Last week I went to the library, and since the kids distract me too much for any browsing, I just went to the psychology shelf and pulled off half a dozen books about autism. I figure it's time to do some serious research, because the information I get on the internet is pretty shallow.
I'd like to do a full review on every book I read, but I don't have that kind of time, so I thought I'd do a mini-review of each book and share some of my thoughts about what I read.
The first source isn't a book; it's a movie -- Temple Grandin. A friend lent me the DVD and I really enjoyed it. It's the story of how an autistic woman develops from a nonverbal child to a designer of livestock management systems. Dr. Grandin is very famous in autism circles as a success story -- you can watch some of her speeches online.
I loved how the movie showed you how Temple, who is extremely visual, sees and imagines the world -- by making normal things that frightened her look creepy, or by flashing quick images of the things she's imagining when other people talk to her.
What really gets me in the movie is what a fine balance Temple's parents and mentors have to walk -- neither failing to challenge her, nor letting her flounder. If her mother hadn't forced her to go to college, I doubt she'd ever have been able to achieve what she did. But on the other hand, if she hadn't insisted the college allow Temple to keep the "squeeze machine" she used to calm her sensory meltdowns, I doubt she could have succeeded at college. Always a fine line between allowing an autistic person to be themselves, and forcing them out of their comfort zone.
Next I read a book, Songs of the Gorilla Nation. The author has not only autism, but also synesthesia, an eidetic memory, and a masterful command of language, so that it's a lovely book from beginning to end. It tells her story, from running through her childhood home repeating words over and over, through a traumatic time in school, dropping out of high school, being homeless, and finally discovering her life's work studying gorillas. Only at 35, after experiencing difficulties in her longterm relationship, did she finally seek and obtain a diagnosis.
The author is clearly a person of deep emotions and aesthetics, and I found I identified strongly with her. Like me, she becomes attached to things of great beauty. And like Marko, she cannot bear for anything ever to change:
"My need for repetition extended to routes, places, and activities. When we went to the store, the cleaner, or the park, I would insist on going the same way every single time. I would silently acknowledge landmarks as the route unwound, whether they were the buildings and hills or the flowers and trees. I had memorized everything. To me, each flower, tree, building and hill was a person, a being with its own personality and sense of agency. If I did not see it, it missed me and felt abandoned. I would panic if we did not drive or walk by it, because it would think I didn't exist anymore and would be worried. In turn, I felt like I would disappear if I were not hemmed in by the familiar and unchanging.
I would feel like I was dying--my heart would pound, my ears would ring, and my whole consciousness would go hollow--if something changed. I remember instances of buildings being torn down, trees being cut, new roads going in, and two building fires happening along my routes. It took weeks for me to recover from these things. I would cry and yell and announce my convictions regarding the basic evil of mankind. I hated the changers and the changed. To me, change was nothing less than murder.
Oftentimes I would not accept these changes, and if we passed the site of a fallen tree or a new building, I would close my eyes and remember it the way it was until we had moved on to the safety of the sacred permanent. Sometimes I would have dreams about the buildings, trees, or fields that had disappeared, and in those dreams I would hug them and tell them how much I loved and missed them."
Marko cried for a couple of weeks recently over a lamp that had broken. At the time, I suggested that it was probably that he was upset over the new baby and couldn't verbalize it so he fixated on the lamp instead, but maybe I was wrong. Maybe he really was that attached to the lamp!
The book had a lot of highs and lows -- from the poignancy of her time on the streets, too shy to beg and reduced to digging food out of the trash, to the triumph when her son is born and she holds him in her arms for the first time. It's just a beautiful, beautiful book.
The next book I read was Neurotribes, on the recommendation of reader Sojourner. It's a history of autism, from the mad scientists of the time before autism was recognized, to its simultaneous discovery, on different sides of the Atlantic, by Leo Kanner and Hans Asperger, and beyond, to what we are learning today.`
The book attempts to prove, and I think successfully, that autism is not a new and scary epidemic, but a genetic condition that's always existed and which we're only now beginning to recognize the scope of. Rises in reported cases correspond closely with increased awareness and expanded diagnostic criteria.
The trouble with our early knowledge of autism is that Kanner and Asperger defined it very differently. Kanner, an American psychologist, said it was an extremely rare condition and his criteria for diagnosis were very strict. A child with real autism couldn't have "infantile schizophrenia" (a diagnosis at the time which has since disappeared into autism), or any other conditions like seizures (which now are known to affect a large percentage of autistic kids). He described the condition with eleven case studies, all of very severely affected children.
Asperger, on the other hand, worked at a children's school for special needs in Austria and had 200 different cases. He recognized that there was a continuum in the condition from nonverbal children all the way to verbal, quite intelligent kids he called "little professors." Unlike Kanner, he suggested the syndrome was "not at all rare." Unfortunately, Hitler came to power about then, and the school was shut down. Asperger's work didn't become widely known for decades.
Something both Kanner and Asperger noticed that the parents of autistic kids often seemed quiet, logical, cold, or closed-in. Kanner's explanation was that the coldness of the parents had wounded the child's developing psyche, causing him to develop autism -- the "refrigerator mother" hypothesis, which led to children being institutionalized to save them from their parents' toxic influence, as well as many parents avoiding diagnosis for their children for fear they would be blamed for it. For his part, Asperger believed that autism ran in families, which is what we now believe.
The double discovery resulted in a diagnostic separation at first -- "autism" referring to children with a language delay, social deficits, and repetitive behavior, and "Asperger's syndrome" referring to similar children without any language delay, as well as having high intelligence. In time, it became clear that Asperger's and autism weren't really as different as they appeared, and Asperger's was rolled into the autism diagnosis -- resulting, of course, in an apparent skyrocketing of the autism rate.
One thing that the book made clear to me is that the autism spectrum isn't a static thing -- where severely autistic kids will grow into severely autistic adults, while more mildly affected kids (those with what we used to call Asperger's) stay that way forever. Rather, some kids make massive leaps from completely nonverbal to being able to function and socialize normally, while others regress and lose skills they had previously had. This can cause a great deal of confusion about treatment, because children may make big leaps forward or backward seemingly at random and have it credited to a diet change, new supplement, or a vaccine. It's hard to say, at any given time, if gains should be credited to therapy or just to a child getting older.
The really striking bit dealt with the follow-ups from Kanner's original group of eleven severely autistic children. One served in the Navy and was married with kids. One graduated high school with top marks and an IQ of 150. One got a scholarship to study mathematical physics. One had gotten a degree in French and became a bank teller, after having been raised by foster parents who were "very fond of him" and "gently firm":
"As Asperger's team had done for their own patients, the Lewises had found ways for Donald to put his autistic intelligence to work, rather than treating his passions for counting and collecting as pathological obsessions inflicted on him by his parents. 'If one factor is significantly useful, it is a sympathetic and tolerant reception by the school,' Kanner concluded. 'Those of our children who have improved have been extended extraordinary consideration by their teachers.'"
On the other hand, some of the children were institutionalized and these did not improve. "[The children] who spent most of their lives in institutional care have lost all their luster early after their admission .... If at all responsive to psychological testing, their IQ's dropped down to figures usually referred to as low-grade moron or imbecile." This is despite all the children originally being at very similar levels of functioning when Kanner first described them.
It both frightened and reassured me -- frightened, because clearly autistic children are very vulnerable to the wrong environment; reassured, because none of these kids had any official "therapy," just the sort of flexible but demanding parenting we are always told kids need anyway.
Now I'm not entirely on board with everything in this book. For instance, the author insists that autism is mostly genetic, which twin studies do affirm, but he completely glosses over the fact that twin studies also show that it isn't entirely genetic. Perhaps 25% of cases may be caused by something in the environment. The author also makes it sound like autism is just great if only people are willing to adapt. He tells stories of autistic get-togethers where everyone gets along famously so long as the neurotypicals aren't around. And I know that autistic people don't always get along well with each other at all -- it really depends. It's true that the world could use to make more allowances for the autistic, but it is also true that autism is a disorder which makes life more difficult for the people who suffer from it. I appreciated a look at the "bright side" of autism -- the misunderstood geniuses, the kids whose families learned to accept them for who they are -- but it seemed just a bit too sunshine-and-rainbows.
That said, I think I can get on board with the notion that autism, and the traits that play into it, might have value in our society. Temple Grandin said that if you could have wiped out from the human gene pool every autistic gene, mankind would still be socializing in caves, without any of the monomaniacal geniuses who could have invented fire. Autistic people, and nerds with some autistic traits, may be the key to developing new technologies -- people whose true happiness is in their obsessions, who can spend a lifetime working on one single thing.
Next I read Temple Grandin's book The Autistic Brain. This dug into a lot of what I most wanted to know, which is what exactly autism is, and how it feels to be autistic. How can I empathize with my child if I don't know what's going on in his head? He isn't always very good about communicating that stuff to me.
I found it a super cool book, discussing not only information obtained from brain scans, but also genetics and self-reports of autistic individuals. Finally something that actually addressed what autism is rather than a list of behaviors observed from the outside -- because I know about the latter already!
The brains of autistic people tend to be unbalanced, with some areas of the brain overdeveloped and others undeveloped. Grandin shares scans of her own brain, which has small language centers and a massive visual-processing area -- unsurprising, given that she was a late talker and thinks in pictures. But she's careful to point out that not all autistic people have brains like hers. While it's characteristic of the autistic brain to be exceptional in some areas and underdeveloped in others, which areas are which vary from person to person.
One commonality, though, is that autistic people have larger amygdalas. The amygdala is the part of the brain that processes emotion, especially fear. This is why autistic people so commonly suffer from anxiety. Another interesting thing (not actually mentioned in this book, but I'm putting it here because I can't remember now where I read it) is that the autistic brain does not become used to things in the same way. For instance, if I hear the same joke a second time, I don't find it funny, and if I hear the same phrase said ten times, I get tired of it and wish it would stop. Autistic people don't have this happen, for whatever reason -- when they watch a beloved movie, even though they know what will happen, they can enjoy it just as much. And, of course, Marko loves to say the same thing over, and over, and over, and OVER. Drives me insane.
Like autistic brains, autistic genes aren't all the same. There are any number of genes which might be associated with autism, but in a sample of a hundred autistic people, there may be only two or three people with any specific shared mutation. That makes it difficult to find out which genes are actually causing autism. It's almost certainly more than one in each person -- that is, there must be alterations in several different parts of the genetic code for a person to develop autism. I read an interesting study awhile back showing that parents of autistic children often showed "autism cluster traits" -- that is, they had some traits associated with autism, but not others. For instance, the father might be extremely rigid while the mother suffered from language difficulties. More study in this direction would be extremely interesting and possibly shed light on why autism develops in such a predictable pattern even with such different genes -- and why some of family members of autistics don't have autism. What exactly does separate a nerd from his autistic sibling, and why don't we have a word for the thing the nerd has?
Both the brain chapter and the gene chapter got me thinking about the possibility that autism is really just an umbrella term. It's extremely common because we're lumping in so many totally different things in the same diagnosis, based on a list of common traits. Perhaps one day parents receiving their child's diagnosis will hear something like this: "Johnny has mutation A on his B gene, an enlarged C region and a small D region in his brain, and behaviors E, F, and G. This means he has autism type 5, which has prognosis H and will respond best to treatment I." But we are nowhere even remotely close to this right now.
[Note: some autistic people really do not like research being done on autism genetics because they worry the only use of this research is going to be prenatal testing and eugentic abortion. I think that's a very valid concern, but at the same time I think we'll never understand what autism IS, and what plays into it, without looking at the genes.]
Grandin spends a whole chapter talking about sensory issues, which she says are underemphasized in autism research and therapy. Doctors focus on behaviors, without realizing that totally different behaviors (e.g. melting down and shutting down) might come from the same internal experience of overstimulation. Some autistic people have difficulty integrating and interpreting sensory data, and she shares interviews with some of them to give us an idea of what it's like to, for instance, see a yellow thing, see that it's a rectangle, examine the hinges for a bit, before finally concluding that it is a door. Or to be in a noisy restaurant and not being able to sort out the conversation you're in from the conversation at the next table.
In short, it's a great book for summarizing some of the best science available, and also for helping neurotypical people empathize.
Here are a few of the main conclusions I've drawn after all this reading:
1. Autism is primarily about imbalance rather than deficiency -- excelling in one or two areas while being underdeveloped in more general forms of intelligence, like executive function or social skills. So while autistic people are not necessarily geniuses, they may appear to be geniuses in their preferred subject because they are devoting much more of their attention to it. Marko's intelligence was tested during all his screening, and his IQ came in at 104 -- just about average, which was actually very surprising because he seems like a genius to me. But the results came with a caveat that the score was so scattered -- abnormally high in some areas, vanishingly low in others -- that it might not be useful.
2. Two of the most noticeable features of autism, adherence to routine and self-stimulatory behavior, are ways that autistic people manage overwhelm and anxiety. As such, you can't actually train children out of them. I have tried and tried, but have found that anytime I actually break Marko of one fidget, he comes up with another. When I stopped him from pulling his hair out, he started chewing his clothes; now I've mostly got him to stop chewing his clothes and he reaches down his pants to scratch his butt. These behaviors magnify a millionfold when he is stressed out. So rather than trying to extinguish these behaviors, I should be attempting to reduce stress, and acknowledging that when I ask him to do something scary and difficult, they'll crop up more. Likewise, in stressful situations, providing a reliable routine might be the best way to manage his anxiety.
3. The autism spectrum has a very long "trailing edge" -- that is to say, even beyond the point where a person could be reasonably said to have a disability, there are people with autistic-like experiences and behaviors. These are the absent-minded professors or Silicon Valley geeks who might be able to handle life on their own okay, but who still seem kind of awkward or "off." And these people are often the parents, children, or siblings of autistic people.
This is something I already knew, but it's kind of shaking me up at the moment. I knew I had some characteristics of autism (specifically, sensory sensitivity). But now I'm wondering if I'm more socially awkward than I think -- whether everyone around me knows this and just never said anything about it. I might write a whole separate post about this.
4. There are three different ways to look at autism, and it's possible that all are true. You can look at it as a disability, of course, because there are things autistic kids struggle with. You can look at it as simply a difference -- autistic kids are different and special and the world should adapt to them without making them feel like they're less. And last of all is as a moral fault -- in that autistic kids, unlike for instance blind kids, are expected somehow to overcome their autism and change, to actually rewire their brains as needed to gain the skills everyone else has.
Language of disability is useful when it comes to making adaptations for kids. To get the school to adapt, I can simply say "he's disabled and needs these supports." You'd no sooner expect him to succeed in a noisy, chaotic school than you'd expect a child with no legs to succeed in a school full of stairs. Language about difference is most useful when it comes to accepting the special and unique kid I have. He's not really defective, not to us, and perhaps other people could stand to learn something from him. In most respects I think the "moral fault" idea is wrong -- if we don't tell a blind person to quit waving that white cane around everywhere, why should we tell an autistic child to stop spinning? But since autism is somewhat changeable, this viewpoint has its place. When Marko said the other day that he has one friend and does not ever want any more friends, I knew that making friends feels impossible to him -- but I also know that it isn't actually impossible, so I'm not going to let him just opt out. If he grows up to be an introvert, fine, but he can make that choice after he's learned enough social skills to make it an actual option. There are some things he's going to have to do as matters of ethics -- learning to let other people play their own games without trying to control them; learning not to walk around proclaiming that he hates babies. He can do better and I expect him to, even while my goal is not to make him "indistinguishable from a neurotypical child."
5. There's a crap-ton we don't know about autism. We don't know why it affects more boys than girls -- are girls being underdiagnosed, or is there something about being female that protects them from developing autism? We don't know what genes cause autism, or what environmental factors play into it. We don't know what therapies work best. We don't know why some kids display autism symptoms from birth while others develop normally and then regress. We don't know what subtypes of autism there are and what treatments work best for each. It's kind of scary living in a time when we recognize the condition, but know so little about how to deal with it.
6. Autism is not the end of the world; it can lead to both struggles and superpowers. It seems best to me, at this moment, to think of Marko most of all as a regular kid, with both strengths and weaknesses. I want to play to his strengths without excusing his weaknesses. Once I've gotten him the help I need to get him -- speech therapy, which he started this week, and probably school enrollment -- I can relax again and just do what I've been doing for some time now ... gently pushing him into the next skill he needs to work on while trying not to push so hard I lock his wheels up. Exactly as I would do with another kid, except that his strengths and challenges are unique. I feel, after reading all these books, that perhaps I am qualified to be his mother after all.