book review

The crusade through my local library continues.  This book, titled Revealing the Hidden Social Code: Social Stories ™ for People with Autistic Spectrum Disorders, by Marie Howley and Eileen Arnold, centers on how to use and create a particular teaching tool called Social Stories.

These are basically explicit descriptions of situations or events in a person\’s life.  Usually ones that person might or is currently having trouble with.  For instance, one of the examples was for a child with sound sensitivity.  The child was likely to need to take a train to see his grandparents in another part of the country,  but his mother knew getting him to act calmly in so much noise and chaos was going to be a trial.  So she wrote a Social Story to introduce him to the train station and the trains.  Train stations are loud and sometimes chaotic, so she wrote out information about why and where they would be going in the train station, including pictures of the places in the station they would be.  The idea was to prepare him for going to the station, so that when they actually went to the train station, he wouldn\’t be so upset by the noise, chaos, and newness of everything.

Social Stories can be adapted to pretty much any situation under the sun.  While the book contained relatively few examples, the examples varied from elementary school situations to advice for break room situations at an adult job.  In short, they\’re a tool that you can just keep using as situations pop up.  While they\’re text-heavy, they needn\’t only be textwalls.  Pictures, symbols, and other shorthand that has meaning to the autistic person can be used in conjunction with the words, or instead of them.  The final idea is not merely to give instructions so that the autistic person understands what to do, but also to communicate the why of what they\’re doing. 

When I first saw this book on the shelf, I wasn\’t able to read the second part of the title, so I only read that it was called, \”Revealing the Hidden Social Code.\”  Between the thinness of the book and the name, I thought perhaps I\’d stumbled on a primer to acting normal (ie: not alarming the neurotypicals with your weirdness).  I\’m not really sure what would be in such a book, but this is definitely not that sort of book.  Rather, it\’s a primer for writing Social Stories.

I was initially bemused by the concept of Social Stories, though I had heard of them.  One of my friends used to work for the creator of the concept, Carol Gray.  I had not, however, gotten much introduction on them, so reading several of them proved interesting.  After reading a couple, I felt somewhat patronized.  The language is simple, and the concepts used for the examples are things I do without any undue trauma.  But of course, that reaction isn\’t terrible fair, since when I was little, I probably could have used these examples, or ones like them. 

My major problem, after all, was not my light, sound, and touch sensitivity, or even my shoddy detail vision processing, anxiety, and depression… it was my lack of understanding of social protocols.  I painstakingly learned these myself, but I imagine I was more of a trial to put up with than I might otherwise have been with some pointed instruction.  I already read a lot as a child, and while I much preferred fiction to nonfiction, I was also pragmatic enough that I suspect I could have been talked around to using these stories.

I suspect something like this could be still useful to this day, but even the advanced formats are rather restrictive to use on a prickly adult like myself.  I also have the capability to generalize based on past experiences, so short of, say, going to another country where all those expectations are vastly different, I\’m probably fine without them.

Read this book if: You\’re a parent, professional, or support staff for a literate person on the spectrum, and Social Stories seem like they might help accustom them to new and potentially upsetting situations.  If you\’re already using Social Stories and haven\’t read this book, I suspect you may find it helpful for improving the use and accessibility of your future and current Social Stories. 

Continuing my crusade through the local library, meet The Autism Revolution: whole-body strategies for making life all it can be, by Martha Herbert (PHD) with Karen Weintraub.

Apparently the trend in book titling these days is grandiose names.  Perhaps if I ever get my ideas sorted into a book, I should name it, \”The Answer to Life, the Universe, and Everything about Autism,\” and see if that helps the sales…

My snark aside, the premise of this book is excellent.  It attempts to integrate the perspectives of mainstream medicine (safe effective therapy!), biomedical advocates (personalized maximized approach!), parents (help my kids, don\’t make me fight everyone), and families who have succeeded (learn from our example!).

So it was with high hopes that I started into reading this book.  Unfortunately, my hopes were soon overshadowed by uneasiness.  I mentioned last week that autism is a near-useless descriptor, but even so, it disturbed me to see the authors talking about \”erasing autism,\” or \”reducing autism.\”  The one perspective this book doesn\’t seem to have is the neurodiversity perspective, or the \”we are all better with more diversity\” perspective.

I think, as my LENS-doctor pointed out, that this is a case of \”autism\” not meaning \”my particular autism.\”  This book seems to be geared heavily towards parents, and parents who are having to struggle very hard to help their severely-affected children.  Kids who, for instance, don\’t speak, or have apparently incurable diarrhea, or flatly refuse to eat anything that isn\’t their 10 favorite foods.

Still, knowing that and believing that are two very different things, and I couldn\’t shake the feeling of dread and unease as I continue to read this book.

That said… as a workbook for parents with heavily affected children, this seems to be excellent.  Dealing with my own autism has shown me rather emphatically that it\’s never really just one thing that needs tending.  I could focus heavily on learning how to better interact with people, but then I wouldn\’t be caring for my depression, my anxiety, my tendency to eat poorly, my hygiene, my supplements, my exercise…

This book focuses on mapping out your particular problems and suggesting changes that may help for general categories, like food, gut bacteria, sensory issues,  care professionals, and body-brain miscommunication.  The author is well-read and thoughtful enough to know well that no one treatment works for everyone, and so has a wide variety of suggestions on many topics, backed up with real stories of real people.   

In general, the advice in the book seems excellent given what I know of my history, treatments I\’ve read about and heard about from my doctor, and general best practices for good health.

My complaint is that this book pretty much exclusively uses \”autism\” as a synonym for \”everything bad about your child.\”  That\’s kind of offensive to me, frankly.  It\’s not an unusual usage for parents, but as a person with autism who doesn\’t really see it as \”a curse to be overcome,\” I really, really wish they\’d talked to a few neurodiversity advocates before writing this book.  Though the authors painstakingly avoided the word \”cure\” in regards to autism, they might as well not have bothered.  Their focus is more or less that, though I do again have to note that \”autism\” to these authors is \”everything wrong with your kid that isn\’t covered elsewhere.\”

If we\’re being entirely fair though, the \”your kid is a human being of value\” perspective isn\’t lost on the authors.  They actively encourage you to get inside your kid\’s world, not simply so you can drag them into your world, but because their world is also of value.  So it\’s not like the entire of the neurodiversity viewpoint is lost.  Just the simplest understanding of it.

I personally view autism as not merely the diagnosis, but the actual brain and genetic differences that led to my acquisition of said diagnosis… and so \”curing\” me is neither a possible nor terribly welcome.  But it\’s possible that if we merely view autism as the diagnosis, that I would no longer qualify, now or in the future, because of my skill gains and other improvements.

Read this book if: you or your child are severely affected by autism, or if you\’re feeling overwhelmed or feel out of options.  It\’s a good background in the science and perspective of multiple schools of thought, even if it is missing in large part the neurodiversity aspect.  Also read this book if you\’re pregnant and fear your child getting autism.  There\’s an entire chapter on things to do to try to avoid that. 

Continuing with the \”What does my library have about autism today?\” trend… comes this book, Understanding Autism: The Essential Guide for Parents by Professor Katrina Williams and Professor Jacqueline Roberts.

I was immediately somewhat taken aback by the fact that the book claims to teach you understanding of autism… but is only written by professionals.  But let\’s be fair here, the \”nothing about us without us,\” harking back to, \”no taxation without representation,\” is fairly new in the autism world.  Prior to autistic adults saying, \”Hey, uh, we have relevant information here too,\” all people had to go on was the word of professionals, and maybe other parents.  That said, this book is not 10+ years old.  It was published last year.

Another thing: the book covers childhood extensively, and adulthood… really not at all.  While I\’m aware the major emphasis in autism was focusing on simply getting the kid to adulthood, we really don\’t stay small and cute.  At all.  Hi, I\’ll be turning 28 this year.  Good thing I never had a \”hip with the times\” card, because I\’d need to turn it in, and I\’m told that realization hurts some people.

All that said, if you need strategies on toilet training, or how to sort out whether a given therapy works using science, or your young child has just received a diagnosis, you may find this book helpful.  Oh, especially if you learn best via lots of text.  This book is a textwall organized into sections, successively covering the stages of childhood.  Also, it\’s written by Australian folks, which means it comes with amusing words like \”weeing\” and \”pooing\” for toilet training.  I dunno if that\’s an upside for anyone else, but it certainly made me chuckle.

A point in the book\’s favor: each section comes with a set of resources at the tail of the chapter.  These are not exhaustive scientific studies, but online web pages with information relating to those sections.  In short, the resources they provide are not paywalled.  This is important, because scientific studies may be the best information on many things, but they are neither easy to read nor free, often enough.  So presuming these resources are good, this is an excellent thing about this book.  I did find a couple references to Autism Speaks, the biggest, most malevolent autism-related misnomer in existence, but to be fair, just because the organization is terrible doesn\’t mean all their information is terrible.

Final word: this is a book written by professionals.  They seem to have experience with medicine and with therapy.  These are good perspectives, but they are not the whole story.  This is not, as the title puts it, The Essential Guide For Parents.  It is, however, a good resource for parents just starting out with an autism diagnosis for their kids, and asking, \”Now what?\”

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence by Chantal Sicile-Kira and Jeremy Sicile-Kira, with a foreword by Temple Grandin

Somewhat deceivingly named, this book by Chantal Sicile-Kira (the mother) and Jeremy Sicile-Kira (the autistic son) mainly covers the transition from high school to college to employment.  While this is a vastly important and under-covered subject in autism, it hardly spans the entire life of a person on the spectrum.  As I understand it, authors rarely get to choose the final title of their books, though.  I grabbed this book off the library shelf after a mixed reaction to the title.  However, the front cover, noting proudly Temple Grandin\’s foreword, assured me a little more of the book\’s contents. 

The book is a deceptively thin-looking paperback, but in reality contains over 200 pages of direct, thoughtful, helpful advice, options, and things to consider when dealing with subjects such as housing, education, relationships, supports/services, and even sex ed.  I found the lattermost somewhat discomfiting, but I imagine that is often the case.  I do agree with the authors\’ assessment, though: Squeamish as the topic may be, it is vastly important that it be discussed and taught in detail.  No matter how well or how poorly a person on the spectrum blends with larger society, some things aren\’t or can\’t be taught in school.

The contents of the book are divided into chapters, with Chantal giving the majority of the information in plain text, and notes, thoughts, and information from Jeremy in italicized font.  This was more or less in keeping with the philosophy of the authors, which was, as much as possible, to let the autistic person determine their own fate, make their own choices, and plan for the future.  This is immensely important, and both the authors and psychologists elsewhere stress that importance.  It\’s a major predictor to how fulfilled and happy any given person is, on and off the spectrum. 

That level of choice can be a tricky conundrum when the person in question requires 24 hour/day care, or has aggressive tendencies that can be a danger to everyone, or is a \”runner\”- ie: they tend run off in a randomly chosen direction at any given time.  While the authors obviously came at the problems from Jeremy\’s perspective first, they made great efforts to include other situations in their writing as well.  They made a point to include short but useful perspectives from other people in other situations on the spectrum.  So there were some thoughts applicable to me, a fairly well-blending autistic person, as well as the other ends of the spectrum. 

For reference, Jeremy himself requires assistance to communicate.  I didn\’t get the entire story from reading the book once, but it sounds like verbal communication is immensely difficult for him due to his body not responding properly or at all when his brain tells it to.  He uses several assisted communication devices, anything from a pad of paper to a LightWriter to a smart device to type or write what he wants to say.  But he can\’t always even use those, because again, body not responding properly to brain.  So he is certainly not another \”almost neurotypical story\” like myself.  Between his words and his mother\’s words, though, I gather that they think it doesn\’t matter how well or how poorly you blend, you are going to have challenges.  They pointedly remark that those autistics that blend better can even have it harder, because everyone automatically expects you to be neurotypical and your act is almost perfect, but then it\’s not and people draw away from you. 

Overall I think this is an excellent guidebook to the transition from high school to employment.  It is not an itemized set of directions, but rather a series of information and questions to ask yourself and your parents/child with autism.  At every step of the process, Chantal and Jeremy have useful things to say and guidance to offer.  Chantal is direct and to the point with her information, and Jeremy\’s voice comes across as plainspoken, but honest.  Some of their information is most relevant to California, where they live, but most of it is relevant nationwide (and at broadest form, worldwide).

If I have one gripe about this book, it\’s that it\’s not the most inclusive for the gender spectrum.  I identify as agender, and as such \”they\” is the most applicable pronoun.  This book defaults to he/she, mainly he.  They address that and other inclusivity issues in the introduction, and really, complaining about it is like complaining that the new car you received needs a car wash.  If the book gets a second edition, then perhaps they could have a section for LGBTQ+ issues and more inclusive wording, but frankly it\’s an oversight I\’m willing to forgive.

Final word: definitely consult this book if you are transitioning or your child is transitioning.  It\’s chock-full of good information. 

I\’m presently reading my way through a book called NeuroTribes: the Legacy of Autism and the Future of Neurodiversity, by Steve Silberman.  This is after more than half a year of stiff resistance, or perhaps I should say nerves.  The book is heralded as basically the singular book to read regarding autism as a disability.  It\’s not a parents\’ how-to-guide, but a historical and philosophical work that presents the history of autism, early and current incidences of it, the development of various schools of thought, and then explains the concept of neurodiversity… or, more or less, the idea that humanity needs autism and other brain differences if we\’re to continue advancing as a species.

The book is well over 500 pages long, and as it\’s not a cherished fantasy story, I\’m making slow progress through it.  Thus far I\’m less than 150 pages in, but I highly recommend it (just like everyone else).

The first thing Silberman does is pore over documents of the past, in various languages, to bring us a few tales of clearly autistic people of the past.  One in particular was a nobleman of the 18th century, and his habits and mannerisms were so peculiar that they invited a great deal of discussion and comment… and so we have enough about him to put it together and clearly say, \”this man was probably autistic.\” The book details his later life extensively, where he vigorously set himself to the advancement of his curiosity and science.  But unlike most scientists, he cared nothing for credit or his name in history books, so most of his impressive discoveries were never credited to him, but rather to others.

I had to smile as I read the descriptions of the man, Lord Henry Cavendish.  When I was younger, I would throw myself into things that interested me much like the descriptions of him in the book.  And the letters and descriptions Silberman draws on regarding his social habits are all too familiar.

There are also stories of families whose children got their autism diagnoses young, and so were thrown into the therapy roulette.  I say \”roulette\” because so little was known of autism at the time, it was anyone\’s guess what might help a kid.  Things like bleach treatments, gluten-free diets, tests for heavy metals, therapists of all stripes, vaccines…  all were options.  To some extent, that\’s still true.  But we do have some evidence that Applied Behavioral Analysis (ABA) can help, now, which is leaps and bounds better than having nothing.

I\’ve just finished off the section on Hans Asperger, the man who lent his name to Asperger\’s Syndrome.  My formal diagnosis, years ago now, was in fact Asperger\’s Syndrome, rather than high functioning autism or even merely autism.  The difference, at this point, is merely semantics in the US.  The American Psychological Association rolled many autism disorders into simply the \”autism spectrum.\”  (I\’ve gone over a better visualization of the spectrum than the mere line I\’d always visualized already.)

It\’s always jarring and depressing for me to read about Nazi Germany. Had I been alive back then, I would have likely been killed or put in a concentration camp for my autism.  So that\’s the first connection that makes it more real.  The second is more profound to me: my dad\’s father lived in Austria, as part of a lapsed Jewish family.  Lapsed, meaning they didn\’t really take their religion all that seriously.  But that didn\’t matter to the Nazis.  A Jew was a Jew, and all of them needed to be eradicated, like every other \”genetically unfit\” person.  My grandfather escaped Austria, but we don\’t know what happened to his family.  Considering how little family I have, I take that rather personally.

Depressingly, the book points out that the concept of eugenics was not invented by Nazi Germany, but instead by the US.  Forced sterilizations, mental institutions, and poor treatment of the mentally ill were the order of that era in the US.  One Christmas, Chris\’ family went for their holiday walk at an old mental institution, and I swear I kept imagining being trapped in those bright red, freshly painted buildings with the insides falling apart.  The sheer amount of misery I imagined in those buildings haunts me.  A few decades earlier, and that might\’ve been my fate.  Temple Grandin and John Elder Robison were of the very few to escape being institutionalized for life.

The book details Hans Asperger\’s practices, several of which are very forward-thinking.  If, for instance, a child learns poorly, his questions were not \”what\’s wrong with the child,\” they were, \”why does this child learn poorly, and how can we change our teaching so he can learn better?\”  The author also credits Asperger with the understanding of autism as a spectrum, rather than a binary thing.  Apparently much of his writings and work was lost in the years during and after the war, and overridden by a different scientist, which is why it\’s only recently that we\’re starting to have these philosophies again.

That\’s as far as I\’ve gotten.  So far I\’m very impressed with the research and coherence Silberman has put into his work.  Tune in next week, dear readers, because this book has a lot more to say.