"What is Autism"

[albeto.]

I came across an interesting blog post the other day and thought I'd share. I decided to share it here on the "chat" forum rather than learning challenges because this isn't about learning, and it isn't something that can be [or should be] separated from "regular" or typical conversation, in my opinion anyway. The more we can identify, recognize, and understand autism, the more we can see its prevalence in our lives. This isn't limited to parents with special needs kids, or wives with Asperger husbands, or people who know someone at church or in a co-op. This is for all of us, as integral parts of our own communities. This is for all of us to consider redefining what autism means to us. Rather than seeing it as a handicap, a disability, or a challenge, this blogger challenges us to see it as a enetically-based human neurological variant.

 

I offer this here because each day someone hears the news that a child or loved one fits the diagnosis for autistic spectrum disorder. This can feel, for many of us, like an enormous pill to swallow. I recall feeling like I had a lump in my throat for nearly a week when my son was diagnosed PDD-NOS near his sixth birthday. It did feel like I had swallowed a horse pill that would never go down. I didn't not feel uncomfortable, emotionally and physically for a long time. I recall hearing nothing but bad news, scary prognoses, and general sympathy from everyone. It was devastating and I hope in time it will be no more devastating for parents to hear than to find out their child is left-handed. That's not to say accommodations will be as easy as grabbing a pair of left-handed scissors from Office Max, but the more we know, the more we can understand how to accommodate those things we can, and should accommodate. 

 

Anyway, I thought I'd share:

 

 

 

What Is Autism?

MARCH 1, 2014

How many websites are there that have a page called something like “What Is Autism?†or “About Autism� How often do organizations, professionals, scholars, and others need to include a few paragraphs of basic introductory “What Is Autism?†text in a website, brochure, presentation, or academic paper?

 

I’ve seen so many versions of that obligatory “What Is Autism†or “About Autism†text. And they’re almost all terrible. For starters, almost all of them – even the versions written by people who claim to be in favor of “autism acceptance†or to support the neurodiversity paradigm – use the language of the pathology paradigm, which intrinsically contributes to the oppression of Autistics.

 

On top of that, most of these descriptions of autism – even many of the descriptions written by Autistics – propagate inaccurate information and false stereotypes. Some are so bad that they actually quote the DSM.

 

Of course, there are also a few really good pieces of “What Is Autism†text out there. But for the most part, they’re rather personal pieces, about the authors’ own unique experiences of autism, rather than general introductory definitions.

 

What is needed is some good basic introductory “What Is Autism†text that is:

1.) consistent with current evidence;

2.) not based in the pathology paradigm;

3.) concise, simple, and accessible;

4.) formal enough for professional and academic use.

 

Since I couldn’t find such a piece of text elsewhere, I wrote one. And here it is.

 

I hereby give everyone permission to reprint the text below, in whole or in part, whenever you need a piece of basic “What Is Autism†or “About Autism†text. Please do credit me for writing it (and of course, a proper citation is a must in academic writing). But really, as long as credit is given, anyone can go ahead and use this text for free.

 

WHAT IS AUTISM?

 

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

 

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system†than non-autistic individuals.

 

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

 

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

 

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,†by those who are unaware that the social challenges faced by autistic individuals are merely by-products of the intense and chaotic nature of autistic sensory experience.

 

Autism is still widely regarded as a “disorder,†but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

 

http://neurocosmopolitanism.com/what-is-autism/

[Monica_in_Switzerland]

I enjoyed most of this article.  I have a very close member of the family who is low-functioning (non verbal) autistic, and I enjoyed learning a bit more about the root causes of her seeming social disability.

 

However, I am concerned that a paradigm shift to "neurodiversity" as in, Neurotypical is to autistic as blue eyes are to green eyes could mean the reduction of services to those children and adults who NEED those services to learn to live in this world.  After all, if there is nothing "wrong", why should insurance or government provide any sort of adaptive services?

 

I have no problem with acceptance of disability across the board- all people are equal in the eyes of God and the law, and should carry equal value among fellow men as well. 

 

But claiming that autism, especially severe autism as in the case of my family member is simply a "variant on normal" is a disservice.  My loved one may never be able to live unassisted, and certainly won't be able to without significant therapy and continued research into her condition and coping mechanisms for her "wiring". 

 

I get the impression that this article was written by a person dealing with high functioning ASD, which does present more-or-less like a variant of normal, and we should all be well-informed enough to know how to interact with a person on the spectrum.  I like the article for that aspect. 

 

Anyway, I'm not trying to be argumentative, but I think the "neurodiversity" idea is a bit odd.  Acceptance and compassion for disability, yes!  A more positive language, sure!  But autism can be a debilitating condition, and I feel like brushing it off as neurodiversity is a disservice. 

[Alexigail]

nm

[Laurie]

Another answer to the question, "What is Autism" is that it is a vaccine injury, specifically the result of Thimerosal (mercury) used as a preservative in vaccines. 

 

I would like to know if the blogger/author has read the book The Age of Autism:  Mercury, Medicine, and a Man-Made Epidemic (by Olmsted and Blaxill).  The authors do an exceptional job of showing how ethylmercury products for commercial use came onto the market in the 1930's in the form of seed disinfectants (Ceresan), lumber treatments (Lignasan), and as a preservative in diptheria vaccines (Merthiolate)     They go on to explore the direct connections that can be made to these products and some of Dr. Leo Kanner's original 11 autism cases. 

 

 

If anyone is interested, here's a youtube video called How Mercury Triggered The Age of Autism that is based on information contained in the book: 

 

 

 

 

 

 

 

 

 

 

 

 

[albeto.]

Anyway, I'm not trying to be argumentative, but I think the "neurodiversity" idea is a bit odd.  Acceptance and compassion for disability, yes!  A more positive language, sure!  But autism can be a debilitating condition, and I feel like brushing it off as neurodiversity is a disservice.

 

I hear ya. I don't see your comments as being argumentative. In fact, I appreciate the thoughtful comments. I was hoping for such. For what it's worth, I didn't read this blog post as brushing off the seriousness of the challenges presented by autism, but as an introduction to changing the vocabulary with which we talk about and identify autism. Words have power, and this is a place to start offering empowerment to a group of people who have been, until very recently, essentially brushed off altogether. Recognizing that the brain responds more acutely to the kind of stimuli your brain or mine can easily process would ideally lead to the kinds of accommodations that would allow them to enjoy experiences otherwise denied them by virtue of the intolerable discomfort (ie, Sensory Friendly Films). And although it's true not everyone would benefit from everything offered, it's certainly a worthwhile direction to be moving. 

[Monica_in_Switzerland]

Another answer to the question, "What is Autism" is that it is a vaccine injury, specifically the result of Thimerosal (mercury) used as a preservative in vaccines. 

 

I would like to know if the blogger/author has read the book The Age of Autism:  Mercury, Medicine, and a Man-Made Epidemic (by Olmsted and Blaxill).  The authors do an exceptional job of showing how ethylmercury products for commercial use came onto the market in the 1930's in the form of seed disinfectants (Ceresan), lumber treatments (Lignasan), and as a preservative in diptheria vaccines (Merthiolate)     They go on to explore the direct connections that can be made to these products and some of Dr. Leo Kanner's original 11 autism cases. 

 

 

If anyone is interested, here's a youtube video called How Mercury Triggered The Age of Autism that is based on information contained in the book: 

 

I neither agree nor disagree with you.  I did raise my eyebrows at the article when it stated that autism begins in the womb, as my last understanding was that our current "hypothesis" is that autism is a genetic predisposition + (unknown) environmental triggers in early life. 

[Monica_in_Switzerland]

I hear ya. I don't see your comments as being argumentative. In fact, I appreciate the thoughtful comments. I was hoping for such. For what it's worth, I didn't read this blog post as brushing off the seriousness of the challenges presented by autism, but as an introduction to changing the vocabulary with which we talk about and identify autism. Words have power, and this is a place to start offering empowerment to a group of people who have been, until very recently, essentially brushed off altogether. Recognizing that the brain responds more acutely to the kind of stimuli your brain or mine can easily process would ideally lead to the kinds of accommodations that would allow them to enjoy experiences otherwise denied them by virtue of the intolerable discomfort (ie, Sensory Friendly Films). And although it's true not everyone would benefit from everything offered, it's certainly a worthwhile direction to be moving. 

 

I think you must have edited while I was asleep, because I got a longer and a shorter comment in my inbox!  I'd like to respond to some of the ideas in your longer comment, because I think it is very worthy of discussion!

 

First, words have power:  Yes, absolutely!  But I feel like society's current trend is to say, "Words have power, so let's reduce that power by being more vague, more euphemistic, and constantly changing definitions, the acceptable terms list, etc."  I think this is a false path.  A better route would be to simply destigmatize mental/neurological pathologies through educational outreach.  I feel like the huge autism campaigns are already making great strides.  My loved one's mom can go to the park, and when her child acts a particular way, she can say to the other park visitors, "My child is autistic." and receive an immediate "OH!  Now I get it!" because people have heard that term and have at least some idea of what it means.

 

If I were to take a physical example, I think I could explain more clearly my problem with "positive speech": In a room, we have a person with perfect vision, two people with varying eyeglass prescriptions, a color-blind individual, a person with blind spots, a person with macular degeneration, and a person who is completely blind.  We do not call this roomful of people "optical diversity".  We can see that some people have normally functioning eyes (this could be a range of acceptable functional vision for daily life without glasses), and the others have varying degrees of optical disability, from mild to severe, requiring different adaptive devices or lifestyle changes. 

 

Neurodiversity just seems like an inaccurate term, IMO.  Maybe it is that autism is such a broad spectrum that causes the problem.  Some people present as just being quirky, and perhaps need to treatment at all, but just a little more patience or understanding that all compassionate humans should be willing to give without a medical dx.  But for many or most, autism is pathological, and it is not making a value judgement on the person to say they suffer from a pathology. 

 

As modernists, we have become very tied to our value as being something that relates to our abilities.  So, we must use very convoluted language to avoid "devaluing" someone.  Words like "alternately abled" over disabled, neurodiverse over "low functioning", etc.  As a Christian, I find this so sad.  Our value is inherent!  We have this knee-jerk reaction that if Susie isn't good at math, she must be great at soccer or creative writing.  If Joe cannot learn to play the violin, he must be gifted academically.  Jamie isn't very pretty, but her sense of humor is lovely!  Etc. 

 

No!  We must appreciate that humans are inherently valuable, regardless of ability in any domain!  This is what the push should be for, not for continually shifting language use to try to "hide" the fact that some people are just simply not born "equal", physically, neurologically, mentally, or morally.  Our equality is God-given, not societal determined.  If we truly believe that, we do not need to be afraid of using accurate and clear language to describe disability. 

 

I am soooooo off topic...

 

Anyway, the fear for me is that diversity is not a handicap.  Diversity is implied equality in abilities, wrapped in different packages.  It is a term that works well for race, culture, mother tongue, personality types, etc, because in all these cases, nothing is actually malfunctioning in the person.  We should all be aware of and accommodating of a wide range of diverse ability levels- intellectually, physically, socially, etc.  But Diversity capital D to me implies that "there is nothing to fix/treat/accommodate, we must only appreciate"- perhaps because it's constant use as a political buzz term has caused it to lose meaning. 

 

If we DON'T call autism pathological, then where is the motivation to continue research and assistance? 

 

Sorry, this is a bit stream-of-consciousness...  lol.

[albeto.]

Neurodiversity just seems like an inaccurate term, IMO.  Maybe it is that autism is such a broad spectrum that causes the problem.  Some people present as just being quirky, and perhaps need to treatment at all, but just a little more patience or understanding that all compassionate humans should be willing to give without a medical dx.  But for many or most, autism is pathological, and it is not making a value judgement on the person to say they suffer from a pathology.

 

If good health is valued over bad health, then it is a value judgement to identify autism as a pathology. It identifies the value of their health as being sub-par. I agree with the blogger's concept that the health of the person isn't sub-par because they are not compatible [convenient?] with the majority of the population. None of this speaks to the value of the individual, however, and I don't think the two are correlated. 

 

Anyway, the fear for me is that diversity is not a handicap.  Diversity is implied equality in abilities, wrapped in different packages.  It is a term that works well for race, culture, mother tongue, personality types, etc, because in all these cases, nothing is actually malfunctioning in the person.  We should all be aware of and accommodating of a wide range of diverse ability levels- intellectually, physically, socially, etc.  But Diversity capital D to me implies that "there is nothing to fix/treat/accommodate, we must only appreciate"- perhaps because it's constant use as a political buzz term has caused it to lose meaning. 

 

If we DON'T call autism pathological, then where is the motivation to continue research and assistance?

 

Evidence. ;-)

 

[Monica_in_Switzerland]

If good health is valued over bad health, then it is a value judgement to identify autism as a pathology. It identifies the value of their health as being sub-par. I agree with the blogger's concept that the health of the person isn't sub-par because they are not compatible [convenient?] with the majority of the population. None of this speaks to the value of the individual, however, and I don't think the two are correlated. 

 

Evidence. ;-)

 

 

I would certainly value normal mental function over low function or dysfunction.  This would hold true for mental illness of many kinds, schizophrenia, OCD, autism...  By "value", I mean that I would find normal function more desirable to possess.  It does not mean I would find an individual's worth to be more or less depending on a health condition.  I do not have a child with any of these conditions, nor do I have these conditions myself.  But I would guess only a small handful of people whose children have these conditions say, "Gee, I'm so happy my kid is neurodiverse!"  Again, it doesn't mean they don't love their autistic child. 

 

This closest I can come to this in terms of personal example is this:  My youngest was born with clubfeet.  The treatment for this is casting, minor surgery, bracing, and possibly extensive surgery if necessary.  We just found out our new baby will have the same condition.  When my little girl was born with her crooked feet, let me tell you I LOVED those feet.  When we took her first set of casts off, I CRIED to see how her "birth feet" were changing.  I loved her disability as part of her, and I was angry that I needed to "fix" her disability to give her a healthy, normal, pain-free life.  But of course we continued treatment, because she DID have a pathological condition that would greatly impact her life if left untreated.  At no point, before or after her treatments, did her "value" as an individual change.  But the functional value of her feet greatly increased with treatment.  I imagine, in some very small way, this can compare to treatment for autism. 

 

Evidence?  There is none, of course, because we are talking about one mom's desire to change autism from a pathology paradigm to a diversity paradigm.  This is not a trend in the medical literature. 

 

I wonder if there is any disease, illness, or pathology that has ever been DECLASSIFIED into variance on normal, and if so, if treatment coverage for the said disability/variance was affected. 

[albeto.]

I would certainly value normal mental function over low function or dysfunction.  This would hold true for mental illness of many kinds, schizophrenia, OCD, autism...  By "value", I mean that I would find normal function more desirable to possess.  It does not mean I would find an individual's worth to be more or less depending on a health condition.  I do not have a child with any of these conditions, nor do I have these conditions myself.  But I would guess only a small handful of people whose children have these conditions say, "Gee, I'm so happy my kid is neurodiverse!"  Again, it doesn't mean they don't love their autistic child. 

 

This closest I can come to this in terms of personal example is this:  My youngest was born with clubfeet.  The treatment for this is casting, minor surgery, bracing, and possibly extensive surgery if necessary.  We just found out our new baby will have the same condition.  When my little girl was born with her crooked feet, let me tell you I LOVED those feet.  When we took her first set of casts off, I CRIED to see how her "birth feet" were changing.  I loved her disability as part of her, and I was angry that I needed to "fix" her disability to give her a healthy, normal, pain-free life.  But of course we continued treatment, because she DID have a pathological condition that would greatly impact her life if left untreated.  At no point, before or after her treatments, did her "value" as an individual change.  But the functional value of her feet greatly increased with treatment.  I imagine, in some very small way, this can compare to treatment for autism.

 

We're talking about two different things here, I think. One is the condition and the effect that condition has in one's life. Club feet or severe emotional withdrawal are both conditions that make interaction with the general population more difficult. Addressing these components increases the likelihood for the individual to enjoy circumstances that would otherwise be out of reach. By identifying and addressing the challenge, we're not saying anything about the intrinsic "value" of the person. The intrinsic "value" of a person is not identified by their morphological parts (be it appendages or neurology). Do you think we are agreed on this?

 

Evidence?  There is none, of course, because we are talking about one mom's desire to change autism from a pathology paradigm to a diversity paradigm.  This is not a trend in the medical literature. 

 

I wonder if there is any disease, illness, or pathology that has ever been DECLASSIFIED into variance on normal, and if so, if treatment coverage for the said disability/variance was affected.

 

As with any condition, whether it's personal like behaviors, or global like weather patterns, the more we understand it the better we can work with it. The best way to understand something is to analyze it logically, rationally, relying on observation, data collection, critical analysis of the information presented, experimentation, and the like. There's new information about autism coming in all the time, and the evidence gathered through scientific research is invaluable to this end. This blog isn't about one mom trying to change the autism paradigm, it's the latest example in a growing trend of people with autism rejecting the identity of being "broken," or "not well" or in some way "ill." I think about it this way - there exists no measure for the perfect or ideal neurological make-up. There is no resource to which we can go to find what the perfect brain would be like. We cannot point to a brain, or a person who is still using their brain, and say, "This brain right here has developed perfectly without flaw. This is the ideal from which all others should be measured." There is no "right" or "wrong" here. It's not so conveniently defined that way. 

 

That is not to say those challenges affected by autistic development, like severe emotional withdrawal are good, or just as good as effective and socially appropriate interpersonal skills. No one is suggesting that. It's more like saying your child isn't "sick" because her feet did not develop along typical patterns. Autism is the effect of neurological development in the same way your daughter's club feet are affected by her muscular and skeletal development. It's just that we can't easily identify neurological development as readily as we can an external condition like clubfoot. Neurology is one field of exploration we're really just embarking on so we don't know so many answers, but we are learning more and more. What I like about this blog is that the author advocates learning about autism through evidence rather than continuing to assume one's interpretation of their personal experience is indicative of a universal reality. One problem with relying on personal testimony rather than evidence is that it naturally inspires propagating false information which contributes to stereotypes. These are the kinds of things that are detrimental to the autistic community. I think the blogger's premise here is that there is no evidence to support the idea that autism is an pathology, and so talking about it as such is not only inaccurate, it distracts us from understanding it accurately and therefore being able to make positive headway. 

[Monica_in_Switzerland]

I think "sick" is a word we used to describe a temporary decrease in overall health.  I suppose this is a different category from chronic conditions or diseases. 

 

Pathological simply means relating to or caused by disease. 

 

Do you believe autism is not a disease? 

 

I disagree that we cannot recognize "health"- as in, this person has normal health/brain function/feet.  I do agree that we cannot point to an example.  This is like Plato's Forms.  The fact that no perfection exists on Earth does not mean we cannot conceptually grasp it.  It is like trying to grasp the idea of perfect justice, beauty, or what have you.  The fact that we cannot point to a perfect example does not mean we are incapable of fundamentally understanding these terms and applying them correctly in conversation. 

 

As we learn more about what causes autism, we might be better able to label it a (preventable or curable) disease, a genetic defect or malformation, or a chronic illness.  But I would say all of these qualify as pathology. 

 

Sorry, I've got to stop!  I woke up yesterday with a sinus infection, and the screen is killing my eyes!

[Plink]

I just re-read this for probably the 20th time, and my reaction is still the same. Her conclusion in particular ("Ultimately, to describe autism as a disorder represents a value judgement rather than a scientific fact.") makes me want to scream.

 

The author's writing style leads me to believe that she is probably an aspie who is frustrated by not being accepted socially. I have great sympathy for that, but her statement is not only condescending, but flat out wrong.

 

Autism at any level of the spectrum is disabling. There is no reason to pretend that it is not.

 

Wishing for greater acceptance will not change the fact that the disorder exists.

[Alexigail]

  I disagree with a lot of what is said here, starting with this:

What is needed is some good basic introductory “What Is Autism†text that is:

1.) consistent with current evidence;

2.) not based in the pathology paradigm;

3.) concise, simple, and accessible;

4.) formal enough for professional and academic use.

 

I can get on board with number one, and I guess number four if you want to be accurate.  I can understand the argument behind number 3, although this isn't generally a requirement for scientific descriptions.  However, number 2 is not consistent with a scientific approach. It's an assumption before the fact. This is what the writer wants to see, but not necessarily what is backed by research.  WHY do we need a description that is "not based in the pathology paradigm"?  Because some people with autism don't like the terminology used to describe them?  Where is the evidence that the view of autism as a pathology is false?
 The autism diagnosis itself is based on the presence or absence of symptoms, in this case displayed behaviors.  Already we're sunk because this tells us very little about what is happening in the brain - what is causing the behavior.  This is why so many kids receive several diagnoses in a row or (in my son's case) at once.  My point is that there isn't really any agreement yet on what autism actually is, so demanding people adhere to one list of criteria seems premature.