Thursday, April 28, 2011

Community, What's a Community?

Surgeon Generals Warning : Reading this rant might be harmful to your health.  If you are easily upset, really picky about negativity, or suffer from high blood pressure you may not want to read this.

Let me say up front that this post is me being just ever so-slightly petty.  If you don't want to read what I write when I am at my, ahem, "best", I suggest that you skip right over the body of the post and just read the last little bit, my single serious point is there.  Or better yet, don't read any of it and we can pretend that this post never happened.

Still here and ready for a good rant?

OK, lets talk about ideas and being right or wrong.

I am willing to keep an open mind on just about any subject and I always try to stay open to the idea that I could be wrong.  I try very hard to be consistent in what I say although, to be honest, you will sometimes hear logic sobbing softly in the corner as I tie it up in knots trying to remain consistent with myself.

I also tend to advocate strongly for what I think is the right idea.  Sometime I do a good job of it and other times, well, lets just say the result aren't pretty.

Nobody's perfect, right?

Having said that, nothing gets under my skin like hypocrisy.  I don't particularly care what you think is true as long as you stick to your beliefs.  Nor do I really care if you decide to change what you believe in.  I am not one of those people who think that you can never change your mind.

But what really drives me nuts is when someone pays lip service to an idea but then their actions show that they don't truly believe it.  It also drives me nuts when someone gets up on their high horse only to resort to mudslinging.

To use a very bad example, it is like when someone claims to be a good christian and then turns around and is the most intolerant person.  Its like saying I treat everyone with love and respect, except him, he's a homosexual and that's a sin.

Wow, how many bad stereotypes did I use just then?  If the PC police are out in force today I might be in trouble, but hopefully you got the point.  (And no slight to christians intended)

Your statements and actions need to agree with each other.

Anyway, all of this is a (slightly convoluted) prelude to put what follows.  For the context of what I am about to talk about (and my own less than ideal performance in this matter), see the comments here and here.  It might take you a while to read through the first set of comments, so I will wait.

Done reading yet?

OK, I am posting my final response to Kim's comment here because I think it is important to understand just why the autism community is divided and how nasty the divide can be.  That and Kim promised to delete my comment there (yeah, I got banned, again).

The community is divided because we all believe different things about autism.  I personally believe that is a profound medical disorder that needs to be cured.  Others believe that it is a natural part of who a person is.  And then there are the sixty other view points as well.

But we all want the same thing which is a better life for our loved ones who have autism.  And sometimes we get so invested in our own positions that we forget this.

Since I am currently quite invested in my position (and decently annoyed), I am going to break one of my own rules and make my some personal comments against someone who I feel is hypocritical.  I really don't like to do this, but every once and while you just have to rant.

(Wait, doesn't that make me a hypocrite too?  Note to self, write angry rant about angry rant, decry self as double hypocrite.)

So here you go, me at my best.  Kwombles, this is for you.


Aw shucks.

The problem, Kim, is the difference between actions and words.  You write that you believe something but then your follow up comments show that you don't.

You say "I'm all inclusive" but then follow it with something like "I can't believe those dumbasses think that GI problems could be related to autism", that you aren't interested in "speculation".  You say you prefer "I don't knows" and then immediately label everything that falls into the grey area where knowledge is lacking as "woo".

You say you welcome opinions and then immediately launch personal attacks on people who have different opinions.  I think that the PBS did a good job with their Autism Now series in spite of the fact that no person with autism was directly interviewed, you say that means I lack empathy for people with autism.

You say that you keep an open mind and then reject everything that isn't "proven" via science.  Science isn't black or white and it isn't about absolutes.  That goes double for soft sciences like medicine and quadruple for even softer sciences like psychology.  Science is about seeking knowledge, not about wielding isolated facts like a club to silence those you disagree with.  It certainly isn't about a question being "asked and answered".

I think my favorite thing was how you like to promote this image of having an open discussion about ideas and then immediately turn around and label everyone who disagrees with you a dumbass.


If you made it this far, let me ask you two questions.

Does the part about hypocrisy make sense now? It seemed to be a little bit of a stretch when I was writing this so I wasn't sure if it made sense.

And more importantly, do you think this post would come across a little less harsh if I posted some pictures of flowers in the middle of it?

No?  Ok, I didn't think that would come across too well for me.

Ahem, now that I am done being an ass and feel better worse, lets get to the serious point.

Serious voice

The above sorts of exchanges are all too common in the autism "community".  Everyone is guilty of doing it to a greater or lesser degree.  I know that even though I try and avoid it that I sometimes get roped into it as I did above.

It is very hard to read something that is the complete opposite of what you believe and to not comment angrily.  When it is a loved one or yourself that you are arguing for that gets even harder and accusations start flying at the drop of the hat.

I think the thing that set this all off was the use of one word - "offended".  Kim was "offended" that the PBS show didn't include interviews of people with autism.  I thought the show was excellent as it was and assumed that Kim was attacking it simply because she didn't like what the show had to say about autism (p.s. for some of us, its called the reality of autism).

But, after listening to some of her reasons, I have to conceed that having an interview with a moderate functioning person with autism would have been a good addition.  However, that lack certainly didn't make the show "offensive".

Wait, who am I kidding.  I still think that she called it "offensive" because she didn't like the side of autism that it showed.

The show was a ground breaking look at what life can be like when your children has autism.  It reflected a lot of what our family life is like - the challenges, the worries, the "other" medical issues, the fighting for appropriate supports, and the stress for the future.

Autism isn't just about the people who have autism - it changes the lives of EVERYONE in the in the family - and these other people have a right to have their own opinion of it without being told that it is somehow wrong or "offensive".  We should be able to talk about how autism can truly fucking suck some of the time without people jumping in and telling us we shouldn't say bad things about autism.

Maybe if the general public had a better picture of what autism can do to people who have autism as well as their families we would be able to get some better help.  Instead we have the autism community tearing itself apart with some of us saying "wow, this sucks" while the other side saying "shhh, you can't say anything negative about autism because that would give the wrong impression".  Its no wonder we can't get along.

P.C. Editors Note : Saying that autism sucks is in no way, shape, or form implying that people who have autism are defective, broken, non-human, or any of the other typical BS that gets assumed.  A persons is a person, not a disability.  Nor is this a denial that people with autism have a right to speak on their behalf, either.  Nor is it saying that I don't love or accept my children for who they are.

Oops, a little bit of the rant managed to find its way into the serious section.

So if you go back to the "offensive" word you might see were the problem came in.  I didn't realize it myself until I stopped to think about my own reaction.  Show = Offensive, My Life =~ Show, My Life =~ Offensive.

I am (mostly) sure that she didnt mean to imply that but it is an example of how easy it is to take offense at something without realizing why.  I still think she is way off base with the idea that the PBS show was "offensive" (did I mention I am stubborn too?) but perhaps I should have approached the subject differently.

You live, you learn, and you move on.

So, consider this a plea for civility from someone who is equally guilty of not always being civil.

Except you Qwibbler, you can bugger off.

Wednesday, April 27, 2011

Speaking for Autism

One of the criticisms that has been leveled at the recent PBS Autism Now program is that it did not include an interview with a person who has autism.  While I somewhat understand and partially agree with the complaint, I don't think that the absence hurt the show that much.

To its credit, the show did have 4 children and one young adult with autism on the show.  The children were of different severities and not the just the extremely high functioning children that are typical on these types of shows.  The young adult also appeared to be moderate functioning and wasn't extremely disabled or enabled by his autism.

The children and young adult on the show did get a decent amount of camera time and the show did go to great lengths to demonstrate that people with autism function at all different levels.  They showed how some of the children can talk, others can kinda talk, and still others have almost no verbal communication and everyone had social issues.

Of course, the third part of the autism - the so-called repetitive and restricted interests - was barely touched.  Which is a shame because it is this part of autism that causes the majority of the problems.  Or at least it is in many "typical" children with autism.

Regardless, I think the point of the program was to show the middle of the spectrum.  There have been (many) programs that highlight the extremely high functioning but almost none that have looked at what the middle of the spectrum looks like.  Although for that matter, I don't think there have been any that give a serious look at what the extremely low end of the spectrum looks like either.

The show also appeared to focus of the majority of the autism population.  It seems to be commonly forgotten that the vast majority of all diagnosed autism cases are in children under the age of 21.

So when you put these ideas together the question is then who the show should have interviewed.

You would eliminate the extremely high functioning children and adults as they make up less than 10% of the autism population (and they already do more than 90% of the talking for people on the spectrum).  An added problem is that they are not very representative of the challenges faced by those who are in the middle (or lower) end of the spectrum.

You would eliminate older moderate adults because they weren't the focus (sorry, Jonathan) and because they are another minority in the overall population.

You would have to eliminate almost every lower functioning person - young and old - because they would likely not have enough communication skills or social skills to make the interview possible.  I might be wrong about the older people in this group but again, older people weren't the focus.

All of this is to say that the show would have likely wanted to interview young adults or children with either moderate autism or moderate pdd-nos.  They are the middle of the spectrum, the middle of the autism population, and what most people could be expected to be exposed to.  They would also have issues similar to those faced by many of the families whose children are on the spectrum.

But that lead me to a question that I don't know the answer to - how many of the children and young adults in this group have the functional communication skills and social skills that would be required for the interview?  Remember, when you are talking about classic autism or pdd-now, then you are talking about a condition that disrupts the functional use of language in addition to the social use of language.

That point bears repeating because I think it gets overlooked frequently.  All children with classical autism start out with a disruption in functional communication.  I would guess that most children with pdd-nos also have a disruption in functional communication.  If they didn't, they would more likely have a label of Asperger's rather than pdd-nos.

It is a assumption (right or wrong) that most children on the spectrum will be able to learn these missing skills as they get older.  But how old do these children have to be before they could be expected to have the functional use of language and the social skills that would be required for the interview?

I have never been able to find any solid numbers in this area.  Although, to be honest, since two of my daughters are only partially verbal I haven't really wanted to know what the numbers look like.

A page on the CDC's site suggests that 40% of children with all forms of autism do not talk at all.  The recent data on wandering in autism suggests that at least 30% of children with autism can't communicate well enough to answer basic questions like "what is your name".

So if an estimated 35% (estimated) of the "bottom" of the spectrum can't really speak, how high on the spectrum do you have to go to find a child who can not only talk but also has the social skills required for the interview?  How high do you have to go before you would be able to find someone who is able to express abstract ideas about how autism effects their life?

Of course, as the saying goes, if you have seen one person with autism then you have seen one person with autism.  There is a huge variety in the impairments seen in people with autism.  It is entirely possible that there are plenty of of young adults in the middle of the spectrum that have both the communication skills and social skills for an interview like this.

Although it has been my experience that for every area with less impairment there are an equal number of areas with a higher degree of impairment.  So there might well be many children with the communication and social skills with much more severe behaviors that would prevent the interview.

I don't have any of the answers to these questions but I thought it was interesting to consider.  So let me ask you.  Do you think it would be easy to find a child or young adult with moderate autism who would be able to speak for the middle of the spectrum?

Tuesday, April 26, 2011

Melatonin for Sleep Issues in Autism

A recent meta-review has found that melatonin is a safe and effective treatment for sleep disturbances in autism.  While this finding should not come as a surprise to anyone, it is good that researchers continue to publish on subjects that can improve the quality of life for children with autism and their families.

The key findings here are similar to those in other studies.  Melatonin can help children with autism fall asleep faster and stay asleep longer.  It has minimal side effects and is well tolerated by most children.

However, while melatonin can help with some children, it is not going to work for all children.  And melatonin does not seem to help if the problem is that your child wakes up during the night.

Or in simple terms, it can help your child fall asleep but it isn't a cure-all for the sleeping problems associated with autism.

The abstract really gives all of the relevant details, so here it is.

Melatonin in autism spectrum disorders: a systematic review and meta-analysis

Aim  The aim of this study was to investigate melatonin-related findings in autism spectrum disorders (ASD), including autistic disorder, Asperger syndrome, Rett syndrome, and pervasive developmental disorders, not otherwise specified.

Method  Comprehensive searches were conducted in the PubMed, Google Scholar, CINAHL, EMBASE, Scopus, and ERIC databases from their inception to October 2010. Two reviewers independently assessed 35 studies that met the inclusion criteria. Of these, meta-analysis was performed on five randomized double-blind, placebo-controlled studies, and the quality of these trials was assessed using the Downs and Black checklist.

Results  Nine studies measured melatonin or melatonin metabolites in ASD and all reported at least one abnormality, including an abnormal melatonin circadian rhythm in four studies, below average physiological levels of melatonin and/or melatonin derivates in seven studies, and a positive correlation between these levels and autistic behaviors in four studies. Five studies reported gene abnormalities that could contribute to decreased melatonin production or adversely affect melatonin receptor function in a small percentage of children with ASD. Six studies reported improved daytime behavior with melatonin use. Eighteen studies on melatonin treatment in ASD were identified; these studies reported improvements in sleep duration, sleep onset latency, and night-time awakenings. Five of these studies were randomized double-blind, placebo-controlled crossover studies; two of the studies contained blended samples of children with ASD and other developmental disorders, but only data for children with ASD were used in the meta-analysis. The meta-analysis found significant improvements with large effect sizes in sleep duration (73min compared with baseline, Hedge’s g 1.97 [95% confidence interval {CI} CI 1.10–2.84], Glass’s ? 1.54 [95% CI 0.64–2.44]; 44min compared with placebo, Hedge’s g 1.07 [95% CI 0.49–1.65], Glass’s ? 0.93 [95% CI 0.33–1.53]) and sleep onset latency (66min compared with baseline, Hedge’s g-2.42 [95% CI -1.67 to -3.17], Glass’s ?-2.18 [95% CI -1.58 to -2.76]; 39min compared with placebo, Hedge’s g-2.46 [95% CI -1.96 to -2.98], Glass’s ?-1.28 [95% CI -0.67 to -1.89]) but not in night-time awakenings. The effect size varied significantly across studies but funnel plots did not indicate publication bias. The reported side effects of melatonin were minimal to none. Some studies were affected by limitations, including small sample sizes and variability in the protocols that measured changes in sleep parameters.

Interpretation  Melatonin administration in ASD is associated with improved sleep parameters, better daytime behavior, and minimal side effects. Additional studies of melatonin would be helpful to confirm and expand on these findings.


ROSSIGNOL, D. A. and FRYE, R. E. (2011), Melatonin in autism spectrum disorders: a systematic review and meta-analysis. Developmental Medicine & Child Neurology, 53: no.
doi: 10.1111/j.1469-8749.2011.03980.x

Sunday, April 24, 2011

PBS Autism Now : Excellent Series

I finally finished watching all six parts of the PBS Autism Now Series and I have to say that the series was well done.  No show like this is going to be perfect but I think that the show presented a balanced look at autism and what it means for families.

There are few major themes from the series that I think are important to remember:

  • Families whose children have autism have many of their concerns about their children routinely dismissed by mainstream medicine and are left to find their way on their own.

  • Autism disrupts and changes the life of everyone it touches, not just the people who have autism.  There are many, many families who restructure their entire lives to accommodate the needs of their children who have autism.

  • While increased awareness, diagnostic substitution, and changing criteria undoubtedly play a role in the ever growing number of people with autism these factors alone cannot explain the increase.  The number of people with autism is most likely increasing.

  • There is not just one "autism" but rather many "autisms".  Similarly, there is not going to be one "cause" of autism but rather many "causes" and these "causes" are going to come in the form of gene/environmental interactions.

  • Finding appropriate services for your children is not easy.  There are some areas with good services while most other areas have passable services, at best.

  • The picture for adults living with even moderate autism isn't pretty.  The majority of adults with autism are going to require major supports and are unlikely to be able to live independently.

The one area that I would have liked to see included that wasn't was the disruptive behaviors that go along with autism - aka the dark side of autism.  There was very little mention of the tantrums, aggression, and self-injurious behaviors that so often appear in people with autism.  But then again, this show was aimed at helping people understand autism not making them afraid of it, so I guess this exclusion is understandable.

Regardless, if you haven't watched the series I suggest that you do, it is well worth the time. The video of all six parts, along with the transcripts, are available online.

Part 1: Nick's Story
Part 2: Numbers on the Rise
Part 3: What Are the Causes?
Part 4: Challenges in Schools
Part 5: Helping Adults With Autism
Part 6: Health Policy Questions

Wednesday, April 20, 2011

Preliminary Data on Autism and Wandering

About a month ago, I wrote about the CDC's recent efforts to address the issue of wandering in autism and how the "Autistic Self Advocacy Network" (ASAN) was opposed to the CDC's actions.  I'm not going to go into all of the details here, so if you are interested in the details go read my prior post or one of the many other resources on the subject.

The part of ASAN's objection that I wanted to readdress is the idea that "the wandering diagnosis lacks meaningful research support."  Ignoring the obvious data points that existed before, there is now a new data point to consider in the form of a report from the Interactive Autism Network.  IAN is conducting a national survey on wandering in autism and has released some preliminary results based on the answers of 856 families -
Based on responses to the IAN Elopement and Wandering Questionnaire, it is clear that roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings. Between ages 7 and 10, almost 30% of children with ASD are still engaging in elopement behavior, a rate eight times higher than for their unaffected siblings. These figures are especially sobering when 35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means.
Keep in mind that these results are preliminary and are based on the results of an Internet questionnaire.  But at the same time, IAN is not some fly by night operation and has successfully used Internet based questionnaires in published peer-reviewed research before.  These results are also based on a good sized group so I think that these numbers have some validity.

I would draw your attention to the last part of the findings again - 1 in 3 children with autism who wander are unable to communicate who they are or where they live.  If you extrapolate that figure back to the entire population of children with autism, you will find that 15% of all children with autism wander AND are unable to communicate well enough to tell anyone who they are.

There is one other data point in the preliminary results that directly addresses another of ASAN criticisms.  ASAN is of the opinion that children with autism primarily use wandering as a means of fleeing stressful or abusive situations.

However, according to the results, only 33% of the children have used wandering as a method of "escaping demands/anxiety" and 27% have used it to "escape sensory discomfort".  But 54% of these children "enjoy exploring" and 36% "heads for favorite place".  So in other words, it is more likely that the child is blissfully heading into danger simply because they do not understand the danger rather than actively fleeing a hostile situation.

As the report says so well in closing -
Preliminary results of the IAN Elopement and Wandering Questionnaire demonstrate that elopement behaviors are a major problem for approximately half of families with a child on the autism spectrum at some point between the ages of 4 and 17; that eloping children encounter significant dangers; and that families of elopers are often stressed and socially isolated. This data validates long held concerns of families and advocates regarding elopement and ASD. It also gives us our first glimpse into the motivations and states of mind of these children while they are “wandering,” a word that may not fit what parents report: children who are often happy, playful, and focused on a goal when they depart safe spaces.
Or simply put, wandering appears to be a major safety issue in children with autism.  As a parent whose children are on the spectrum, these results are not shocking to me.  What is shocking is that an organization who seeks to speak for the rights of everyone on the spectrum is against dealing with a major safety concern.

ASAN, are you paying attention?

Sunday, April 17, 2011

Studying Low Cholesterol in Autism

A new clinical trial was announced was announced earlier this month that is looking at the relationship between low cholesterol levels and autism.  According to the press release -
Researchers at The Ohio State University Medical Center are studying whether simple nutritional intervention – adding cholesterol to the diets of children with autism spectrum disorders after a test to see if they need it – can improve core autism symptoms.
In excess, cholesterol can be harmful, but a certain amount is crucial for the proper development and maintenance of the brain. So it stands to reason that lower levels of cholesterol, particularly during crucial periods of growth, can lead to mental dysfunction, said principal investigator Dr. L. Eugene Arnold, a child psychiatrist at Ohio State’s Nisonger Center who specializes in researching and treating autism.
(read the rest at the link above)
Full details on the trial are available from the U.S. National Institute of Health's clinic trial website, but the general idea is as follows.
  1. Find out how many children with autism have extremely low total cholesterol.  Low cholesterol in this context will probably mean less than 120.
  2. See if there are unique characteristics of these individuals that set them apart from with other children with autism who have normal cholesterol.
  3. Test whether giving dietary cholesterol supplements will improve "behavioral and other characteristics" in these individuals.
The main part of the study is going to be a 12 week randomized and placebo controlled trial of 60 children immediately followed by a 12 week open-label trial in the same children.

This seems to be a well designed study but I do have one concern - what will be considered an "improvement"?  Is successfully raising the child's cholesterol level back into a normal range going to be considered an improvement or do there have to be clinical significant behavioral improvements to go along with it?  The details provided on the NIH's site don't make that clear.

This may seem like a small point but it really isn't - dietary supplements aren't the same things as drugs.  They don't tend to have large, immediate effects nor do they work as quickly as drugs do.  The supplement may succeed in raising the cholesterol level in these children but will that translate into noticeable changes in behavior in such a short time period?

Remember, almost all of the tests that look at autism look solely at behaviors.  Behaviors are - even in autism - things that are learned. So even if you take out the underlying cause of the behaviors it will take time and effort to unlearn the behaviors.

But more than that, if cholesterol is important for normal development, it might be that the absence of cholesterol during certain periods that impairs normal development.  Simply giving cholesterol isn't going to repair or fix the things that didn't develop properly.  But maintaining a healthy level of cholesterol might prevent other things from going wrong in the future.

Regardless, it is good to see these sorts of trials being done.  I believe that there are many children with autism who will benefit from taking a more biological approach to treating autism.

Saturday, April 16, 2011

PBS Autism Now Series - A Good Start

In recognition of autism awareness month, PBS NewsHour is airing a series of special reports starting on Monday, April 18th.  The initial segment is available online now and I have to say that I am impressed.  I normally don't like these sorts of reports but, if this first segment is any indication, PBS is actually putting together something worth watching this time.

If you don't have a child or family member with autism yourself or you are unfamiliar with the sorts of families who pursue what is typically called biomedical treatments for autism, this is worth watching.  PBS has done a good job of capturing the "yes but" attitude that many of us have, even in the face of the medical establishment telling us otherwise.  We don't accept the "that's just autism" answer that we get to many questions.

My children don't sleep well - that's just autism.  No, you try establishing good bedtime routines and try things like melatonin.  My children have unformed bowel movements and their stomachs are bloated - many kids with autism have that.  No, you go looking for GI problems and try elimination diets and supplements like probiotics to help.

I could go on but I think you get the point.  If you want to help your child with autism, you sometimes have to be willing to go that extra mile and keep pushing even when conventional medicine comes up short.  Not every child with autism needs this extra help but it has been my experience that many do.  I know that my children have benefited greatly from the non-conventional treatments that we have used.

But then again there is a very real cost for going this route that PBS covers as well.  I am not only talking about the financial cost but the emotional, social, and other tolls on family life.  Things change when treating autism becomes one of the focal points of your life.

I hope the rest of the series is as good as the first episode.

Thursday, April 7, 2011

Statistical Significance Humor

The past few weeks (ok, maybe months) have not been kind when it comes to free time for writing.  Hopefully that will be changing in the next few weeks.  But, in the meantime, I saw this comic and it reminded me of some of the research looking for the genetic basis of autism.  You know, the studies that sift through a huge number of possible mutations and declare that these few mutations - even though they only appear in a small handful of cases - are significant when it comes to autism.

Enjoy (via xkcd).

P.S. If you are having trouble with the punchline, count the number of colors compared and consider what a p value is supposed to represent.

Sunday, April 3, 2011

Dietary Change to Prevent Schizophrenia

This isn't directly about autism but since schizophrenia and autism seem to have some biological mechanisms in common I think it is still relevant -
Prevention and Schizophrenia — The Role of Dietary Factors
Adequate prenatal nutrition is essential for optimal brain development. There is a growing body of evidence from epidemiology linking exposure to nutritional deprivation and increased risk of schizophrenia. Based on studies from the Netherlands and China, those exposed to macronutrient deficiencies during famine have an increased risk of schizophrenia. With respect to micronutrients, we focus on 3 candidates where there is biological plausibility for a role in this disorder and at least 1 study of an association with schizophrenia. These nutrients include vitamin D, folic acid, and iron. While the current evidence is incomplete, we discuss the potential implications of these findings for the prevention of schizophrenia. We argue that schizophrenia can draw inspiration from public health interventions related to prenatal nutrition and other outcomes and speculate on relevant factors that bear on the nature, risks, impact, and logistics of various nutritional strategies that may be employed to prevent this disorder.
Full Text
The idea that correcting nutriental deficiencies can help a person with a mental disorder is actually common in the bio-medical part the autism community.  This journal article takes it one step further and suggests that a mental disorder - in this case schizophrenia - might be able to be prevented by correcting these deficiencies.