Wednesday, February 29, 2012

ASAN Announces Discrimination Training Program

The Autistic Self Advocacy Network (ASAN), that lovely organization that wants to control the conversation on autism, has announced that they will hold a "Autism Campus Inclusion (ACI) Summer Institute" program this summer.

The goal of this program is -
The ACI Summer Institute is a week-long training for Autistic college students. The training is meant to prepare students to engage in self-advocacy and pro-neurodiversity activism on their college campuses. 
And they are trying to recruit -
This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger's Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training. Applicants must be currently enrolled in a higher education institute or college in the United States (including the District of Columbia), with at least one year left after completion of the leadership training.
I have said it before and I will say it again.  ASAN is a discriminatory organization that advocates only for the needs of the highest functioning while ignoring the needs of those who are actually disabled by their autism.

If you don't believe me then take a look at that last quoted paragraph.  Do you notice the key phrases "identifies on the Autism Spectrum" and "Autistic Rights"?

The phrase "identifies on the Autism Spectrum" means that ASAN isn't necessarily looking for people who have an actual diagnosis of of autism - autism is a medical disorder that requires a diagnosis from a trained professional, after all.  Instead they want to include everybody, including people who have decided on their own that they have some form of autism.

Because, you know, college students who have decided on their own that they have problems that might be related to some form of autism really should be advocating for needs of people who have been having severe problems their entire life because of autism.

If ASAN was looking to recruit people from all parts of the spectrum, as in a group of people who could represent the needs of everybody with autism, then they would be looking somewhere other than a college campus.  After all, only the highest functioning are able to go to college and be successful there.  The rest, i.e. the overwhelming majority, don't go to college at all, and, if they do, wouldn't be enrolled as a full time student.

No, ASAN is looking for a very specific type of people - people who are high enough functioning to be able to handle college or people who don't really have autism but think they do.  This group is going to be very amenable to the idea that autism is some sort of civil rights movement, as in these people have a "strong interest" in the "Autistic Rights" movement.

If ASAN was really trying to improve the lives of adults with autism and teach them how to advocate on their own behalf, then they would be reaching out to the majority of adults with autism.  They would be working on teaching this group to access the services that are out there and working towards making more services available.

Instead, ASAN is reaching out to those least affected by their autism and training them to talk about autism as some sort of civil rights movement.

They want to train these future "leaders" to shift the focus away from what the majority of people with autism need and to instead put the focus on what a small minority needs.  A minority who "identifies" with a glorified version of autism and wants to preach about their "Autistic Rights".

Discrimination by any other name still stinks.

Friday, February 17, 2012

Autism Recovery : A Two Step Process

At the risk of stating the obvious, helping a child recover from autism can be quite the journey.  It sometimes seems that for every one step you take forward you have to first take two steps back, one to the left, one to the right, jump on one foot while spinning in a circle, and then take that the one step forward.  The whole process can be quite maddening.

I think the reason the process is so frustrating is that we don't understand what autism is and what biological form it takes in the body.  We don't really know why a given therapy works when it works nor do we know why it doesn't work when it doesn't.  There all sorts of theories about why something might or might not work, but when it comes down to it, there is little, if any, hard data about any autism treatment that can be used to pick the appropriate therapies for a specific child.

Or in other words, treating autism is a lot like playing pin the tail on the donkey, except you can't be sure that you are actually holding the tail and the donkey might be located on a different continent.

I have been constantly reminded of this simple, yet maddening facet of autism over the past couple of weeks.  You see, twin A has been having something of a developmental spurt over the past several weeks.  She has started spontaneously doing things that neither her nor her twin have ever done before.  We have seen protodeclarative pointing, spontaneous sharing of interests, and spontaneous comments about the surroundings (i.e. a TACT).

But perhaps best of all, she spontaneously used those three little words that every parent is dying to hear from their child.  She walked up to my wife, gave her a hug, and said "I love you".

So while I don't want to appear unmoved or ungrateful for the progress, the question remains.  Why is twin A making this progress now when she hasn't been able to do any of these things in the past?  And why hasn't her identical twin started doing the same things yet?

I think I know the answer but let's first dispense with the typical explanation. The typical rationale that is trotted out to explain spontaneous improvements like these is that they are just part of the normal maturation process.  As children with autism get older, they will eventually acquire the skills that did not develop properly when they were younger.

But, while this might happen in some children with autism and has happened with my children in some of their skill areas, it has never happened before involving their ability to use language.  Their lack of ability to use language makes up what could be considered the core of their autism and they have never made spontaneous progress in the use of language.  Ever.

It literally took them years of hard work before they could understand any spoken language.  And it took even more years of hard work before they could talk at all.  And then even more years more before they could use more than one word at a time.  Even today, they still have an extremely hard time when they try to talk and an even harder time when they try to use more than one word at once.  They have had some success with alternative communication methods but they are extremely limited even with these alternative methods.

Or, to put it bluntly, the idea that the core disability of their autism suddenly and rapidly started disappearing because of some magical maturation process just doesn't hold water.

So, are you ready to hear my theory about why twin A has made this progress?

The answer is simple, we started her on a new supplement that is supposed to be an antioxidant, anti-inflammatory, anti-fungal, and pro- very yellow pee.  This magical powder can also cure cancer, turn the moon into yellow cheese, and make everything you touch turn into gold.  Or maybe that last bit was supposed to be: make a lot of money for the company that sells the supplement.

But seriously, I am actually crediting twin A's recent progress to an over the counter supplement.  Now you might ask how I can do this with a straight face and without any double blind (or really any) studies to prove that my claims are true.  After all, parents are supposedly very easy to confuse and are willing to accept any possible correlation as causal simply because the two things happen at the same time.

Well, I have my reasons and here they are:

First, while we have tried many things in the past with little or no effect, we have also tried a few things that have made a large difference as well.  The most notable examples here for the twins are the GFCF diet and zinc supplements.

Second, identical twins - or at least our identical twins - tend to stay very close when it comes to abilities or lack of abilities.  They do get a little ahead of each other at times but the other one almost always starts to catch up within a month or so.

It was well over a month and twin B did not start showing any of the same progress.  That is until we started her on the same supplement.  She has not yet caught up to her sister and the distance is still growing but she has also started showing similar progress after we started the supplement.

Third, for the past three years, twin A has lagged her sister during the winter months.  She has historically struggled with some sort of seasonal depression.  Now maybe our steps to mitigate the seasonal depression caused some of the progress but that is a topic for another time.  The short answer is that nothing that we did for that should cause an increase in language.

Fourth, in case you can't tell from other things I have written, I am something of a skeptic when it comes to the science and treatment of autism.  I don't accept anything without some sort of proof or evidence supporting it.

But, in this case, this new supplement was the only thing that has changed in the past six months and we aren't the only ones noticing the changes in twin A.  Several different therapists as well as her teachers in school have independently commented on her recent progress.  So we aren't imagining the progress.

So, after reading the above, you might be wondering if I have finally lost it and whether I am really suggesting that a simple powder that you buy over the counter can magically make minimally verbal children start talking.

Well, the short answer to that question is both a no and a yes.

There is no magical powder that can teach a non-verbal child to talk.  You can't package up the knowledge of the English language into some powder and spoon it into a child.

But, and this is really the entire point of this post, recovering from autism is never going to be a single step process because recovering from autism involves more than just treating behaviors.  Recovering from autism is about mitigating behaviors but it is also about attempting to treat the underlying biological problems that lead to the behaviors.

You cannot effectively treat the behaviors of autism without also attempting to address the underlying causes.  Or maybe I should say that differently because you can make some progress without going after the underlying cause.  How about this: treatments for autism are going to be the most effective when you can target both the underlying cause in addition to the visible behavior.

So while I don't really believe that some new magical supplement gave twin A the ability to communicate better, I do believe that the supplement managed to partially correct one or more of her biological imbalances that are caused by or related to her autism.

Beyond that, she is simply expressing abilities that she has learned over the years of therapy or maybe showing off new abilities that she has been able to learn recently because she is no longer blocked from learning them.

But whatever the source of her improvement, we will take it.

Friday, February 10, 2012

Fried Potatoes or Why a Self-Limited Diet Is a Problem

Did you know that eating only fried potatoes and rice balls can lead to dietary deficiencies? I found that out this morning when browsing through some newly published studies and ran across this one-
Fried-Potato Diet Causes Vitamin A Deficiency in an Autistic Child.
A 5-year-old boy with autism developed dry eye and xerophthalmia. Serum vitamin A was undetectable. Dietary history revealed a markedly altered intake consisting of only fried potatoes and rice balls for 2 years. Fried potatoes contain no vitamin A. Autism is a multifaceted developmental disorder infrequently accompanied by abnormal eating practices. To the authors' knowledge, most children with autism who develop dietary vitamin A deficiency have consumed an excess of fried potatoes. Attention to possible vitamin A deficiency is essential when fried potatoes are consumed exclusively
However, as mildly amusing as the title and text of the study are, it is talking about what is a extremely serious problem for many children with autism - self-limited diets.  There are many children with autism who will self-limit what foods they will eat and will refuse to eat anything but a few very specific items.

For those of you who have not seen this first hand, let me just say that when food becomes one of the rigidities of autism you are in for a very bad time.  At best, the child will favor a few foods and simply refuse to eat anything but those favored foods.  At worst, it will not only have to be a specific food but a specific food that is prepared and presented in a specific way.  In the worst of the worst cases, if you so much as change one ingredient, one step in the preparation process, or put the dish or utensil even a millimeter out of place, then the child will have a meltdown and refuse to eat - sometimes for the rest of the day.

We have been very fortunate in that our children have never gotten this bad with their eating problems.  The youngest has no real food issues but her older sisters are limited in what they will eat.  They will only eat certain things and will refuse to try anything new but we can (and do) push them on the food issue without triggering any undesired behaviors.

But even in the best of cases a self-limited diet causes problems.

For one thing your ability to go anywhere with the child becomes restricted.  You either spend your time carting around the food that they will eat (if you can) or you try and schedule every trip out of the house around meal times.  Going on vacations or traveling becomes even more challenging than it is with a typical child who has autism.

Another, more serious, problem is that a limited diet can lead to nutritional deficiencies. There are a number of basic nutrients that come only from what you eat.  If you don't eat enough of the proper types of food then you are going to have problems.  A case in point is the child mentioned in the abstract above.  He was deficient in vitamin A because he only ate two types of food and that food did not contain vitamin A.

Although, I have to caution against the widespread assumption that all (or even most) nutritional deficiencies in autism are due to self-limited diets.  My children have problems maintaining basic nutritional levels even when the foods they eat give them plenty of the nutrients or when they receive daily supplements of the nutrient.

For example, all three girls have chronic problems with being iron deficient even though they eat a diet that is high in iron.  The twins have problems maintaining an appropriate level of zinc even though they get daily zinc supplements.

So when you are looking at nutritional problems, you have to not only consider whether the diet is a problem but also whether there might be something else going on that needs to be addressed.

This is one area where, in my opinion, mainstream medicine falls flat on its face.  Given all of the documented nutritional problems and picky eating in autism, doctors should do regular nutritional screening in every child with autism as a matter of course.  It doesn't matter whether there are any obvious physical signs or any specific complaints, the problems are widespread enough that some simple testing can go a long way towards stopping problems before they start.

Tanoue K, Matsui K, Takamasu T. Fried-Potato Diet Causes Vitamin A Deficiency  in an Autistic Child. JPEN J Parenter Enteral Nutr. 2012 Feb 7. [Epub ahead of print] PubMed PMID: 22318966 DOI: 10.1177/0148607111436280

Thursday, February 9, 2012

Maternal Immune Activation and Autism

Two new studies on the connection between the mother's immune system and autism popped up on Pubmed this morning.  Both studies use mice to demonstrate that a mother's immune being stimulated during pregnancy is capable of producing lasting the changes in her offspring.

The first study goes straight to the heart of the matter and demonstrates that mice born to a mother whose immune system was stimulated during pregnancy have problems in the three core areas of autism.  Or at least the mouse equivalent of the three core ares.
Maternal immune activation yields offspring displaying mouse versions of the three core symptoms of autism.
 The core symptoms of autism are deficits in social interaction and language, and  the presence of repetitive/stereotyped behaviors. We demonstrate that behaviors related to these symptoms are present in a mouse model of an environmental risk factor for autism, maternal infection. We stimulate the maternal immune system by injecting the viral mimic poly(I:C) during pregnancy, and analyze the social and  communicative behaviors of the offspring. In one test, young pups respond to a brief separation from the mother with ultrasonic vocalizations (USVs). We find that, compared to pups born to saline-injected mothers, pups born to maternal immune activation (MIA) mothers produce a lower rate of USVs in the isolation test starting at day 8. The quality of the vocalizations is also different; analysis of sound spectrograms of 10day-old pups shows that male pups from MIA mothers emit significantly fewer harmonic and more complex and short syllables. These communication differences are also apparent in adult offspring. Compared to controls, adult MIA males emit significantly fewer USVs in response to social encounters with females or males, and display reduced scent marking in response to female urine. Regarding a second autism symptom, MIA males display decreased sociability. In a third test of characteristic autism behaviors, MIA offspring exhibit increased repetitive/stereotyped behavior in both marble burying and self-grooming tests. In sum, these results indicate that MIA yields male offspring with deficient social and communicative behavior, as well as high levels of repetitive behaviors, all of which are hallmarks of autism.
The second study, which is far more interesting to me, looks at what exactly the mother's immune does to her offspring.  The short answer here appears to be that it changes how genes are expressed in her offspring.  It effectively turns down the volume on many of the genes that are needed for proper neural development.
Maternal immune activation by LPS selectively alters specific gene expression profiles of interneuron migration and oxidative stress in the fetus without triggering a fetal immune response. 
Maternal immune activation (MIA) is a risk factor for the development of schizophrenia and autism. Infections during pregnancy activate the mother's immune system and alter the fetal environment, with consequential effects on CNS  function and behavior in the offspring, but the cellular and molecular links between infection-induced altered fetal development and risk for neuropsychiatric disorders are unknown. We investigated the immunological, molecular, and behavioral effects of MIA in the offspring of pregnant Sprague-Dawley rats given  an intraperitoneal (0.25mg/kg) injection of lipopolysaccharide (LPS) on gestational day 15. LPS significantly elevated pro-inflammatory cytokine levels in maternal serum, amniotic fluid, and fetal brain at 4h, and levels decreased but remained elevated at 24h. Offspring born to LPS-treated dams exhibited reduced social preference and exploration behaviors as juveniles and young adults. Whole genome microarray analysis of the fetal brain at 4h post maternal LPS was performed to elucidate the possible molecular mechanisms by which MIA affects the fetal brain. We observed dysregulation of 3285 genes in restricted functional categories, with increased mRNA expression of cellular stress and cell death genes and reduced expression of developmentally-regulated and brain-specific genes, specifically those that regulate neuronal migration of GABAergic interneurons, including the Distal-less (Dlx) family of transcription factors required for tangential migration from progenitor pools within the ganglionic eminences into the cerebral cortex. Our results provide a novel mechanism by which MIA induces the widespread down-regulation of critical neurodevelopmental genes, including those previously associated with autism.
The bottom line from both studies is that the mother's immune system, if suffficiently stimulated during pregnancy, is more than capable of producing some of the behavioral and biological symptoms of autism.  These results add to the existing literature that has found a relationship between maternal infections and mental disorders such as autism and schizophrenia.

So the next questions that needs to be addressed - the crucial ones - are whether the biological changes demonstrated in mice also happen in people and what is the catalyst that changes a routine event - maternal immune system activiation - into something else entirely.


1. Malkova NV, Yu CZ, Hsiao EY, Moore MJ, Patterson PH. Maternal immune activation yields offspring displaying mouse versions of the three core symptoms  of autism. Brain Behav Immun. 2012 Jan 30. [Epub ahead of print]  PubMed PMID: 22310922 DOI: 10.1016/j.bbi.2012.01.011

2. Oskvig DB, Elkahloun AG, Johnson KR, Phillips TM, Herkenham M. Maternal immune activation by LPS selectively alters specific gene expression profiles of interneuron migration and oxidative stress in the fetus without triggering a fetal immune response. Brain Behav Immun. 2012 Jan 30. [Epub ahead of print] PubMed PMID: 22310921 DOI: 10.1016/j.bbi.2012.01.015