Autism – Myths, Misconceptions, the Science, the Upside and the Future

*In searching YouTube for revelant video clips for the resources section at the end of this post, it is painfully obvious to me why Autism has such a bad rap in the general populace, because for the most part you only hear about really severe, low-functioning cases, which are the ones that often strongly resemble mental retardation. This is part of why it is SO crucial to understand the condition better, and why I feel this is one of the most important posts on this site. [Update: I recently found a post that makes a good case for not thinking in terms of high or low functioning, you can read that here]

Very recently I finished reading “The Autistic Brain: Thinking Across the Spectrum” by Dr. Temple Grandin, a famous Autistic person who has revolutionized the animal care industry, thanks in part to her Autism.

This is one of the best books I’ve ever read, both in the range of information and topics it covers, but also in that it spoke to me personally and potentially gave me answers for some of my own experiences. I think anyone who is on the spectrum or suspects they are, should absolutely read it. This blog entry is going to be LONG (and largely a recap of the book), but I really hope you will take the time to read the whole thing and I will strongly recommend you buy and read the book yourself as there is so much information I can’t cover here.

Chapters in the book include:
1. The Meanings of Autism (history)
2. Lighting Up the Autistic Brain (brain scans/neurology)
3. Sequencing the Autistic Brain (looking for genetic links and causes)
4. Hiding and Seeking (sensory)
5. Looking Past the Labels (focus on the symptoms, not the label)
6. Knowing Your Own Strengths
7. Rethinking in Pictures (corrections from her prior book)
8. From the Margins to the Mainstream (moving forward into the future of living with Autism)
Appendix – “Autism Quotient” self-test.

I know I had heard about Autism in passing while growing up, but I never knew anything about it (or at least I would have fallen in the “Autism=rain man” camp). In 2010, I stumbled upon a thing called Asperger’s Syndrome, and the more I read about it, the more I related and identified and felt like “this explains so many things about me”. Funny enough, I brought it up to a friend at the time, I asked her “have you ever heard of a thing called Asperger’s Syndrome?” and without missing a beat she replied “yes and I bet you have it”. I had literally only just stumbled onto it, and she had been observing me and had identified that I was like her partner in many ways (her partner at the time was an “Aspie” as well) so it was no surprise to her.

I continued to read, research and ponder the subject, getting a range of responses from friends and family (as I would quote them descriptions of it or things I read) from “I don’t think so” to “yeah that makes a lot of sense”. It was really frustrating because I really felt like the shoe fit, but our society largely holds a negative attitude towards people self-diagnosing, which I can understand in some cases. But I wasn’t seeking any kind of advantage or special treatment, I just wanted to know if this was the answer I thought it was. Finally, in 2012 I was able to get referred to a psychologist who assessed me and determined that I had “very mild” Aspergers and was “clearly high functioning”. The first thing I did when I got out of that meeting was text one of my friends (who also suspects she is on spectrum) and said “I’m officially a statistic!”. Because I try not to take myself too seriously.

Funny enough, from that point to very recently, I didn’t promote it much. There’s a lot of stigma and bad information out there, and even since being formally diagnosed, some people still don’t believe me, largely because I’ve refined my social skills to such a high point from what they used to be. But being really good at acting “normal” doesn’t mean you are normal, just that you’re a good actor. Even though there are proven advantages (some might even call them super powers in a way), I’ve been largely advised against mentioning it in job interviews as a strength. I’ve mostly kept it under my hat and only told certain people.

Now that I’ve read this book, I don’t feel the need to do that anymore, because I have a MUCH better understanding of what it is, what it means, and how to work with it. The correct science of understanding it is in its infancy, but the future looks very bright.

So this post will be largely a recap of the book, but I will also talk about my personal experiences. I may also update this post in the future if I realize I’ve forgotten to mention anything or include any resources. So, let’s learn!

First off, the definition of Autism, from WikiPedia:

Autism is a disorder of neural development characterized by impaired social interaction and verbal and non-verbal communication, and by restricted, repetitive or stereotyped behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.

Autism is currently diagnosed by a psychiatrist, based on observing behaviours, but Temple argues throughout the book that Autism is most definitely a neurological (ie *brain*) issue, not a psychological (ie *mind*) issue. She argues that psychological diagnoses are highly unreliable (this is supported by the numbers of how many people previously diagnosed as mentally retarded were later re-diagnosed as Autistic once the criteria had changed). She also shares a story about how in 1973, a group of psychiatrists performed an experiment where they successfully convinced the staff of a mental health facility into believing they were schizophrenic, and had to have colleagues later come and convince those same people that the experimenters were NOT schizophrenic so they could be discharged. In other words, diagnosing mental illness based on observation, even for the experienced doctors, is not reliable.

Temple also stresses that Autism is a range (hence the name Autism Spectrum Disorder), which ranges from low-functioning (which can be mistaken for mental retardation), where the person is unable to speak or even adequately take care of themselves, right up to the “high functioning” end of the scale, where names like Albert Einstein, Steve Jobs and Mark Zuckerberg (among others) get thrown around. One of the biggest misconceptions about Autism seems to be that if you’re autistic, you’re like Rain Man. That’s not everyone on the spectrum, in fact I would say that is mid-spectrum. Many of my friends and even family members have doubted me largely due to my (now highly refined) social skills.

She addresses the so called “Autism epidemic” that some have claimed and breaks down the numbers, explaining that when you account for the people formerly diagnosed as mentally retarded who were re-diagnosed as Autistic, and you add in the people who now fit under the Asperger’s Syndrome label who may have just been diagnosed with a social anxiety disorder, you can account for the increase in diagnoses. Again, psychology is not a perfect science so the numbers have changed as the DSM and diagnostic methods and criteria have changed. In case you have ANY doubts – NO Autism is NOT caused by vaccines. That report has been disproven and the doctor behind it has been discredited:

It all started with bad science. The now-debunked theory that autism is caused by the common immunizations nearly all children receive beginning in infancy began with a fabricated piece of research, a 1998 study published—and later retracted—in the journal Lancet. In 2010, Great Britain stripped Andrew Wakefield, the lead author of the study, of his medical license. An investigation had deemed his research an elaborate fraud.

Temple mentions how through brain scans, she has discovered that she has a larger than average Amygdala. While this is not true of all Autistics (but of some), this helps explain her high level of anxiety in the world, both social and otherwise, as the Amygdala is the emotional center of the brain. Basically, with an enlarged Amygdala, her emotional responses are highly amplified compared to a “normal” sized Amygdala:

Since I started taking antidepressants, in the early 1908s, the anxiety has been under control, probably because the pounding sympathetic nervous system reaction is blocked. But the vigilance is still present, percolating under the surface. My fear system is always on the alert for danger. If the students who live near me are talking in the parking lot under my window at night, I can’t sleep. I actually turn on New Age music to block out the sound, even if the students are talking softly (though the music can’t have vocals.) Volume has nothing to do with the fear factor; the association with a possible threat does. Human voices are associated with a possible threat. New Age music isn’t associated with a possible threat. For that matter, neither is the sound of an airplane, that sound doesn’t bother me, even when I’m in a hotel by the airport. A plane could land on the hotel and I wouldn’t wake up. But people talking in the next room? Forget it. I might as well turn on the light and read, because I know I’m not going to go to sleep until *they* do.

The problem is, what’s in *my* autistic brain is not necessarily what’s in someone’s else’s autistic brain. As the neuroanatomy pioneer Margarat Bauman once told me, “Just because your amygdala is larger than normal doesn’t mean that every autistic person’s amygdala is larger than normal”. While similarities among autistic brains have emerged, we have to be careful not to overgeneralize.

“Even when you look at a child who has no language, who is self-injuring, who’s had multiple seizures, you would be amazed at how normal their brains look. It’s the most inconvenient truth about this condition” – Thomas Insel, Director of the National Institute of Mental Health.

Personally, I *like* knowing that my high level of anxiety might be related to having an enlarged anygdala. That knowledge is important to me. It helps me keep the anxiety in perspective. I can remind myself that the problem isn’t *out there* – the students in the parking lot under my bedroom window. The problem is *in here* – the way I’m wired. I can medicate for the anxiety somewhat, but I can’t make it go away. So long as I have to live with it, I can at least do so secure in the knowledge that the threat isn’t real. The *feeling* of the threat is real – and that’s a huge difference.

She points out that “no two autistic brains are exactly the same”, so it’s not as simple as identifying which brain regions are different and in what way, however, through new technologies being developed, scientists are moving towards being able to better diagnose and treat neurological issues through brain scanning, which will allow for more accurate and reliable diagnoses that don’t rely on behavioural analysis.

People with Autism and Aspergers are known for not making eye contact, and Temple provides a really interesting explanation through the aid of science:

In the neurotypical brain, the right tempororparietal junction (TPJ) was active to direct gaze, while in the autistic subject, the TPJ was active to averted gaze. Researchers think that the TPJ is associated with social tasks that include judgements of others’ mental states. The study found the opposite pattern in the left dorsolateral prefrontal cortex: in neurotypicals, activation to averted gaze; in autistics, activation to direct gaze. So it’s not that autistics don’t respond to eye contact, it’s that their response is the opposite of neurotypicals.

What a neurotypical person feels when someone won’t make eye contact might be what a person with autism feels when someone *does* make eye contact.

The way Temple sees it, and I certainly agree, this move towards diagnoses through brain scans to pinpoint the problem rather than apply a vague and confusing (and stigmatizing) label, is a very positive move. As she puts it, it goes from “I’m weird/broken”, to “this part of my brain is different and that’s why I’m different, but that’s not inherently bad”. And obviously if a biological diagnosis is able to be zeroed in on through brain scans, this will aid in earlier detection for those affected, and as Temple puts it “greatly impact the positive trajectory of someone’s life”.

The technology that is currently aiming to help solve this goal is called HDFT (High Definition Fiber Tracking), which came about from the Department of Defense asking “we need something that does for brain injury what x-rays do for orthopedic injuries”. ie, we know what a broken bone looks like and how to fix it. We don’t know what a broken brain looks like, thus we can’t fix it nearly as effectively. As an example of this technology in action:

The paper reported on the case of a thirty two year old male who had sustained a severe brain injury in an all-terrain vehicle accident. (No, he wasn’t wearing a helmet.) HDFT scans revealed the presence and location of fiber loss so precisely that the research team accurately predicted the nature of the lasting motor deficit – severe left-hand weakness – “when other standard clinical modalities did not.”

This technology even shows if a damaged circuit still has function or if it is completely out of order. This way you can fix exactly what is wrong, vs throwing the whole thing away like a piece of food that has been dropped on the ground.

One of the other problems with diagnosing Autism and Aspergers, as alluded to before, is that it’s based on behavioural observation. Autism shares many traits and behaviours with other conditions so it’s harder to pinpoint what the person really has. Researchers are searching for genetic links as well, and the book talks about one gene (DRD4, 7R version) that could potentially play a role:

People with these gene variations are simply more sensitive to their environments – “for better or worse,” as one research said. You could think of them as “orchid children,” because they easily flourish or wilt depending on whether the hothouse environment they inhabit is conducive to growth or not. By contrast, “dandelion children,” who carry the regular version of the gene, fare just about the same no matter where they grow.

One of the biggest issues for people with Autism are their sensory issues, yet Temple writes about how poorly they’ve been researched and studied, and that even many behavioural researchers don’t even believe the sensory issues are real (Temple calls them “biology deniers”). She also writes about how there is even a lot of misunderstanding around the nature of the sensory issues – i.e. for someone with auditory sensitivity, some researchers don’t understand why noises they cause themselves (such as screaming fits) don’t bother them as well, and Temple helps to clarify that it is only certain stimuli, and there are differing degrees of sensitivity. For myself personally, when I am tired, I am very sensitive to sound. I often wear earplugs at work just to stabilize the sound pressure I experience. When I’m tired and having a stressful day, even normal every day noise can quickly overwhelm me and give me a migraine. I also have issues with tight clothing (I hate feeling physically restricted), and there are many foods I won’t eat because of the texture, or if they have really strong tastes or smells.

Next she writes about the difference between sensory seeking and sensory over or under-responsiveness. Some people actively seek stimulus (babbling, hand flapping, rocking), while others either totally shy away from it, or don’t notice it unless there’s a lot of it. That helps explain why some people on the spectrum behave in very socially inappropriate ways while others seem catatonic.

She also writes about how in new environments, many people on the spectrum are simply overwhelmed because our brains take in a lot more information about our surroundings than so called “Neurotypical” people. We aren’t always able to block out the intrusive and unnecessary stimuli, and so we get overwhelmed and may be very slow to respond as our brains try to frantically sift through it all. I know for myself personally it’s always hard for me to go to a new public venue for the first time because I have to take everything in at first and figure out what stuff to block out or try to ignore. In moisy environments (like a sports bar) I have a really hard time and often bring earplugs just in case, but it can be almost impossible to take part in a conversation in these situations. I also tend to worry if I’m sitting near a doorway or high traffic walkway (have to constantly be aware of people passing close or myself being in the way), also if I’m going to be squished or cramped into a small space. I don’t even do it on purpose, my brain just scans all these things to be aware. Needless to say, I’m not a big fan of bars or dance clubs.

The thing with stimulus is though, and Temple talks about this herself, is if we are able to *control* it ourselves, it’s much easier to handle. I can enjoy really loud music, when I know what to expect (and can choose when and if to turn it down or off). But when loud pounding music is turned on and I have no control over it, it gives me a headache very quickly (especially with deep bass). Part of my trouble getting to sleep is that my brain will analyze any little sound, no matter what it is. It’s hard to ignore, whether a vacuum, someone chopping vegetables, a radio, even a ticking clock (I have all digital clocks in my apartment). If I can’t control the sound, it tends to be distracting, unless I can focus intently enough on something else to block it out (this is how I manage to work at my day job). It has been a challenge lately because I sit between two people and they often talk to each other through me. It takes a lot of energy to try and ignore it.

Getting back to the book, temple writes about another commonly held stereotype that people on the spectrum can’t read or understand facial expressions, but she cites the results of a study done that showed that we in fact can, they just have to be slowed down a bit, and once we know what we’re looking for, we’re often better at reading them in reality.

She also talks about something that I had never heard of before which is quite interesting. It’s called Scotopic Sensitivity Syndrome (or Irlen Syndrome, named after the woman who discovered it), and the way it manifests is that words tend to “jiggle” on the page or screen you are looking at, making it hard to read and write, and this can be fairly easily counter-acted by either wearing colour-tinted glasses, or by printing notes or writing notes on pastel coloured paper, basically anything other than stark black and white. Temple writes about how one girl was able to use this trick (pink tinted sunglasses) to go from being able to handle just a few minutes in a Walmart, to handling a full hour of the environment without getting overwhelmed. This is why I’ve become more and more reliant on earplugs, they do help, even though they make it harder to hear and understand what people are saying sometimes.

There is essentially an entire chapter (“Hiding and Seeking”) in the book that talks about sensory sensitivity and sensory processing issues. There are so many things I want to quote from this chapter, but I can’t really pick one thing because you kind of need all of it for complete context. But she talks about both high and low functioning people on the spectrum and how they self-report experiencing sensory input. This section of the book is probably the best for understanding the “socially inappropriate” behaviour of many autistic people. Temple laments the fact that there is precious little research into sensory issues, and that what research data exists is largely gathered from a 2nd or 3rd party, and as such is largely unreliable. But more and more non-verbal autistics are now being able to write and communicate about their experiences through the aid of touch screen devices, giving us insight into the most severe sensory experiences.

Also, for example, for an Autistic person who can’t speak (non-verbal), they can’t communicate what’s wrong with them, if their stomach hurts or something. If you try to imagine having cramps or a really bad headache and someone is dragging you out to a mall or a loud crowded venue of some sort, and you feel this way and you can’t tell anyone to get help, it’s easy to imagine why you might have a “meltdown”. When Carly Fleishmann (a non-verbal Autist person) got her hands on a touch screen for the first time to type her own messages, one of the first things she wrote was “HELP TEETH HURT”. She could point to her mouth, but it could easily be misinterpreted as signaling hunger.

Another point Temple makes in the book is how when you’re over-sensitive to external stimulus (for example, physical touch), something like a hug from a family member or friend can be too much, and as such Temple resisted hugs from her mother as a child because it overwhelmed her nervous system. It’s not that she didn’t want to be hugged, it was just the physical equivalent of blowing an airhorn in her ear. She couldn’t handle it.

Thankfully, Temple has a section of this chapter specifically devoted to describing how to identify if you or someone else has a given type of sensory processing sensitivity (visual, auditory, touch/tactile, olfactory/taste), and practical tips for coping (some of which we tend to figure out on our own, like my earplugs). If you pick up the book, this runs from page 94 to 98.

Another tip/aid that Temple writes about, specifically for non-verbal ASD children, is to use musical tones and rhythms to help them learn to talk.

Catherine Y. Wan, of the Music and Neuroimaging Laboratory in the Department of Neurology at Harvard Medical School – not only hoped for specialized treatments but went on to help create one. It’s called auditory-motor mapping training (AMMT), and it is designed to promote speech production directly by training subjects to experience the relationship between speaking at different pitches while tapping tuned electronic drum pads. “The therapist introduces the target words or phrases by simultaneously intoning the words and tapping the drums tuned to the same pitches,” Wan write in the proof of concept study published in 2011. The paper reported that after having forty-five-minute individual sessions five times a week over an eight-week period, the six non-verbal children in the study, ages five to nine, showed “significant improvements in their ability to articulate words and phrases, with generalization to items that were not practiced during therapy sessions”

And also on the topic of speech and hearing issues, Temple mentions that as a child, she personally had trouble hearing consonants, which in part made it difficult for her to learn to speak which kept her non-verbal for longer. So if you have difficulty with understanding what people are saying, or if your child seems to be struggling with speech, this is something to consider. Speech therapy might be helpful.

People on the spectrum are often said to be clumsy, physically awkward, not particularly graceful. Temple offers and potential explanation here as well (and challenges the 10,000 hour rule). She says how through brain scans, she found that she has a smaller than average Cerebellum, which has a significant role in motor control. She describes how despite hours and hours of practicing, she has always been terrible at skiing, whereas she has seen people try it for the first time and do far better than her with very little instruction or practice. She speculates that, as with her Amygdala, that in her case, and likely that of other people on the spectrum, that a smaller cerebellum can lead to motor deficits.

I have never considered myself especially clumsy, in fact I often think I am better physically coordinated than average. I do often fumble things with my hands when I try to do something too quickly, but I don’t know if that’s mainly due to the speed. I have never had my brain scanned, but I am really interested to if I can find a way without having to pay out the wazoo. Again, Temple writes She writes “The difference is important. It’s the difference between a diagnosis and a cause.” she finds comfort in knowing her clumsiness is due to a specific part of her brain, shared by some but not necessarily all other people with Autism. As her mother put it, “different, not less”.

Next she spends some time talking about her experiences giving lectures about Autism at schools, and the questions and comments she gets afterwards. She writes that many people (including parents) say things to her like “my kid is weird, what should I do?” and she says “give me an example, something specific”. She says forget about the label, tell me the symptom or behaviour and then she can make suggestions.

Again, she gives some advice that I heartily agree with – the first and most important thing that people on the spectrum need to work on is the verbal and social skills. If you can’t get those up to a certain point, you won’t be able to hold down a job as an adult which will severely limit your opportunities. She explains in the book how her mother forced her to go run errands, which often saw her returning home crying, but successful, and eventually she got better and got comfortable with it. I was still very shy and socially awkward into my mid 20s. It wasn’t until I moved to the big city and started going out more that I was forced to get better at talking to people. Fortunately Toronto has a lot of casual, low pressure meetups you can go to, where you don’t have to give a speech or a dissertation. Over the course of a few years, I got better and better, and am proud to say that I’ve gotten so confident in my speaking abilities that I’m actively pursuing opportunities for public speaking. I have a strong sense of social justice (among other forms of rights and equality), and I don’t want to sit back if I can do something to maybe change the world in a small, positive way. I think Temple feels largely the same (she has afterall revolutionized the animal welfare industry and is a big advocate there, I just started reading another book of hers – Animals Make Us Human). A few years ago I had a job in a call center and it was easily the hardest and most stressful job of my life (I didn’t last more than a few months before nearly having daily panic attacks). Even now, with my social skills where they are, the last thing I want to do is call strangers on the phone to either try to sell them something, or get them to do a survey, or even offer tech support (I did all three of those things). But I love discussion groups and giving presentations where I can share information and ideas (like I do on this blog) and have a dialogue. But Temple is absolutely right, I’ve seen co-workers who are painfully shy, and it’s so clear to me that they are never going to progress or evolve in their role, because they can’t talk or take initiative. I’ve been fortunate to be able to work through it to get to this point and I don’t want to waste it.

Another interesting perspective she offers, in regards to the criticisms leveled at people who “self-diagnose”, is this:

“In scientific circles,” a 2011 article in Nature reported, “many accept that certain autistic traits – social difficulties, narrow interests, problems with communication – form a continuum across the general population with autism at one exteme.”

In other words, you don’t have to have an autism spectrum disorder diagnosis to be “on the spectrum.”

Interestingly, John Robison (another famous person with Autism, and author of several books), said something very similar at a talk he gave a few years ago in Toronto (I was in attendance, but this was before being formally diagnosed). He commented to the effect that “you just know” if the shoe fits you. This makes perfect sense to me, much like Autism shares traits with other conditions, many people have some of the same traits and behaviours, just not amplified to the same level. This is probably part of why some people are suspected of being Autistic or Aspergers, even if they aren’t showing obvious signs. If you read the section (Page 94-98) about sensory sensitivities, you may even find yourself relating to one or several things mentioned, even if you don’t have any other signs of Autism.

One of my cousins is strongly believed to be on the spectrum by my Aunt (his mother), however he wants nothing to do with the label. I on the other hand sought it out. I suspect a friend of mine is on the spectrum, but he also doesn’t want to be associated with it. I can understand why some people see it as a negative due to the social stigmas and myths, but to me it’s a positive, as I feel a bit like I have some super powers (with a few weaknesses to match).

Temple writes about “label locked thinking”, where many people either get the label and give up, or people in the diagnostic field who give the label and write the person off as a result. She warns against falling into a “handicapped” mentality where you think you’ll never be able to do anything so why even try. I’ve seen perfectly able-bodied and able-minded people give up like this, they either set their standards too high or get stuck in a rut and see no way out. I really hate seeing that because I believe everyone has potential and want to see them use as much of it as they can. She re-iterates, focus on the symptom, not the label.

Temple goes on to talk about her issues with the DSM, how imperfect it is, and how she actually believes each new version is arguably a step backwards rather than forwards. She really believes that we should be seeking biological diagnoses rather than psychological ones. The technology may not exist in all cases yet, but when it does, it will likely be far more accurate and reliable. She also makes a comment of:

The APA says that those already diagnosed with autism will keep the diagnosis. But what about the previously undiagnosed Aspies who meet only the social half of the new dyad criteria – deficits in social communication and interaction but not in repetitive behaviors and fixed interests? They could find themselves in another subcategory altogether: communication disorder. Specifically, they’ll find themselves receiving a diagnosis that’s new to the DSM: social communication disorder, which is, basically, autism without the repetitive behaviors and fixated interests. Which is, basically, rubbish. (To my way of thinking, social impairments are the very core of autism – more so than the repetitive behaviors.) So having a diagnosis of social impairment that’s distinct from the diagnosis of autism is the same as having a diagnosis of autism that’s distinct from the diagnosis of autism!

Here is another passage which really jumped out at me:

Second, these diagnoses overlook the gifted but frustrated – the typical aspie or high functioning autistic who is laboring in a non-sympathetic environment. Consider the oppositional defiant disorder diagnosis: “The disturbance in behavior causes clinically significant impairment in social, educational, or vocational activities.” I guarantee you that if you take a third grader who can read high school math texts and make him do baby-math drills over and over, he will turn oppositional defiant – because he’s bored out of his mind. How do I know? Because I’ve seen these cases – kids who are considered to have severe behavior problems at school until you give them math lessons that meet them where their brains are. Then their behavior normalizes, and they become productive and engaged – maybe even model students.

Again, she promotes a biological diagnostic method vs a psychological/behavioral one:

I once had a graduate student who saw wavy lines between the curved lines in a drawing of a cattle chute, and sometimes she saw only pieces of words. She wasn’t autistic, but these symptoms were notably similar to those described by Donna Williams, who definitely is autistic.

I say, Throw ’em both in a scanner and see what lights up. Let’s see where the problem is. Is it in the language-output? Language meaning?

Let’s take the people who can’t ride on an escalator because they can’t figure out how to get on and off. Or let’s take the people who hate driving at night. Let’s take those subgroups and put them against controls who don’t have that problem.

Let’s throw them both in a scanner and compare them, motor cortex to motor cortex.

Walter Schneider, who developed HDFT, says “We are searching for actionable diagnosis”

Next she writes about IQ tests for Autistic people, and how 2 tests are commonly issued (Weschler Intelligence Scale and Raven’s Progressive Matrices), but since one of them relies much more on verbal skills, ASD people tend to perform worse on that (Weschler) and better on Raven’s, since Raven’s is largely pattern focused. This helps explain why people on spectrum are often highly intelligent, but may not always score in gifted or genius range on IQ tests. I have not personally formally taken an IQ test, just ones online, and I fall just shy of the gifted range, but I’ve been told not to put any weight into that since it is a free internet IQ test.

Another myth/misconception – Temple writes that only about 10% of autistics are savants, though most savants are Autistic.

Temple writes that Autistic people are bottom up thinkers – details first, whereas Neurotypicals tend to be more top down thinkers (big picture first). Having been called overly particular, finicky, picky and perfectionistic many times over the years, I’d say I’m definitely a details person. She says that Autistic people are more “pure pattern” focused, whereas Neurotypicals are “social pattern” focused. As an example, one study showed that Autistic people preferred to sort photographs of people by the type of hat they wore, vs by their facial expression.

Temple writes about thinking patterns, that while the thought process of someone on spectrum might seem random, we’re just selecting a file folder to explore. I know I’m an intuitive thinker and my trains of thoughts are often very tangenty. She then goes on to give an analogy that I strongly identify with:

 

I’ve often said that my brain works like a search engine. If you ask me to think about a certain topic, my brain will generate a lot of hits. It can also easily make connections that will get off the original topic pretty fast and go pretty far. The similarity between my brain and a search engine, though, shouldn’t come as too much of a surprise. Who do you think designed the original search engines? Very likely it was people whose brains work like mine – people with brains that have trouble with linear thought, brains that ramble, brains that have weak short-term memory.

Still, in order for a search engine to come up with hits, the database needs to be full of information to hit upon. In human terms, it needs memories.

Autistic people are also less likely to misremember data.

I think bottom up creative thinkers like myself are more likely to have creative breakthroughs just because we don’t know where we’re going. We accumulate details without knowing what they mean and without necessarily attaching emotional significance to them. We seek connections among them without knowing where they’re taking us. We hope those associations will lead us to the big picture – the forest – but we don’t know where we will be until we arrive there. We expect surprises”

Temple identifies herself as a visual thinker (hence the title of her previous book, “Thinking In Pictures”), I consider myself the same, though maybe not to the same extent, but based on what she writes I do identify. But she does point out that not even all visual thinkers think the same way, by giving an example – Autistic artist Jessica Park, who does art that Temple says would have never occurred to her. Temple writes that if someone gives her a “verbal description” of something, she can’t “see” it. As soon as I read that I went “me too!”. I even find that when someone is verbally giving me instructions or directions, I don’t always absorb them well, but if they write them down or type them and print it out, that helps a LOT. Somehow, being able to look at the words written down allows me to remember them much more easily and I can process the information much faster. I have also found that while listening to podcasts, that if they are talking about or describing something that I’m not familiar with, I get a really bland, foggy image in my mind of what I think it might look like, but if I go look up a picture, it’s almost as if I can create a movie in my mind based off that. If they are describing things I’m familiar with I have no trouble visualizing.

Here is an extremely interesting bit where she writes about how many artists are actually tuned into patterns in the natural world well before the science world has even found them:

The composers, of course, don’t think of their compositions in these terms. They’re not thinking about math. They’re thinking about music. But somehow, they are working their way toward a pattern that is mathematically sound, which is another way of saying that it’s universal. The math doesn’t even have to exist yet. When scholars study classical music, they find that a composer such as Chopin wrote music that incorporated forms of higher-dimensional geometry that hadn’t yet been discovered. The same is true in visual arts.

Even the seemingly random splashes of paint that Jackson Pollock dripped onto his canvases show that he had an intuitive sense of patterns in nature. In the 1990s, an Australian physicist, Richard Taylor, found that the paintings followed the mathematics of fractal geometry – a series of identical patterns at different scales, like nesting Russian dolls. The paintings date from the 1940s and 1950s. Fractal geometry dates from the 1970s. That same physicist discovered that he could even tell the difference between a genuine Pollock and a forgery by examining the work for fractal patterns.

I have seemingly always enjoyed music with atypical syncopations. I’m particularly fond of so called “progressive metal” and one subgenre known as “Djent” (which is typically very spastik and off-beat). I don’t know what the underlying patterns are but I feel like they connect with me.

She explains how there are 2 types of visual thinkers – spatial (pattern) and object (picture). She is an object thinker, whereas artists like Van Gogh, Jackson Pollock, and Jessica Park are spatial thinkers. I definitely find patterns fascinating and can get easily transfixed on them, but I think I may be more of an object thinker. She shares an anecdote about how her writing partner asked her to picture a fence in her mind:

 

“A fence?” I said. “What kind of fence? For what? A cattle fence? A fence alongside a highway? A privacy fence at a house? Barbed wire fences? Picket fences? … These were all coming up as pictures in my mind. “There is no *fence*.”

Picture thinkers want to create objects that match what they see in their imagination, whereas pattern thinkers think about the ways the parts of the object fit together.

She writes “I see like an artist but I don’t FEEL like an artist”, and that “scientists use unemotional words to describe paintings”. Further:

I don’t attach an emotional response to concrete objects. So I am able to handle them objectively – literally as objects, and only as objects. I can’t manipulate them in space. I can’t subject them to spacial reasoning. But I can sure design a cattle chute that works.

And finally:

A pattern thinker, however, would see the patterns a lot earlier. That’s what makes pattern thinkers good at math and music: They GET the form behind the function.

It’s also important for schools to let math whizzes do math in their own style. If they can do math in their heads, don’t tell them “You have to show your work” Let them do it in their heads.

You’ll know who these word-fact thinkers are because they’ll tell you. They’ll recite all the dialogue from a movie. They’ll rattle off endless statistics about baseball. They’ll calmly recall all the important dates in the history of the Iberian Peninsula. Their math skills will be only average, they won’t bother with the Legos and building blocks, and they won’t be all that interested in drawing. In fact, there might well be little point in forcing them to sit through art class.

Next she writes about how studies have shown that even in blind people, their visual cortex is still being used for similar tasks as it would if they could see:

Over the years, scientists have used PET scans and fMRI scanners and MRI machines to study the visual cortex (which covers 30 to 40 percent of the brain’s cortical surface) of subjects who have been blind since birth. They have found that even though the blind person’s visual cortex had never received any visual stimulation, it was nonetheless being used. In effect, it had been repurposed to perform the blind equivalent of visual tasks such as reading (braille), localizing sounds,  interpreting body language, and so on.

She comments about how some parents or teachers think that when a kid is different they should be forced into the same mold as all the other kids, and Temple argues that their difference needs to be embraced and fostered. She makes a very strong case throughout the book for focusing on strengths vs the current popular model of trying to provide support for deficits. She honestly makes me want to become an advocate for Autism.

She describes the way she has to deal with learning something that is not a strongsuit of hers:

I‘d get five textbooks, sit down with a tutor and a spreadsheet, identify specific examples of problems that use one formula and specific examples of problems that use another formula, and eventually I would recognize the patterns in the problems.

That is very similar to how I learn – especially when I was learning Spanish. I was trying to find commonalities, patterns that I could remember and fall back on vs trying to memorize everything individually. Being aware of my learning and thinking styles I think is a large part of what allowed me to learn so fast and make as much progress as I did in just 4 months of dedicated study.

She makes a great point about why you should NOT just let a kid on the spectrum sit and obsess over one thing all the time (besides the fact that they’ll never develop social skills), she writes “kids are not going to get interested in things they don’t come into contact with”. She says that her coming into contact with  cattle happened by chance, but it sparked a love that formed her career. She also explains how you can use their interests as a teaching tool – if they like trains, teach them reading with trains, teach them math with trains.

She writes about thinking styles, identifying “word-fact” thinkers who can memorize and recite facts and data. She says many people on spectrum are word-fact thinkers, and while typically ideal jobs for them (clerical, filing, record-keeping) are being replaced by computers, she suggests to have the computer become the word-fact thinker’s friend and use it to their advantage. I think this is something I figured out on my own, fortunately for me. I would consider myself largely a word-fact thinker, it can make learning a bit challenging when information is not presented in a linear or logical order. When I was a teenager I memorized lots of useless information – I memorized the tracklistings (and song lengths) of every album I owned. I would memorize NHL team rosters, player numbers and lineups.

I’ve even noticed that if you show me a set of information but don’t tell me “that’s not all of it yet”, I assume it is and formulate a structure for that information in my mind, and then when you present new related information, I have to re-organize the structure and figure out where to fit it in. But if you tell me there’s a whole structure in the first place, even if you don’t give me all of the information, I will mentally “leave room” for it, where I think it makes sense to go, and then I don’t have to break down a structure and rebuild it.

She gets back to the emotion stuff again, saying that managing emotions requires top down control from the frontal cortex, which seems to be a problem for a lot of people on spectrum. She writes “If you can’t control your emotion, you have to CHANGE your emotion. If you want to keep a job, you have to learn how to turn anger into frustration”

She concludes with this advice:

By cultivating the autistic mind on a brain-by-brain, strength-by-strength basis, we can reconceive autistic teens and adults in jobs and internships not as charity cases but as valuable, even essential, contributors to society.

And finishes the book with lists of ideal job for different thinking types, as well as an unofficial self-test for Autism Quotient (AQ). I took the test and with my current answers, scored just within the range (33 out of 50, 32 is the lower limit for the test) of what they say makes sense for Autism (again, this is by no means an official diagnostic test but can give you an idea). When I re-answered remembering what I was like about 10 years ago, my score went up by 8 pts (or nearly 1/5th of the total possible score). So that tells me that I have made a lot of headway in overcoming some of the common difficulties I struggled with before.

I had a very easy time reading this book (to say it was engrossing would be an understatement!) because Temple’s way of thinking is very much like mine, so it was easy for me to follow her thoughts and absorb the information the way it was presented. Again, I can’t recommend this book enough, whether you think you’re on spectrum or not, the insights and understanding that come from this are huge. It’s not a heavily scientific book by any stretch, but there’s plenty of facts and scientific backup for the points. Please purchase a copy. I have read both of John Robison’s books (since I was turned onto him first), and I enjoyed this book far more because there was actual science (biological and neurological). I might say that I felt John’s books are more experiential, like “here’s what I went through and how I dealt with it”. I think Temple takes a huge step here in really trying to zero in on the true root of things, and not just give a bunch of ideas for how to cope. I’m really glad that an actual biologist with Autism tackled this topic.

Resources!

www.TempleGrandin.com – Author of several books, both about Autism and about Animal biology, psychology and behaviour
www.JohnRobison.com – Author of “Be Different: Tales of a Free-Range Aspergian” and “Look Me in the Eye”
www.CarlysVoice.com – Carly Fleishmann’s book “Breaking Through Autism”
www.twitter.com/carlysvoice
www.facebook.com/carlysvoice

The Brain Science Podcast – Episode 98 – A review of The Autistic Brain (this is where I first heard about the book and found this review to be very captivating and so I had to get the book and read it myself)
The Brain Science Podcast – Episode 99 – An interview with Temple Grandin specifically about the book and the points she makes in it. I recommend listening to both, but if you listen to this without having read the book, you will still get some good information.
www.WrongPlanet.net – Online Autism Community
The Boy Whose Brain Could Unlock Autism – MATTER Article on Medium
“Don’t Call Me A Person With Autism” – Yes, That Too
Why You Should Not Support Autism Speaks

YouTube:

(In searching YouTube for revelant video clips, it is painfully obvious to me why Autism has such a bad rap in the general populace, because for the most part you only hear about really severe, low-functioning cases, which are the ones that often strongly resemble mental retardation. This is part of why it is SO crucial to understand the condition better)

“Temple Grandin” Biopic Film Trailer:

“Adam” Official Movie Trailer (fictional story about a man with Aspergers Syndrome):

Temple Grandin TED Talk “The World Needs All Kinds of Minds:

Temple Grandin Presentation “My Experience with Autism”:

Temple Grandin on “The Hour with George Stroumboulopoulos”:

Carly Fleishmann describes her experience on The Doctors:

Carly Fleishmann – The extreme sensory experience of an Autistic person:

What it is like for an person with ASD to walk down the street (sensory overload):

Sensory Overload at a Mall:

Technology Helps People with Autism to Communicate:

Tito Mukhopadhyay:

Tito’s journey:

A Mother’s Courage: Talking Back to Autism

Care to share your thoughts?