Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc.

It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing. A few things you can expect to hear from others, or read in blogs, etc:

“You’re going to screw your kid up if you get him vaccinated.”
“You didn’t vaccinate? Why the hell not?”

“If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
“If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”

“Why are you trying to mainstream him at school, he would be better off in a special placement.”
“Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”

“You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
“Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”

“You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
“Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”

These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.

In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause). Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure. These are all things you will have to decide for yourself.

As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure – sometimes referred to as recovery – him through diet or other medical treatment. There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy. Importantly, the vast majority of these advocates are not autistic themselves.

Once you realize this, you will discover a separate world of autistic advocates for autism. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured. You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.

About two months ago, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”

Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.

Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.

Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’ challenge reflects this attitude:

Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.

I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.

I am, to use your words, “just a plain, ordinary, loving, proud parent.”

Every day.

Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent. Everything else is just details.

I don’t believe that autism is mercury poisoning, I’ve said that before. As for the number / types of vaccines being a trigger (I don’t believe it is a cause in the Newtonian sense), I’ve been thinking about it lately but haven’t seen any data to help me make a my mind.

Along those lines, the Age of Autism (which is, I must note, very openly of the opinion that mercury in the form of thimerosol in vaccines and/or the number of vaccines given to kids is the primary cause of most autism) yesterday pointed to the 2008 pediatrics vaccination schedules (0-6 years and 6 years and over).

WOW!!

That was about all I could think when I looked at the schedule. The schedule in and of itself doesn’t lead me to believe anything different than what I knew before, but it does give me an extra data point. The human immune system is an incredible, incredibly intelligent, incredibly complex system. (Though I’m sure there are many books specifically on the subject, The Genius Within includes a very description of how the process works.)

The challenge with a complex system (as opposed to a merely complicated system) is that the outcome of any given input to the system can not be predicted and that a specific cause for a measured outcome cannot be identified. From Dave Snowden (who thinks about complexity a lot):

• Complex systems can not be predicted, they are non-causal (taking cause in its normal Newtonian sense) in nature they evolve and the same thing will not happen again twice, we can predict aspects of the system and different aspects of time but never the outcome of the whole system
• The concept of a non-causal system is a very difficult one to grasp as the west abandoned the idea at the time of the Enlightenment (Vico and others were prophetic in arguing against this).
• A complex system can be simulated – which increases understanding but simulation should not (although it is often) confused with prediction
• We can understand starting conditions as a complex system evolves and we can influence their evolution if we focus on barriers and attractors (1st and 2nd order constraints) but not if we look at the end point (so attempting to predict makes things worse not better)
• Humans tend to premature convergence (seeing a pattern too quickly before it is stable) and also to retrospective coherence (implying past causality where there was none). Both of these tendencies are pervasive and dangerous

Which brings me to a very interesting dilemma:

• If autism (has a cause and) is indeed caused by an insult to the immune system, we can not predict which vaccine or combination of vaccines will cause it; and,
• Once autism is caused in an individual we can not look back through their vaccination history to determine which vaccine it was that did the causing.

And this doesn’t even bring into play the complexity of the interaction between the immune system and the rest of the body or the role of genetics, and genetic predisposition.
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Unfortunately, Kev has since shut down the blog (as you will see if you click the link above to LB/RB). To maintain some continuity and a record of my posts, I’ve decided to republish them here. This is the first of four posts I published at LB/RB.

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Earlier this summer I read Douglas Hofstadter‘s new book, I Am a Strange Loop. As Hofstadter mentions early in the book, a more appropriate title would have been “I” is a Strange Loop; the book is about the nature of consciousness, that elusive concept of “I”, and not an autobiographical work as the actual name of the book suggests.

Hofstadter’s works have been among my favorites since I read his first book, Godel Escher Bach: An Eternal Golden Braid, in high school. The new book is, in fact, an updating of the ideas he first expressed in GEB. I have long hoped that he might address issues of the mind and consciousness in terms of atypical minds (such as autism), but aside from some passing discussion of those minds, I Am a Strange Loop does not provide any real insight into how the concept of “I” fits with autism.

On Monday, I was pleased to find a paper that specifically addresses the question of autism and “I”, Self-Referential Cognition and Empathy in Autism, co-authored by Michael V. Lombardo, Jennifer L. Barnes, Sally J. Wheelwright, and Simon Baron-Cohen. From the paper’s abstract:

Background. Individuals with autism spectrum conditions (ASC) have profound impairments in the interpersonal social domain, but it is unclear if individuals with ASC also have impairments in the intrapersonal self-referential domain. We aimed to evaluate across several well validated measures in both domains, whether both self-referential cognition and empathy are impaired in ASC and whether these two domains are related to each other.

Conclusions/Significance. We conclude that individuals with ASC have broad impairments in both self-referential cognition and empathy. These two domains are also intrinsically linked and support predictions made by simulation theory. Our results also highlight a specific dysfunction in ASC within cortical midlines structures of the brain such as the medial prefrontal cortex.

Instead of looking at autism as a syndrome of self-focus (the Kanner approach), the paper starts from the concept of “absent-self” put forth by Uta Frith in her book Autism: Explaining the Enigma. I had not heard of Frith before reading this paper, so I can’t really comment on her ideas. But the paper itself seems to make sense. I’m still going through it, trying to understand all that they are studying and what their results mean. (I did learn a new word: alexithymia – difficulty identifying and describing one’s own emotions.)

My first time through I Am a Strange Loop was to soak in the big concepts. I typically wait a few months before re-reading something like this so I can get into the details, but I think I’ll start again sooner than that. (At the moment, I’m reading Steven Pinker‘s latest book The Stuff of Thought.) Now that I have a bit more information about autism and “I”, I’ll have a better context for processing what I read.

Another interesting note about the paper, it was originally published by the Public Library of Science under a Creative Commons license. The PLoS home page describes it as a “A new way of communicating peer-reviewed science and medicine”, so I will assume the paper has been appropriately peer reviewed. But I think I will do a bit more checking just to be sure. (Of course, any insight from readers here would be greatly appreciated.)

I discovered the study, entitled The Level and Nature of Autistic Intelligence (available online through the journal Psychological Science, on the Autism pages of About.com in the article Once Again, the World Discovers That People with Autism are Bright but Different. There is also a discussion of the study on the Science Daily website.

The study was written by Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, and Laurent Mottron. Here’s the abstract of the paper:

Autistics are presumed to be characterized by cognitive impairment, and their cognitive strengths (e.g., in Block Design performance) are frequently interpreted as low-level by-products of high-level deficits, not as direct manifestations of intelligence. Recent attempts to identify the neuroanatomical and neurofunctional signature of autism have been positioned on this universal, but untested, assumption. We therefore assessed a broad sample of 38 autistic children on the preeminent test of fluid intelligence, Raven’s Progressive Matrices. Their scores were, on average, 30 percentile points, and in some cases more than 70 percentile points, higher than their scores on the Wechsler scales of intelligence. Typically developing control children showed no such discrepancy, and a similar contrast was observed when a sample of autistic adults was compared with a sample of nonautistic adults. We conclude that intelligence has been underestimated in autistics.

Unfortunately, you must be a member of the Association of Psychological Sciences to get the article from their website. Another option, the one I’m pursuing, is to get a copy from your local public library (or school library, if you are a student).

I should have it in a couple of weeks, I’ll post more thoughts once I’ve actually read it.

As I’ve read the book, I’ve found myself unconsciously evaluating the information presented through a diagnostic lens, trying to decide if he was indeed autistic. (See this Google search for a lot of discussion about the topic.)

I’ll post my thoughts on the matter after I’ve finished the book and had the chance to digest it all, but in the meantime the following question came to mind:

Does it really matter if Einstein were autistic or not?

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tagged as: Autism, Amanda Baggs, Anderson Cooper, Sanjay Gupta, Intelligence, Neurodiversity, Autism Advocacy

An example that recently struck me was how many people still don’t realize that “low-functioning” autistics can be very intelligent.

In her new book Strange Son, author Portia Iverson describes her initial reaction to the idea of an intelligent “low-functioning” autistic:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. … There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

This exchange between Iverson and Happe occurred in Spring 1999 and serves as the starting point of the story that Iverson tells in her book. Not to spoil the ending, but by the end of her story (circa 2003), Iverson comes to the conclusion that to me today seems so obvious: Tito is not one-in-a-million, he is not “his own disorder.”

Fast forward several years to two days ago. From his blog, Dr. Sanjay Gupta of CNN describes a recent meeting he had with Amanda Baggs, author of the ballastexistenz blog:

Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Trying harder starts with getting the word out. But how to go about it? I’m glad that Dr. Gupta has written about Amanda, and that Anderson Cooper had her on his show last night (I’ve not seen it yet). Too much of the coverage of autism is doom and gloom, maybe this will help to get the word out to a few more people.

But I have the feeling it is going to be a long, hard trail, because even those that should know better by now obviously don’t know yet. Dr. Gupta captures this problem well in his closing paragraph:

I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism.

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There is also a story about Amanda posted on CNN Health.
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Update: From Anderson Cooper’s website on CNN, it looks like he may have more with Amanda on tonight’s show (22 Feb 07).
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tagged as: Autism, Amanda Baggs, Anderson Cooper, Amanda Baggs, Intelligence