I want to start out by clarifying my vantage point and why I read this book with great interest. When I heard an interview with Temple Grandin on the brain science podcast about this book and how she emphasized the great neglect of sensory issues in both research and treatment of autism I hád to read it. I am not autistic but I sure as hell do know what it is to have sensory brain issues. The only genetic predisposition I had was a tendency to be long sighted. That and flawed vision screenings performed by surgery-happy eye doctors made for abnormal sensory brain development. So I was wondering what would happen to you if you did in fact have a more serious genetic predisposition for abnormal brain development and it wasn't just induced by medical negligence and malpractice. This book didn't disappoint in providing me with some answers. In addition, I even feel like I can add some useful information on visual sensory problems which was not mentioned in the book.
The book starts out with three fundamental questions about the autistic brain. How does a brain get to be autistic? What does an autistic brain look like? How does it function?
1. How does a brain get to be autistic?
Being both a scientist and autistic, Temple Grandin does not spare us any details. After showing us the latest developments in 'autistic genetics' she concludes there problably is no such thing as an autistic gene. Definitely there is a significant genetic origin but there is no such thing as thé autistic gene. Moreover it's not very clear what role environment plays in molding the genotype into the phenotype, that is the selection and expression of certain genes into the real-life person. The genetics of autism, it seems, is increasingly becoming a quagmire. There is not one obvious cause, but multiple causes.
2. So what does an autistic brain look like? Because of her status as relatively famous autism advocate Temple Grandin has had access to all types of brain scans. The 'traditional' fMRI (fucntional magnetic resonance), DTI (Defusion Tensor Imaging) and even a new method that is not available to the public yet called HDFT (High Definition Fiber Tracking) which provides hyper-detailed brain imaging. We take a look at what these imaging techniques revealed about her brain. She explains how the images of her brain anatomy relate to her own behavior, deficits and strengths. But what does this teach us about autism? Where does the autism end and the individuality of her brain start? What is the trademark of an autistic brain? This question leaves us with some 'inconvenient' truths about autism.
-Homogeneity of brain structures: In general autistic brains look quite normal anatomically. For about 95% of the comparisons with the control subjects the differences were negligible. This overwhelming normalcy in the autistic brain is the rule, not the exception. Autistic brains are not broken brains but they did develop differently.
- Hetereogeneity of causes: Even when researchers do think they’ve found a match between an
autistic person’s behavior and an anomaly in the brain, they can’t be sure that someone else
manifesting the same behavior would have the same anomaly.
- Hetereogeneity of behaviors: Conversely, when researchers find an anomaly in the brain, they can’t
be sure that that anomaly will have the same behavioral effect in a different brain.
These findings have important implications for how we view and certainly how we diagnose autism. Thanks to advances in neuroscience and genetics, we can begin a new phase in the history of autism, an era that returns to the search for a cause, but this time with three big differences.
"One, the search for the cause involves not the mind (psychology) but the brain (neurology)—not some phantom refrigerator mom (as one of the first autism researchers stated was the cause of autism) but observable neurological and genetic evidence.
Two, because we realize how extraordinarily complex the brain is, we know this search will lead not to a cause but to causes.
Three, we need to be looking for a cause or multiple causes not of autism but of each symptom along the whole spectrum."
If you only take away one thing from this book it should be this: don't get hung up on labels or diagnoses. Diagnoses have their practical uses but never lose focus of the actual biology. "I beg you do not allow a child or an adult to become defined by a DSM (Diagnostic and statistical manual of mental disorders) label." She argues that instead of looking to give psychiatry a neuroscientific basis, they even seem to move away from that goal. "To me, the DSM-5 sounds like diagnosis by committee. It’s a bunch of doctors sitting around a conference table arguing about insurance codes. Thanks to label-locked thinking, we now have a cornucopia of diagnoses—and there simply aren’t enough brain systems for all these names." Let’s not group people together by diagnosis. Forget about the diagnosis which essentially is a construct of the human mind too blunt to capture the complexity of every individual case. Forget about labels. Focus on the symptom.
"My friend Walter Schneider, who developed high-definition fiber tracking at the University of Pittsburgh, is already making that argument—probably because he has so vividly seen for himself the potential of this approach.
“We are searching for actionable diagnosis,” he says. “Not just that we say, ‘Yeah, you’re different,’ but, ‘You are different and because of this particular form of difference, we think this is the most likely path for getting you to as much of the outcome as we want you to get.’ We want to go in and in on that individual brain—not a group study but an individual brain—so we can say to a parent, ‘This is what the situation is, this is what we expect the effect to be, and this is how we plan to get around it as efficiently as possible to give you effective communication with your child in the next two years.’
It may well be that ASD (Autism spectrum disorder) and schizophrenia will increasingly be thought of in a similar light”—different behaviors arising from the same genetic source. As a result, Šestan and State anticipated that treatment trials would be organized around “shared mechanisms” rather than “psychiatric diagnostic categories.” They didn’t doubt that this rethinking of the autistic brain would be challenging. But like Schneider, they foresaw the development of therapies that were not only more effective but “more personalized.”
Twenty years from now, I think we’re going to look back on a lot of this diagnostic stuff (based on behavior) and say, “That was garbage.” So as I see it, we have a choice. We can wait twenty years and several more editions of the DSM before we start to clean up this mess. Or we can take advantage of the technological resources that are beginning to become available and start a new phase right now."
3. How does the autistic brain function?
An important aspect of how our brain functions and how we interact with the world are our senses. Sensory problems may make it impossible for some individuals on the autism spectrum to participate in normal family activities, much less get jobs. A lot of research has been done on the social aspects of autism but sensory problems have largely been ignored.
'For all the research on the autistic brain that neuroscientists and geneticists are conducting, for all the breakthroughs they’re achieving, the subject of sensory problems is clearly not a priority. Sensory problems in people with autism are “ubiquitous,” as a 2011 review article in Pediatric Research put it, yet the topic receives disproportionately little attention. Much of the research I found about sensory problems in autistics comes from nonautism journals, and many of those journals are not published in the United States. Even the articles on sensory problems in the autistic population that do appear in autism journals often go out of their way to bemoan the sorry state of research. “There is concern over the lack of systematical empirical research into sensory behaviors in ASD and confusion over the description and classification of sensory symptoms,” wrote the authors of one 2009 study, while the authors of another study that same year complained of a “dearth of information.” In 2011, I contributed an article to a big scholarly book on autism. More than fourteen hundred pages. Eighty-one articles in all. Guess what. The only paper that addressed sensory problems was mine.
Over the decades, I’ve seen hundreds if not thousands of research papers on whether autistics have theory of mind—the ability to imagine oneself looking at the world from someone else’s point of view and have an appropriate emotional response. But I’ve seen far, far fewer studies on sensory problems—probably because they would require researchers to imagine themselves looking at the world through an autistic person’s jumble of neuron misfires. You could say they lack theory of brain.
I suspect that they simply don’t understand the urgency of the problem. They can’t imagine a world where scratchy clothes make you feel as if you’re on fire, or where a siren sounds “like someone is drilling a hole into my skull,” as one autistic person described it. Most researchers can’t imagine living a life in which every novel situation, threatening or not, is fueled by an adrenaline rush, as one study indicates is the case in many people with autism. Because most researchers are normal human beings, they’re social creatures, so from their point of view, worrying about how to socialize autistics makes sense. Which it does, up to a point. But how can you socialize people who can’t tolerate the environment where they’re supposed to be social—who can’t practice recognizing the emotional meanings of facial expressions in social settings because they can’t go into a restaurant? Like other researchers, autism investigators want to solve the problems causing the most damage, but I don’t think they appreciate just how much damage sensory sensitivity can cause.
I’ve talked to researchers who even say that the sensory problems aren’t real. Hard to believe, I know. They call themselves strict behaviorists. I call them biology deniers. I tell them to consider this possibility: “Maybe that kid is freaking out in the middle of Walmart because he feels like he’s inside a speaker at a rock concert. Wouldn’t you be freaking out if you were inside a speaker at a rock concert?” I’ve had researchers then ask me, “If the kid is screaming because he’s sensitive to sounds, then shouldn’t that sound be bothering him?” Not if he’s sensitive to only certain kinds of sounds. Sometimes those particular sounds don’t even need to be loud in order to be annoying.
And not every person who suffers from a sensory disorder suffers to the same degree. I've learned to live with the sound of hands under air dryers or door alarms in airports. For some people, though, the sensory problems are debilitating. They can't function in normal environments like offices and restaurants. Pain and confusion defines their lives.
Whatever form these sensory problems take, they're real, they're common, and they require attention. I’ve given them that attention—and what I’ve found has surprised me, shocked me, and even led me to question some of the basic assumptions about autism itself."
I think it is also important to realize that sensory problems are not exclusive to autistics, although they are much more prevalent among them. Even I, a non autistic person with environmentally induced sensory problems, can identify with all the bold parts in this excerpt. I still believe people never helped me because they don't have a clue and not because they are evil, although sometimes you really feel like they don't give a crap about the truth. It's like they just want to pretend to help you so they can salve their conscience however poor the result of their actions. My genetic predisposition for sensory problems was nil. I just had some longsightedness. Flawed testing procedures ignored that and let it develop into full blown strabismus on top of which they inflicted more physical trauma by performing eye muscle surgery. I was a very social kid but increasingly I was less able to tolerate my environment which is now keeping me from functioning normally. So you might say now I have a need for 'solitude and sameness', a need often associated with autism, despite my adventurous character simply because of my induced sensory problems. I suspect this is a great hurdle for low functioning autistics too. What if it just takes heroic amounts of energy to do anything because of abnormal brain wiring? These experiences reinforce the idea of looking at biology and dealing with symptoms and not with labels or, in the case of strabismus, with cosmetics. Autistics are on the far end of a spectrum but we are all part of the spectrum. Depending on the person they might be on the far end of various spectra making them low rather than high functioning. When it comes to visual sensory problems I too am on the far end of that spectrum.
Based on autistic self-reports and books written by low functioning autistics she organically developed the concepts of 'acting self' and 'thinking self'. Even while not being autistic, but having a sensory problem, I can identify with these concepts. I feel there is a certain disconnect between what I want/think and what my vision and my body can deliver. Various self reports by non-verbal autistics who have written their testimonials by typing or other means often show how normal their thought process is. A new book by a non-verbal autistic Japanese teenager called 'The reason I jump' (check it out) only reaffirms this thought. Another telling example is this news report on an autistic girl named Carly. I too sometimes feel like I'm locked in and can only escape by relearning how to use my eyes with great effort and time but I can only try to imagine how it must be if the divide between the 'thinking self' and the 'acting self' is even greater.
Sensory problems in autistics can manifest as sensory seeking, sensory over-responsiveness and sensory under-responsiveness. Sensory seekers can't get enough of a certain sensation and will keep looking for that sensation as she herself demonstrated with her squeeze machine as can be seen in the movie based on her life. The two other categories are much harder to distinguish based on observation. A slow reaction (under-responsiveness) might be caused by being overwhelmed by a certain sensory sensation (over-responsiveness). So that's where self reports come in as essential pieces or research material. I myself can certainly identify with visually being overwhelmed causing me to react slowly sometimes. She uses the analogy of being in a foreign language environment: you are overwhelmed by all the sounds which you are trying to decipher making you slow in your reaction (if any). Some anti-social behaviors might simply be caused by sensory over-stimulation or under-stimulation. You can be researching 'the social structures' of the brain to death, if you have a sensory problem that is impeding you from functioning it won't yield any results. Apparently the research community just doesn't get it... Or they are willingly suppressing the research that already has been done. That is not unusual either, when it comes to vision research at least.
Sensory problems can include taste sensitivity, olfactory sensitivity, tactile sensitivity, auditory processing problems and visual processing problems. She has done her homework and met many people who are affected by all kinds of sensory problems and provides advise on how to deal with them based on their accounts. Of course, I myself have most experience with visual processing problems. With her visual tract that is 400% the size of normal visual brain wiring she experiences few visual problems. 'My visual processing is, if anything, superior to others, though I don’t know whether that’s due to how my eyes work or to how my brain interprets the signals that my eyes send.' I suspect that is why her advice for these kind of visually impaired folks is kind of meager. She repeatedly mentions colored Irlen lenses to alleviate visual stress while reading. Sure, it seems to work for some people and who am I to argue but for many people that isn't enough. Coincidentally this week I read another piece of research stating: Another binocular vision related topic discussed in reading
impairment literature is Irlen coloured filters for “scotopic
sensitivity syndrome”. These custom-tinted lenses are
proposed to result in higher levels of efficiency when reading.
Schiemann et al. , however, have shown that the
majority (approximately 95%) of such Irlen cases potentially
have unresolved binocular vision and refractive anomalies.
Given the significant overlap in symptoms between the
two conditions (including double vision and headaches), the
authors expressed concern that binocular vision dysfunction
issues were being under-detected, and concluded that although
all Irlen centres require a normal result from a
routine eye examination prior to referral, routine exams
may not necessarily include a cycloplegic examination or
accommodative and/or vergence testing .
So I say: Get that kid, autistic or non-autistic, a comprehensive vision exam and if needed into Vision Therapy! Irlen lenses will help some people but it will not work for people with more serious vision problems who are most in need of visual brain training! It's kind of surprising Temple Grandin didn't make the connection as she endorsed 'Fixing My Gaze' on its cover by saying 'Essential reading for people interested in the brain'. So she knows about the existence of VT.
In general, the way she advises to deal with sensory problems or other brain deficits for that matter is similar to the ones I have read about earlier (Vision Therapy, Fast ForWord by Michael Merzenich, Arrowsmith program,...): slow things down, bring the task to a level the person can successfully execute so they can learn and accumulate a higher skill level. Find the comfort zone boundary and gradually redefine it. A lot of neuroplastic therapies (vision therapy, speech therapy, ...) can make a huge difference.
Even though the visual advice was rather incomplete because of her own superior visual skills I agreed with her rational of approaching symptoms on a brain-by-brain basis. It also reaffirmed many of my frustrations that currently most people, including health care professionals, have no idea what they are doing. She ends this section of the book by reiterating the need for new research priorities when it comes to autism: a diagnoses based on biology and looking into sensory problems. Reading that I couldn't help but thinking "or just acknowledging what many 'alternative' health care providers such as developmental optometrists already know instead of willfully suppressing the research".
Looking for strengths
Without downplaying the suffering and problems associated with autism this book ends on a positive note. Autistics have many strengths and even if we could completely 'solve' autism it would come at a great cost. Too much of a trait causes disability but a little bit can provide an advantage. We need autistic brains around. Notable strengths are bottom up thinking, associative thinking and creative thinking. I'm sure the list is not exhaustive either. In addition the concept of different kinds of thinking (verbal thinking, object visualizers, spatial visualizers) is illustrated by intriguing examples and proposed as a way of helping people find their strengths.
A lot of very useful practical advise for parents following the idea 'focus on strengths, accommodate deficits' is also provided. Technology and notably tablets open up a whole new world of opportunities and learning.
'This generation is fortunate in an important way. They're the tablet generation - the touchscreen, create-anything generation. I've already talked about how these devices are an improvement over previous computers because the keyboard is right on the screen; autistic viewers don't have to move their eyes to see the result of their typing. But tablets also have other advantages for the autistic population....' (Again, can't help thinking 'get those kids in VT to help them improve their eye movements')
Indulge interests and obsessions through technology but she also urges parents to try teach a minimum of social skill which will be important in order to find employment later on. If you are interested or in need of this sort of practical tips, please don't be satisfied with this trimmed down version and buy the book! It's well worth the read for anyone interested in autism or the brain in general.