahead of the safety of people with autism by opposing the CDC's efforts to address the issue of wandering in autism.  You wouldn't think that an organization whose stated purpose is to advocate for the needs of people with autism would be opposed to addressing a safety issue, but here we are.

Here's the deal.  The CDC recently proposed adding a medical diagnostic code for wandering in children and adults with autism, developmental disabilities, and other conditions such as Alzheimer’s.  The CDC wants to use the for the following purposes -

Diagnostic codes for wandering associated with ASDs and wandering associated with other developmental disabilities would promote (1) better data collection for and understanding of this behavior (2) prompt important safety discussions between healthcare providers, caregivers, and the person with the disability to the full extent possible. Better data should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand the wandering and develop proper emergency protocols and response while supporting self-determination principles.

As many parents whose children have autism can tell you, wandering is one of the many safety concerns that they have to worry about.  Some children with autism can and will wander away from home or other safe environments without any regard to the consequences.  They will get lost in the woods, drown in pools, walk straight into traffic, or do other things that will put their lives at risk.  They will do these things without any understanding that these things are dangerous because they are not aware of their environment.

While there is not yet any hard data on how often wandering happens, there are plenty of stories of children with autism who wander away from home and die.  I believe there is an urgent need to get a handle on this problem and to get the programs in place to help prevent needless deaths.

You would thing that ASAN would be all for preventing needless deaths but you would be wrong.  ASAN put out an "Action Alert" two days ago telling the world that they are against addressing the problem of wandering.  However, rather than directly address the issues of wandering, ASAN is trying to re-frame the debate into nonsense terms.

Instead of children wandering away because they don't realize the dangers, ASAN is claiming that children use wandering as a communication tool to avoid "abusive or sensorily overwhelming environments" -

By labeling hundreds of thousands of school children with disabilities with a diagnosis of "wandering", CDC will encourage districts to plan for the use of restraint for these students in Individualized Education Plans (IEPs) and school safety planning. Furthermore, by claiming that "wandering" is an unavoidable medical diagnosis instead of a behavioral response to specific circumstances, children with little to no communication needs may lose one of their last ways of making family members and educators aware of abusive or sensorily overwhelming environments: trying to leave a dangerous situation. Far from making children with disabilities safer, this proposal will enable abuse "in the name of treatment" and make it harder for non-speaking students to communicate problems to their families. 

Yes, I can see that identifying a very serious problem like wandering and putting a plan into place to keep children from harm will stop them from communicating.  How exactly does that work?

ASAN also claims that this label will "enable abuse and restrict the civil rights" of people with disabilities.  Or that the label might be used to enable "insurance coverage for tracking devices".  I mean being able to track children who have wandered away from home and find them before something happens would be terrible.

Here's a hint ASAN, if you have an abusive parent, caretaker, or educator, they aren't going to be stopped by the lack of a label.  But a label has the potential to give us real data about how serious the wandering issue is and help prevent needless deaths.

If you ever needed a good example of why ASAN does not speak for the needs of children with autism, this is it.  Go read the entirety of why ASAN doesn't seem to care about children's safety.  Or better yet, support organizations like AWAARE that are working to prevent wandering incidents and deaths.

BMJ Opens the Door to Conspiracy Theories

I don't like conspiracy theories.  I don't like wasting my time thinking that a group of people are secretly conspiring to pull something over on the rest of us.  It has been my experience that, most of the time, the conspiracy is nothing more than a figment of someone's imagination.

But, I do know that people are not always completely forthcoming with the truth.  I know that backroom deals happen all of the time for the benefit of those involved and the details of these deals are rarely made public.

I am also acutely aware that money corrupts and that if one group gives a good amount of money to a second group that first group has significant power over the second.  Money buys access, favors, and above all, leverage over the recipient.

When it comes to published science, money is very problematic.  I don't think it is any secret that when research is sponsored by a company, it tends to be more favorable to that company than independent research.  And then there are the (hopefully rare) cases when a company goes completely over the line and then we get ghost-written studies and entire journals that are fake.

But this is the stuff that conspiracy theories are made of.  What happens is that you have a company that appears to have bought some research to improve its bottom line.  The parties involved try and hide the details of the transaction but eventually they get caught and the affair is made public.

Hopefully at that point the parties are at least honest and admit to the affair (although I know that doesn't always happen) but the damage is done - our trust in the parties involved has been eroded.  The conspiracy has been started and we start having to constantly ask ourselves what else "they" aren't telling us.  And the next time that something gets published that involves these parties we have to ask ourselves if they are being completely honest with us.

Now, there are a few ways to deal with this problem.  The best way is for researchers and scientific publications to not accept any money from companies who could have an interest in the results.  But we all know that isn't going to happen.

A second way is to always be completely forthright about any financial arrangements between the researchers and publication and companies.  This doesn't get rid of the conflict but it at least gets it out into the open and defuses the conspiracy aspect.  But for this process the work, the disclosure has to be there from the start.  It doesn't work if you only admit to it after the fact.

Having said all of that, I think that the major journals are well aware of this problem and go to great lengths to even avoid the appearance of impropriety.  So imagine my shock when the BMJ was called out recently for failing to disclose a financial relationship with Merck in their recent pieces calling the ex-doctor Wakefield a fraud.

The problem is this.  A group of, ahem, interested parties combed through the records of the BMJ and found that they had a substantial financial relationship with Merck.  This group publicly called the BMJ on the lack of disclosure in the Wakefield articles, the journal responded with a resounding "whoops" -

Although Vera's claims may seem far fetched on this occasion, she is right that we should have declared the BMJ Group's income from Merck as a competing interest to the editorial (and the two editor's choice articles) that accompanied Brian Deer's series on the Secrets of the MMR scare.[2] [3] [4] We should also, as you say, have declared the group's income from GSK as a competing interest in relation to these articles. We will publish clarifications.

We didn't declare these competing interests because it didn't occur to us to do so. We saw this series not as pro-MMR vaccine or pro- vaccination in general, but as against fraud and corruption in medical research.

Go read the entire response from the BMJ, it is quite interesting.  The fact  that an article about "corruption in medical research" failed to disclose a significant potential conflict of interest is ironic, to say the least.

There are at least two ways that you could look at this situation.  The first is that the journal made an honest mistake and came clean when called on it.  And if this were another situation, that would be exactly the way that I would look at this.

But in the case, the journal was already on shaky ground.  Remember, this series of articles was commissioned and paid for by the journal.  The journal went out and hired a journalist - not a scientist or researcher - and paid him to write these articles.  And it wasn't just any journalist either - they hired Brian Deer who has made it his mission in life to hound Wakefield.  More importantly, these articles weren't the typical peer-reviewed articles that a journal would be expected to publish.  These articles were written with the explicit purpose of attacking a researcher and calling them a fraud.

Given all of this, I would have expected that the journal would have gone well out of their way to avoid even the appearance of impropriety.  After all, if you are going to call out someone else's misbehavior, you had best not be guilty of the same.

But they didn't.

So then we are left with the facts that the journal commissioned a paid attack on a researcher and that the journal had undisclosed financial ties to companies that have a vested interest in seeing this line of inquiry shut down.  And when you add in the idea that children are the victims of this potential collusion, what you are left with is a very powerful narrative.

I don't know whether the corporate sponsorship that the BMJ received in any way influenced the decision to commission and publish these articles on Wakefield.  I want to think that it didn't,  but the sad truth is that there is no way to know for certain if it did or didn't.  The potential for bias is there and the journal dropped the ball and made it look like they were trying to pull a fast one.

A new conspiracy is born.

Recovery from Autism

There is a rumor that I have been hearing about autism almost since the day it entered our lives five years ago.  I have heard this rumor being whispered in the background whenever rational people gather to discuss autism.   I have seen hints of it in every new bit of research and every new strategy for helping children with autism.  The rumor is this -

Recovery from autism is possible.

The other day I actually came face to face with the rumor.  For the first time, I met a child who had been "recovered" from autism.  The exact details of the case are irrelevant but, suffice it to say, there was enough overlap in the path that this child travelled and our own that I am convinced of two things.

First, this child really did have a diagnosis of autism and not high functioning autism or Aspergers.  And second, even after several hours of watching this child in a social setting and knowing that they had a diagnosis, I couldn't see even the smallest hint of their autism.

While I don't know what exactly "recovered" the child - whether it was biomedical treatments, dietary restrictions, behavioral therapy, or something else completely different - I don't think it really matters.

What matters is that this child's parents took the initiative and provided the extra help that the child needed.  What matters is that the child's hard work payed off.  I mean, lets be honest, if autism is hard on the parents, it is doubly hard on the child.  As parents we can only provide extra help, it is up to the child to do the really hard work of actually learning to overcome autism.

In this case, with this particular child, the combination of treatments and the child's hard work payed off.  The child overcame the disabling aspects of their autism.  So I beginning to think the rumor might not just be a rumor after all.

Recovery from autism is possible.

Sadly enough, in some parts of the autism world saying those words is like throwing down the gauntlet.  You even suggest that your child needs to be "recovered" and you will be told, in no uncertain terms, that there is no need of recovery because there is nothing wrong with them.  You will be told that that the problem isn't autism but rather how society responds to autism.

If you are particularly lucky, you will have the pleasure of having someone tell you that you are the problem.  You might be told that the problem is that you don't accept and love your child for who they are.  I wish I were making this last bit up, but unfortunately I'm not.  I have been on the receiving end of this nonsense on several occasions and I have seen other parents attacked in this fashion many times.

So, for the record, to everybody who thinks that trying to help your child recover from a debilitating condition like autism is tantamount to rejecting your child (this means you Amy Caraballo), I have one thing to say to you -

Go to hell and take your stupidity with you.

This idea that recovery from autism is bad is predicated on the idea that autism is a fundamental part of a person and that to "recover" a person from autism you would have to make them something other than they are.  So by wanting to "change" a fundamental part of who a person is, you are saying that you don't accept the person for who they are.  If you don't accept your child then you consider them an inconvenience and you don't love them.

If you couldn't have guessed by now, I don't agree at all with that idea.  Don't get me wrong, I am completely for having society be more accepting of people with autism.  Society isn't very accepting of people who are different and there is a lot of work to be done to make it so that people with autism aren't automatically ostracized.

But I don't think that blaming society for an individual's difficulties is a particularly useful approach.  Autism can be a debilitating condition and it is one that needs to be addressed at the individual level.  Society doesn't stop a person from being able to communicate nor does it create the non-functional rituals and obsessions that are the hallmark's of autism. While it may make it harder for a person with autism to socialize, it doesn't create the underlying social awkwardness in the first place.

These issues are caused by autism and are going to exist whether or not anyone "accepts" them or not.  So to help a person with autism, you have to attempt to find an individual solution to that person's specific difficulties.  If you do that then you too may be able to help your loved one recover from their autism.

We have not reached that point yet with our children but I hope that someday we will.