Episodes
Friday Mar 13, 2020
Advocate's Insider: The Separation of Cognition from Autism
Friday Mar 13, 2020
Friday Mar 13, 2020
Introduction
Welcome to Advocate's Insider, an online publication of KPS4Parents. KPS4Parents is a non-profit special education and disability resource organization. My name is Anne Zachry, and I'm our organization's CEO, as well as the host of this patron podcast. I have been a special education and disability resource lay advocate since 1991, a paralegal to attorneys representing individuals with disabilities since 2005, and an educational psychologist and behavior analyst since 2013.
Advocate's Insider is a patron-only program intended to assist special education and disability resource advocates around the United States develop their advocacy skills and increase their chances of achieving appropriate outcomes for the individuals with disabilities whose rights they work to protect. The content published on Advocate's Insider is based on my own experiences and those of my colleagues regarding special education and disability resource advocacy in the public sector.
None of the content on Advocate's Insider should be considered as formal legal advice. If you require formal legal advice, please seek the counsel of a qualified attorney.
If you are a parent, educator, or activist looking to improve your knowledge and approaches to advocating for individuals with disabilities from a technical standpoint, then Advocate's Insider is an appropriate resource for you. Professional and volunteer advocates alike can always stand to improve their skills, and we seek to add to the body of resources available in this unique, specialized field.
Patron proceeds generated by Advocate's Insider are used to support our public education efforts via social media. Your patronage is genuinely appreciated and is used to help individuals with disabilities and their families throughout the United States through education and technical assistance.
If you are listening to this podcast, please be aware that there is a text-only transcript on the PodBean post for this podcast that includes hyperlinks to online resources that can serve as additional useful information. Whenever such a resource comes up in the course of the podcast, you'll hear a sound like a bell that cues you to where in the transcript you can find each link.
Today is March 13, 2020
This is Volume 1, Episode 3
The title of today's episode is, "The Separation of Cognition from Autism."
I recently had to testify in a special education due process hearing for one of my former students who has autism and severe speech/language delays. One of the arguments that the involved school district was trying to make was that my student's cognition was so low that his parents' expectations of what he could achieve in school were unrealistic and that they were just in denial about how intellectually disabled he really was.
The argument the school district was asserting was, and still is, disgusting because the school district's lawyer was attempting to twist scientific data to mean something it didn't, primarily with respect to cognition, in order to paint an inaccurate picture of a nonverbal child who lacked the means to contradict her. She was literally taking advantage of the fact that he was voiceless to misrepresent his situation to the judge.
The district's lawyer was making a technically weak argument and, if the judge realized what she was doing, it's only going to end up making her look pathetic on the record. Hopefully, my testimony was helpful in shutting her down. The hearing has only just recently ended and the decision hasn't come out, yet, so how helpful my testimony has been remains to be seen.
Nonetheless, it got me to thinking about an issue that has come up more than once over the course of my career. It's one I've seen other experts, one mentor in particular, address on rare occasions in IEP meetings or from the witness stand, but I don't really hear people talking about it that much, otherwise.
This is a topic about which advocates should have a more robust knowledge to apply in the field. That realization has been informed by a previous realization that most people working for public education agencies often understand the nuances of this topic even less than parents, advocates, and attorneys, which was a point driven home once more in another case that I'm working right now for another autistic student who is nonverbal.
Pretty much most stakeholders in special education fail to understand the relationship between autism and cognition, to the degree it's currently understood. As advocates, it's our job to, among other things, promote the application of evidence-based practices supported by peer-reviewed research in the design and delivery of special education. It's what the IDEA requires and what professional ethics demand.
We can't promote what we don't know. What we do know is that the folks at the school districts usually don't know this stuff, either. That puts it on us as advocates to basically provide professional development services to the school district folks in the course of advocating for our students.
It is so much easier to resolve things for a kid if you can spoon feed the correct answers to the district and just ask them to do it, than to expect the district to figure out a decent plan on its own, sometimes. It shouldn't be that way, but it is. Before I became an educational psychologist, I had to ask for school districts to provide things I knew they didn't know how to provide and them sue them for not delivering. That forced them to hire experts that they should have hired in the first place, but at a cost several times greater than it would have cost if they had just hired experts in the first place.
It's gotten much easier for me over time because, now, I'm the expert and I can just call it like I see it. I've pursued the education necessary to understand how to take all the multidisciplinary data and weave them together to accurately describe a student as an individual learner and create individualized programming around those identified needs.
I have also gained experience and pursued additional training to inform my knowledge of the legal requirements of special education, having provided paralegal support to attorneys in due process cases, federal district court appeals, and federal circuit court appeals. The only place I haven't provided paralegal support in a special education matter is the U.S. Supreme Court.
I realize I come at advocacy from a fairly unique perspective, but if you can develop your own advocacy skills enough to work in a similar fashion, even if you have to rely on other people who are experts to support your arguments, you can be equally effective. You just need to know enough of what the experts know to ask them the right questions so that everyone understands their explanations. If you're sitting in an IEP meeting with an expert, that's the best time to ask a million questions. Chances are, other people wanted to ask them, too, but were afraid to ask or didn't know how to quite formulate their questions to get at what they wanted to know.
Public education is institutionally biased from the outset and will allocate resources according to its own convenience rather than student need without realizing it. A school district is large enough of an institution to exist for its own benefit, in which students are the means to perpetuating the district. A lot of people become financially dependent on keeping the school district going such that it serves their financial purposes more than it serves those for whom it was created to serve.
I have seen few aspects of special education in which the science is so far disconnected from actual practice that it results in systemic failures harming a specific class of individuals, as I have with the measurement and interpretation of standardized, norm-referenced IQ tests as part of special education assessments. I have several hypotheses as to why such is the case, but for now I want to focus on the fact that this simply is the case, regardless of why, and we need to deal with it. Way too many people in special education have no idea how to use IQ scores in a scientifically valid way to drive IEP decisions.
It is the kids with autism, particularly those with comorbid speech/language delays, who can really get super screwed by this. This accounts for a whole lot of students for whom we all advocate, so I want to talk about the peer-reviewed research regarding what is known to date about cognition and autism, as well as the federal requirements for special education assessment, in this patron-only exclusive podcast.
First, it has to be understood that autism and cognition both occur in the brain, but they are two separate things. Autism does not automatically result in disabling cognitive impairment, but it does impact cognition, sometimes in spectacular ways. It's not a question of whether autism has an impact on how someone thinks; it's a question of how it impacts the ways each person who has it thinks on an individual, case-by-case basis.
Which gets me to a much subtler nuance of this issue: the grey-white matter junction. I'll try to sum this up as simply as possible because this is a complex area of neurological functioning and the details matter. First you have to understand what a neuron is and how it functions. Bear with me, those of you who already know this as I recap for those who don't.
A neuron is a nerve cell, any kind of nerve cell, and there are an unspeakable number of them throughout any human body. Neurons don't all look alike, but they have all the same kinds of parts that work in the same ways. The "torso" and "brain" of a neuron, if you will, makes up the main cell body and includes the nucleus. Sticking off of it in one direction are branches called dendrites that receive chemical signals from its neighboring neurons. Sticking off in the opposite direction are other types of branches called axons that carry outgoing messages to their tips, called axon terminal buttons, that, based on the messages being sent, release chemicals into the surrounding area to be picked up by the dendrites of its neighbors.
Neurons communicate with each other by releasing chemical messages and picking them up from each other. Neurons work together in nerve bundles and require each other in order to function. It's a naturally occuring gestalt in which the whole is truly greater than the sum of its parts.
The grey-white matter junction of the brain is a space in which the axons of neuron bodies and dendrites located at the outermost edge of the grey matter of the brain reach out into and become part of the white matter of the brain. The grey-white matter junction is made up of specialized neurons that serve as the transition from the grey matter to the white matter. Cognition occurs in the grey matter, utilizing data passing through the white matter combined with pre-existing knowledge archived primarily in the grey matter.
There aren't grey matter neurons and white matter neurons separated by a clean barrier that must be permeated. There are actual specialized nerve cells that are half grey and half white that bridge the transition. It is in this transition that autism is believed to occur.
In autistic individuals who have participated in neurological imaging studies, it has been observed that the grey-white matter junction is not as distinct as it is in typically developing individuals. It has also been observed that individuals with the genetic markers for autism have atypical proliferation, migration, and maturation of neurons, which appears to be happening in the subplates of the grey-white matter junctions of individuals with autism. (https://link.springer.com/article/10.1186/s13229-018-0232-6)
The point, here, is that cognition does not occur in the grey-white matter junction where autism occurs. The grey-white matter junction is the link between the parts of the brain that control the body and the parts of the brain that actually think. The grey matter can be perfectly intact but influenced by white matter differences that rise to the level of defects if severe enough.
When the autism becomes severe enough, cognition may be still technically intact but functionally inaccessible, such that the individual functions as though cognition is impaired. This is one reason why trying to assess for cognition in individuals with autism can be so difficult.
The complexity of it all is immense and I'm totally over-simplifying it here, but hopefully you get the basic idea that in neurotypical individuals, there is a more gradual transition between the grey and white matter than there is in autistic individuals. The gap between autistics and neurotypicals with respect to grey-white matter junction differences is widest in childhood and can close to varying degrees depending on the individual over the course of developmental maturation.
The narrowing of that gap in autistic individuals for whom grey-white matter junction differences present difficult, but not insurmountable, challenges can be facilitated through appropriately targeted instruction and therapies. The ability to accurately process incoming data and output in a manner that is effective in the immediate environment is highly sophisticated and the neurological resources that are necessary to make it happen for any individual are substantial.
When a person's neurology is such that the environment cannot be easily understood and/or the person is unable to act upon it in an effective manner, the person's very survival is threatened. At that point, what is otherwise just a difference in neurology becomes a disability. Disability occurs in degrees of severity and, because no two brains are alike, how such neurological defects manifest in one brain will differ from how they manifest in others.
Further, not all brain differences are impairments. Some are improvements. It is commonly known that, in general, individuals with autism often have strengths in visual-spatial processing. Studies are finding that autistic individuals often have areas of processing that are enhanced by atypical neuron proliferation, migration, and maturation. This is supported by research using magnetic resonance imaging (MRI) to examine the parts of the brain processing fluid intelligence tasks on both autistic and neurotypical individuals. (https://onlinelibrary.wiley.com/doi/full/10.1002/hbm.24074)
If you've ever seen the movie, Temple Grandin, about the autistic PhD professor, animal husbandry expert, and world-renowned public speaker by the same name, the visual processing aspects of how she thinks is wonderfully illustrated through computer animation. Dr. Grandin has authored a number of books about living with autism, one of them titled, Thinking in Pictures: My Life with Autism, which describes Dr. Grandin's enhanced visual-spatial skills and experiences using them to navigate life, including excel at professional endeavors, while still dealing with the challenges of autism.
I met Dr. Grandin once at an event in which she was the keynote speaker and as totally autistic as she was, she was also totally confident and in control of her situation. I was impressed by her strength of character and ability to not just survive, build something amazing for herself and the rest of the world through her work using her highly unique brain to her advantage, and in a time with both women and people with neurological differences were generally exploited, abused, and neglected by society. She rather stood the Patriarchy on its ear just by being herself.
One of my favorite quotes from Jiddu Krishnamurthi is, "It's no measure of health to be well adjusted to a profoundly sick society." I think of it every time I think of trail blazers like Dr. Grandin and, now, Greta Thunberg. Greta refers to her autism as a superpower. She is able to focus on climate change as a topic by way of autistic perseverative thought and ignore harassment by way of autistic pragmatic language differences. Being oblivious to social cues makes it easier to ignore haters and afford little weight to what they have to say. If all they have is emotional hyperbole that makes no logical sense, and they can't rebut her with facts, she has no reason to take them seriously.
The tendency towards being literal, which is very common among autistics, also comes with a tendency to not lie or see benefit in lying. As such, autistics aren't very good at engaging in denial when they encounter a problem that needs to be solved. They become singularly focused on solving it, if they have the necessary skills, or they perseveratively worry about it if they don't have the skills to solve it.
At its most fundamental level, if you want to compare the human brain to a computer, the grey matter that makes up the cerebral cortex is a bunch of processors connected together and connected to and integrated with input and output devices by way of the white matter. The white matter routes and conveys incoming data from the sensory organs to various processing centers of the cerebral cortex, internally shared data among the processing centers of the cerebral cortex, and output data from the cerebral cortex driving communication and behavior to act upon the environment. Where the grey matter is made up of the processors, the white matter is the cabling and routers that connect the processors up to each other and to the sensory organs, and route data into, out of, and among the processors.
This is why we see so many autistic children with sensory processing differences, sometimes to a such a marked degree that they become sensory-avoidant and/or sensory-seeking in a way that interferes with living safely. The connectivity between auditory processing, language processing, speech production, reading, and written output goes all over the cerebral cortex, involving multiple processing centers. They rely on the white matter to convey their communications between and among each other. When the grey-white matter junction is compromised, they are challenged to do so. For some autistic learners, reading with comprehension can be an enormous challenge.
Unlike processing disorders, which generally occur in specific processing centers of the cerebral cortex, the processing centers can be perfectly intact in an autistic brain but unable to communicate effectively with other processing centers because of white matter differences that rise to the level of defects. There is an argument being made these days by the autistic community that their increasing numbers reflect that our species is trying to evolve a more rational and responsible version of itself, hence the Dr. Grandins an Greta Thunbergs out there.
Evolution involves a great deal of trial and error. If the argument being asserted by many in the autism community is true that their contribution to neurodiversity reflects an evolutionary leap that is currently in progress for our species, then the sheer breadth of the autism spectrum makes sense. Nature is indifferent and cruel in many ways. According to this theory, in an effort to achieve an improved version of ourselves, we are creating many new humans who are severely impaired rather than enhanced or are otherwise trapped in nervous systems that prevent them from communicating just how intact they otherwise are on the inside.
It's a spectrum disorder, so there is every degree of severity possible, the most extreme of which is disabling. For those individuals who are relatively only gently kissed by autism and their cognitive hardware is sufficient for accurately reading the environment and acting upon it, their autism is as Greta says: a superpower. These are the individuals with autism who are most likely to pass on their genetic material and contribute to humanity's evolution into a more rational, responsible version of itself than it has been to date.
Greta points out the very things that make her autistic and how they work to her advantage. She is also not without a sense of humor and the ability to throw shade. She's become famous for adopting language from a Tweet by President Trump in which he disparaged her as her profile description on Twitter, effectively mocking him with his own words. It was brilliant dry wit.
Greta is literally the child pointing out that the Emperor is wearing no clothes. And, she's describing his Imperial Junk in no uncertain terms, just to be clear that we're all looking at the same thing. She's singularly focused, as any hero on an issue this big would have to be. She's not impressed by flattery. She has no motive or inclination to lie or sell out her cause.
Greta is unable to adhere to certain social norms, which are not healthy norms in the first place, so it gives her a social/emotional advantage over her neurotypical elders. She's not able to be suckered into a "keeping up with the Jones" mentality because it is immediately obvious to her for what it is, serves no useful purpose, is therefore stupid, and is automatically dismissed. It is counter to the outcome on which she is singularly focused, which is saving everybody, including the neurotypicals, from the consequences of the behaviors of the neurotypicals over the last century-and-a-half, which is destroying ecosystems and making the planet increasingly uninhabitable by our species in the long term.
Greta is a poor candidate for bribery. She is not well adjusted to a profoundly sick society, at all. Her literal way of interpreting everything cannot be appealed to with flowery compliments and gifts. She sees right through things like that. Social norms are largely about social manipulation, which is not something that comes naturally to many autistics. They may see how neurotypicals are behaving and understand what the social expectations are, but they may also fail to see logic in any of it, determine neurotypicals are primitive morons, and fail to take anything neurotypicals say very seriously.
Humans say "please" and "thank you" as social lubricant to get what we want and maintain our social relationships, in addition to as a matter of respect. That's easy enough to learn. But, many people also say things that are not true to get what they want; lie to themselves about things that matter as a method of avoiding dealing with their problems; project their fantasies onto other people rather than appreciate other people for who they each are; and a host of other things that a literal, honest, autistic mind simply cannot do.
The world needs minds like Dr. Grandin's and Greta's, who are unable to fall for a cockamamie story about golden threads being woven into a magic cloak for the Emperor that can only be seen by the competent. In the fable, no one could see this supposed cloak, but they didn't want to admit it because it could only supposedly be seen by people who were competent in their responsibilities and admitting not seeing it was presumably admitting incompetence.
A point driven home by this fable is that the Emperor and his subjects proved their incompetence by falling for the ruse rather than seeing right through it. They were willing to perpetuate a lie and facilitate a con job just to maintain the favorable opinions of others. They were also so dumb with fear that they were worried maybe the only reason they couldn't see the invisible cloak was because they really were incompetent and didn't want anyone to find out, lest they lose their positions and posts.
Self-deceit and self-doubt are very closely related. For this reason, autistic individuals perseveratively focused on a mission according to the facts and rules-based thinking are generally not likely to experience self-deceit or self-doubt. In a world in which maintaining appearances is more important than solving problems, the literal minds of autistics like Greta are incredulous at and stymied by the emotionally dysfunctional priorities of neurotypicals. Like small, but very well informed, children, autistics like Greta have never mastered the ability to engage in self-deceit and the facts speak for themselves, so concluding the Emperor is butt-naked is plainly obvious to them.
It is that difference in the grey-white matter junction between autistics and neurotypicals that alters how data flows into, out of, and among the processing centers of autistic brains from that of neurotypicals. No norm-referenced IQ test is designed for those conditions. As such, no norm-referenced IQ test is entirely reliable when it comes to measuring cognition among individuals with autism. In many cases, norm-referenced IQ tests cannot be relied upon at all, particularly among autistics who also have language delays.
IQ tests are meant to measure what happens in the grey matter. They aren't designed to measure for grey-white matter junction differences among autistics compared to neurotypicals. 34 CFR Sec. 300.304 is significant with respect to these considerations.
Norm-referenced IQ tests do not purport to measure grey-white matter junction functionality or language processing, but impairments in either or both can impact how an individual performs on a norm-referenced IQ test. In such instances, scores reflect the presence of autism and/or language impairment, which IQ tests do not purport to measure. When that happens, the scores cannot be used to describe intelligence because they describe something else.
Collectively, the regulations require that assessments be individualized to the student being assessed and that different kinds of tests be used to make sure the data is valid. There is also the provision for using adaptable testing methods rather than norm-referenced ones where possible, and that goes to what makes norm-referenced IQ tests so often inappropriate for use with autistic students.
Norm-referenced tests require every test-taker to take the measure under the same test conditions as every other test-taker in order for the scores to mean anything. The test-taker has to conform to standardized testing conditions. No modifications or accommodations are allowed. For many students, this prevents them from demonstrating what they actually know. They need accommodations in order for educators to get at their existing knowledge.
Criterion-referenced measures are more reliable in that regard and the regulations provide for these kinds of assessment tools. One such useful measure is the Southern California Ordinal Scales of Development (SCOSD).
There needs to be a great deal more professional development done among public school assessment personnel regarding the individualization of special education evaluations. In particular, there needs to be a tremendous amount of attention focused on how cognition is being measured and how the scores are being used to drive IEP decisions. If cognition is being underestimated on the basis of improper evaluations, then the student is being grossly educationally neglected.
Thank you for supporting our patron-only content and helping us benefit individuals with disabilities and their families throughout the United States. Please subscribe as a patron supporter to get automatic access to all the episodes of Advocate's Insider. If you have any questions about special education and disability resource advocacy, please email us at info@kps4parents.org or post a comment to this podcast.
All content is copyrighted by KPS4Parents, which reserves all rights.
Comments (0)
To leave or reply to comments, please download free Podbean or
No Comments
To leave or reply to comments,
please download free Podbean App.