book review

First thing: don\’t be worried about the readability of this book.  I tend to mentally prepare myself for exhaustion when I see hints that lawyers were involved in writing something I\’m about to read… but despite the law-firm-sounding name, Wrightslaw has actually put together a fairly plainspeak guide.  Normally one can expect a certain level of…  fine print, I guess?  Evasiveness. And just in general, a lack of clarity.  The authors of this book clearly made a point of avoiding that convention in favor of plainer answers, as much as possible.  I strongly approve.  I get very tired of trying to sort through Legalese, as I call it.  I much prefer simple, concise, clear wording.

My second major impression of this book\’s contents is pleasant surprise.  Generally when one mentions \”education\” I think of academics.  But whoever wrote the laws governing IEPs was apparently very aware of how truly different one child can be from another.  As such, IEPs can include everything from transportation to therapy to assistive technology.  From the stories I\’d heard, I kind of assumed the IEP was only meant to help a child learn math, reading, writing, etc.  But in fact, if deemed appropriate and necessary for the child\’s development, the school can provide things like ABA therapy, social skills groups, a wheelchair, or even a laptop for taking notes on.

I had no idea so many things were covered under the law, and it\’s flatly astonishing to know that someone (probably many someones) gave so much thought and concern to a population that most people wish would just disappear.  Whoever wrote those laws was exceptionally forward-thinking.  Normally people love to put special-needs children into little categorical boxes and say, \”You need this because you\’re this, and you don\’t need that because you\’re this.\”  Under the set of laws we have currently, it\’s illegal for schools to do that.  Instead, they are required to examine the child\’s specific needs, strengths, and weaknesses, and make a plan based on those things.  That\’s the \”Individualized\” in \”Individualized Education Plan.\”

Naturally, no matter how well-written the law, there will be people trying to bend it this way and that to avoid expense, effort, and time.  Which is why this book makes a point of answering a lot of commonly asked questions, grouped into 14 different subjects.  Topics included in this book are: how to write a good IEP, who\’s included in the IEP team, what kinds of services can be included in an IEP, transition services, how to resolve disputes with the school, and even what things to do when you\’re transferring schools.

While this wasn\’t the most riveting book I\’ve ever read, it did answer pretty much every question about IEPs that I\’ve ever heard from a confused parent, and a lot more besides.  It even makes the point of telling you when laws may differ by the state, and prompts you to do research of your own.  There are also links to additional resources interspersed in the pages, such as a comprehensive list of all the services and accommodations you could ask for in an IEP, sample letters to a school regarding a particular issue, and checklists to photocopy and take with you to IEP meetings.

After reading this book, I kind of wonder what my IEP would have looked like, if I\’d had one.  I didn\’t really struggle academically, save for a few subjects I really didn\’t like or care about.  But if the education includes appropriate development…  the IEP would probably have to have something about reducing my anger issues in middle school.  Maybe emotions recognition and management training?  I still find that somewhat challenging, but I think I\’m improving.  And perhaps something to help with my chronic anxiety and depression.  I bet that last one would\’ve been a headache and half, though, both for my parents trying to fight for it, and for me having to sit through it.  I\’m also not sure I would have appreciated it, at the time.  I was pretty set on being left alone in middle school and high school.  Of course, perhaps having a therapist or someone I knew could be trusted to help me help myself might have changed that.  I have no idea.

Read This Book If

The topical essays aren\’t disparate \”try this!\” ideas as I feared, they\’re organized by general subject.  So the broader subjects of mindfulness, meditation, yoga, expressive art therapy, and sensory therapies each have a collection of ideas within them. So there are, for example, several kinds of meditation you can try. 

I had no idea there were so many different kinds of meditation!  Chanting meditation, which is often parodied in media with robed, skinny monks sitting in funny postures, intoning \”Ommmm…\”  (You may chant something else, but apparently one ancient culture insists \”Oum\” is the word of creation.)  There\’s a kind of meditation where you try to empty your mind and still your thoughts.  There\’s meditation with prayer beads of some variety.  A mantra-based meditation, where you focus on a phrase and try to internalize it.  And a more recent arrival, self-compassion meditation.  I thought it was so cool that there were so many ways to do an ancient practice like meditation. 

I was amused to look through this book, especially the last couple sections, and recognize that some of these techniques the book is teaching you are stimming.  There\’s a type of rhythmic finger tapping they teach you how to do.  The roots of this are in a ancient China, but c\’mon.  Tapping your fingers on yourself is obviously stimming.  Only, it\’s acceptable, because \”Ancient Chinese meditative practice.\” 

Same goes for many of the sensory therapies, like aromatherapy.  Using something that smells nice to perk you up, or remind you of better times?  Please.  I hear that exact same strategy spoken about by other autistic adults.  They use it as a coping strategy to endure the trials of being neurodiverse in a world that doesn\’t want us around. 

I particularly got a kick out of the entry on soothing your senses, which included touching soft and smooth fabrics, darkening a room, and taking off any restrictive clothing (such as shoes).  Could this seriously be any more obvious? 

Naturally, the whole book wasn\’t a primer on \”Things Autistic People Do To Cope,\” but so much of it was that I spent the latter half of the book being amused rather than learning anything. 

On a more personal note, I found this book instructive but it didn\’t personally describe my particular comfort food tendencies, which disheartened me considerably for the first half of the book.  The first 40 pages or so describe a particular eating stress cycle that some people get locked into.  Basically, a person experiences stress, which makes them want comfort.  They then eat something, feel better temporarily, then feel worse and guilty about eating whatever it was.  This leads directly back to stress, and the whole thing repeats. 

That is not how food and I work.  The book makes much noise about the comfort and positive feelings of eating food only last a few seconds.  That may be true for some people, but it is not true for me.  As I was struggling through this book, I examined how I ate comfort foods and whether I did in fact only enjoy them for a short time.  And whether I then descended into guilt afterwards. 

The answer was no, I enjoyed them the entire time I was eating them, and did not descend into guilt afterwards.  My sources of stress are mainly not food related, and though I do indulge in comfort-eating, I\’m pretty mindful about it.  If anything, this book, with its suggestion to eat mindfully, simply increased how much comfort and pleasure I derive from eating said comfort foods. 

Maybe this, like other aspects of my life, is simply a thing I process and deal with differently due to being autistic.  Or maybe I simply haven\’t had time to get into the complete cycle as described in the book.  Either way, I read the first section of the book with increasing frustration and annoyance. 

That said, the information in this book is neither invalid due to that, nor useless.  It\’s cheaper on the wallet to engage in meditation than it is to make pancakes or a mug cake, or to put on some music with your computer or phone, or even to drink a cup of tea.  And really, less effort to do any of those things rather than cook.  So yeah, this is still very good information.  I just had a hard time recognizing that as I read the book, due to the \”this is you, isn\’t it!\” tone in the first section, and its incorrectness. 

Read This Book If

You struggle with comfort eating, or even, like myself, use comfort eating as a stress management tool.  Autistic people, parents, special ed teachers, whoever: today\’s modern society has an excessive amount of stress, and the body can only handle so much of it before it starts performing sub-optimally.  It doesn\’t hurt to add other stress management tools to your toolbox, especially when some of them don\’t touch your wallet and some of them are so inexpensive they might as well be free.  There are ones that aren\’t (yoga or tai chi classes), but those are likely worth the price, too, if the effects are as they were described.  As for me, I didn\’t have high hopes for a book that\’s obviously the sequel to a previous book of the same name… so I\’m now curious as to what ideas are in the first book.

As I read this book, I did somewhat wonder if the conversational tone Luke used here isn\’t a commonality to autistic writers in general.  I think I tend to write in a similar, albeit more pedantic and less familiar, style; that is, I write somewhat like I\’m having a conversation with my reader.  In this book, Luke has the charm of an enthusiastic, helpful preteen boy that hasn\’t quite hit the rebellious stage that often accompanies adolescence. 

I, on the other hand, probably still write like I swallowed a dictionary at a formative age…  I didn\’t, but that didn\’t stop my classmates from accusing me of doing so- or at least assuming I read the dictionary for fun- at Luke\’s age.  I found dictionaries exceedingly boring to read straight, actually.  My vocabulary came from the plethora of books I read as a child, and I simply osmosised the words from context.  Apparently Luke reads a lot too, so perhaps his next book will have a tone more similar to mine. 

Another similarity here is the use of idioms throughout the book.  While many autistic people find idioms and common phrases to be a stumbling block, Luke tosses them liberally into his book.  Sometimes there\’s an explanation right next to the idiom, sometimes you have to reference the explanations of them at the back of the book.  But either way, the author thoughtfully made sure his autistic readers would understand the strange twists and turns of English. That\’s a kindness, because there are 45 of those idioms listed in the back, and Luke is British, so not all the phrases were familiar to me. 

I think I mostly made my way through idioms by asking people when I ran into them, or by puzzling them out from context and the specific words used.  \”Loaded for bear\” is one I learned recently.  I had to ask about it when I heard it first, but the explanation made enough sense that I won\’t forget it.  Basically, as settlers went west on the Oregon Trail or other trails, they would need to go hunting sometimes to get fresh meat.  This was dangerous, because deer and bison weren\’t the only things out there.  So some cautious settlers would bring ammunition to hunt bears as well as ammunition for deer and game animals.  Thus, going somewhere \”loaded for bear\” means you\’ve made yourself exceptionally well-prepared and ready for trouble if need be. 

Something else Luke and I had in common was our experiences with martial arts.  Right down to what he calls dyspraxia and I call \”just not being good at active things.\”  In essence, neither of us were very good with hand-eye coordination or motor skills.  Naturally these things can be trained… and that\’s more or less exactly what happened with his Taekwando experience.  I don\’t agree with Luke that it\’s the perfect exercise for autistic people, but I\’m glad he finds it so predictable, structured, and helpful.  I suppose it\’s not a perfect comparison: I took Tang Soo Do, which is a different, older, less sport-inclined style. 

But still, it did give me confidence, as it did him, and did train me how to defend myself a bit.  As both of us were targets of bullies (him much, much worse than me), this is very important.  Not merely that you can disable a bully and get away, but simply knowing you have that capability is very reassuring.  It makes you feel, to yourself, less like a potential victim and more like a self-validated person.  This is particularly important for people born female, sadly, as the crime statistics easily show. 

One last thing to point out.  Autistic people, as you probably know from reading this blog, tend to have unusual ways of looking at things and understanding things.   Luke is no exception, and two of his oddities struck me as important to point out.  First, while an autistic person\’s deep and abiding interesting in a subject or field is very definitely called a \”special interest\” or \”obsession\” in the US, Luke has opted to reject those words and instead has chosen \”specialist subject\” as his description for it.  This is, I think, a good development, as many autistic people make their specialties into jobs.  It\’s needlessly cruel to start with calling someone\’s favorite hobby \”an obsession\” before it hits that actual mark. 

The second thing Luke introduces is calling a diagnosis a signpost, rather than a label.  The idea is that rather than a diagnosis being a box, in which you put people and they supposedly fit perfectly, a diagnosis is a signpost that directs you where you might head next with your life.  This is far more accurate than the label/box idea, particularly when it comes to autism… the saying is that \”if you\’ve met one person with autism, you\’ve met one person with autism.\”  We are often very different, and very different things help us thrive and have full lives.  Instead of assuming the diagnosis will tell you who you are and what you need to be doing, the signpost idea is more of a suggestion… which is far more helpful.  This is in keeping with his general attitude through the entire book, which is a modest, \”Well I\’m still young yet, I don\’t know everything.\” 

Read This Book If

I do think this is mostly sound advice.  I read somewhere that there are basically two personality types when it comes to the Unknown: those that view it as an adventure (and thus exciting), and those that view it with fear.  As I understand it, people mostly fit into one category or the other, but can shift between them.  Autistic people, as far as I\’ve seen, mostly fit into the fearful category.

This is, I think, because the Unknown tends to bite us more often than it does others.  If we go into an unknown social situation, there\’s a good chance we won\’t know the right things to say or do.  This makes interaction a social minefield.  In addition, we don\’t necessarily recognize the difference between a known and unknown social situation… and even in known situations, people are so complex and unpredictable that we may still end up \”exploding\” a social mine… which causes sadness, hurt, and finally, anxiety when it comes to social situations.

In addition to the social component, many autistic people have sensory issues.  I have mild light and touch sensitivites, moderate smell sensitivity, and moderate-to-bad sound sensitivity.  In a new situation, there may be new and/or upsetting noises (like construction or emergency vehicles, or industrial blenders with a fork accidentally stuck in them), or flashing lights, or someone may have coated themselves in perfume…  You never really know, and when it\’s so easy for painful things to happen to you, it makes you really not want to bother with any of it. 

So the advice and suggestions herein is for parents and professionals to nudge autistic people past those misgivings, in a supportive, loving way.  You can\’t simply demand the autistic person put all their concerns aside and boot us out the door.  That\’s neither loving nor kind nor helpful.  You have to strike a balance between that insistence and understanding and supporting us and why we do what we do.  That\’s what this book is there to help with.

Along with its advice, the book uses examples drawn from real autistic people and their families, who are introduced early on in the book.  I wasn\’t personally blown away by any of the stories, but I think they\’re important because US society has a very specific definition of \”success.\”  It goes: \”dating, engaged, married, house, lots of money, children, grandchildren.\”  If you don\’t manage all those steps, you are, apparently, a failure.

Well that\’s stupid.  And it\’s really stupid that autistic people are subjected to that same absurd definition, when even a lot of neurotypical people have satisfying lives without several of those components.  Autistic people are even more specialized, and in a lot of cases, the traditional path to \”success\” would simply make us miserable.  Being miserable is not success, it\’s failure.

So these stories, which contain various kinds of successes, are much more appropriate kinds of success to shoot for with an autistic adult.  Things like getting a job in a field you love, or living independently, or contributing to society via volunteer work you enjoy, are much wiser goals than society\’s cookie-cutter song and dance. 

On a less happy note, this book also contains a \”how to deal with video game addiction\” section.  While I understand this is an important subject for some parents, I almost invariably feel attacked when I read things like this.  I don\’t feel my gaming is excessive most of the time: I balance my work (this blog), a volunteer job (at church), social obligations, 5 day a week exercise, and extra obligations (currently, putting my new house together) with my gaming on World of Warcraft.  Y\’know, one of two games specifically called out in the chapter as bad.

Reading complaints and advice about how to deal with video game addiction, to me, is like a hiking enthusiast, every time they pick up a book about exercise, reading about how ticks carry Lyme disease, wild animal bites, rabies, and shin splints, and thusly that hiking should be avoided at all costs.  Every.  Single.  Book.

Needless to say by now, I did not enjoy that section of the book.  Addictions come in all shapes and sizes, after all, and video game addiction is not the only addiction autistic people are prone to.  Despite the occasional \”but we only mean this if it\’s an addiction\” phrase tossed in there, the entire section feels extremely anti-gaming and to a lesser extent, anti-technology.  But like I said, I might just be oversensitive, like the hypothetical hiker reading about the dangers of hiking at every turn.

On a more personal note, I do wonder if this \”loving push\” thing is what I\’m currently lacking in life right now.  I don\’t think I\’ve gone and tried a lot of new things recently.  I have also not wanted to go and try a lot of new things recently, and that\’s in part because my life has been very complicated with house-hunting, then buying the home, then moving into it, and now setting all the stuff up inside it.

I wouldn\’t say I\’m bored, or wasting my time with the things I currently do…  But I guess I do wonder whether I sort of stopped trying new things outside the house.  I don\’t think I\’m an entirely lost cause… I\’m hoping to take my bike and go to the trail by my house when it gets warmer, and that would be something new-ish.  But mostly I don\’t go do new things.  They don\’t appeal to me, for reasons I\’ve covered earlier.

It\’s something to think about, anyway… 

Resilience is an important term in psychology when it comes to people with disabilities and those who care about them.  It\’s the word given to the capacity for people to get up after getting knocked down (metaphorically or otherwise).  People who experience a lot of difficulties, failures, and trauma, but still keep getting up to continue fighting the good fight, have a lot of resilience.  This is a particularly important trait for parents of autistic people, and in truth, autistic people ourselves. 

This book, therefore, aims to teach you how to develop this quality.  But not in a \”self help, do these 10 steps and you\’ll be better!\” fashion.  The author simply has a series of tips, observations, questions, and insights to offer his readers.  I found the content simple, honest, thoughtful, and useful.  It was also extremely brief and to the point, which I\’m very sure was on purpose.

The type of parents for whom this book is written don\’t necessarily have a lot of time to peruse its pages and contemplate long, complicated sentences and complex ideas… so there aren\’t things like that.  Each essay is 2-4 pages long, containing a snippet of story from the author\’s life caring for his children and some thoughtful but concise remarks and ideas.  And every essay ends with a thought or question for your own life, which is meant to help you use the ideas in the essay in your own life.  Basically, the book is meant to be accessible and usable by any parent, but especially the ones without much time and energy to spare. 

The book reminded me strongly of the daily devotional guides that my parents would read after dinner every night.  There would be a Bible passage (spiritual inspiration), followed by some concise discussion of that idea, followed by a \”how can you apply this to your life?\” paragraph.  This is perhaps an apt comparison, as the author has pastoral training and is no doubt very familiar with such books.

As an autistic non-parental adult, I found much of the content of this book still useful to my life, albeit after twisting it around a bit to fit my current situation.  I don\’t have kids, but I do have trouble with myself and my mood sometimes, and my spouse will naturally never be able to read my mind… in addition to having challenges of his own.  Some of the advice here can be made to fit my life, even though it\’s tailored for a very different one. 

I feel like a lot of this advice would be valid advice for any parent, regardless of whether the child has special needs.  Actually, one section of the book talked about how parents of special needs children have it a lot worse than most parents, but you do still have to respect that most parents still find their neurotypical children challenging.  And admittedly, raising kids is a challenging task, regardless of whether they have difficulties and disabilities out of the ordinary. 

Read This Book If

You\’re the parent of a special needs/exceptional child or children.  I think pretty much any parent would benefit from reading this book.  It\’s quite short, the content is concise and of excellent quality, and it doesn\’t demand much effort to read.  In 150 pages, Mantu Joshi provides advice, kinship, and a gentle urging toward being a better parent and a better person.  If I were going to raise kids, I\’d keep this book on hand. 

Overall I found this book an excellent read.   The author puts a lot of murky concepts into clear words, with numbered priorities for important concepts.  She also provides helpful examples and visual charts, such as a weekly chore calendar and a monthly chore calendar.  Though I could ask for blank ones to be included at the end of the book, or perhaps a link to a Google Drive document for easy use and printability. 

I found it somewhat telling, I suppose, that the book\’s spine was broken at the dating section.  Almost all of the books I review for this blog are borrowed from my state\’s library system, and while mostly the wear on a book is incidental, I suspect it\’s not in this case.  Loneliness is a huge problem for autistic people, and the author talks about this, as well as society\’s preached cure: finding a significant other and following the society-prescribed dating-> marriage -> house -> kids pattern.  This pattern doesn\’t even fit all neurotypical people, why would it be the best solution for us?  The author has other solutions to the problem of loneliness, which include volunteer work (also handy for finding a job), clubs, classes, and good self-care.

I was actually surprised to find this book did have a few things to teach me.  Mostly, I feel like these books tend to cover the most basic of basics and rarely go further.  Ms. Zaks\’ forthright style of writing and explaining life clarified a few things for me.  I didn\’t, for instance, really consider self-care a loneliness-fighting solution, but she\’s right, it is.  It doesn\’t solve the problem, but it\’s harder to be miserable about being lonely when you\’re enjoying yourself.

I also hope to adapt the Frustration Color Scale (Red= Emergency, down to Green = Neutral), for use at home with my spouse and for my personal understanding, as well as her Emotion Rating Scale (1-10, with 1 being things like dropping a box of paper clips, and 10 being something like a tornado leveling your home).  I feel like these tools could be very useful for communicating with my spouse regarding my emotional state, and probably useful for my own understanding also.  I don\’t really have a good way of judging my internal state, so having these scales defined on the wall or something would likely be very helpful, and it would also mean my spouse could potentially just look somewhere in the house to find out how I\’m doing.

All that said, this isn\’t a perfect book.  I was initially excited to find out this book was written by an autistic lesbian, and hoped she might offer some thoughts regarding being different on that spectrum also, but the section on that subject was less than a page long.  While she had good things to say, I do wish she\’d expanded on that section a bit.  The statistics are showing that autistic people tend to display a wider variety of sexual orientations and gender identities than the general populace (probably because we aren\’t as swayed by cultural ideals, so we simply are who we are).  So this would seem to me to be a rather important subject, worth its own chapter.  Perhaps the publisher disagreed, or the author wasn\’t aware of how widespread this seems to be.

The dating section is also pretty much just written for an autistic man hoping to date a non-autistic woman.  While that is the most common scenario, and the author says \”but you can adapt these tips to any situation,\” I felt kind of uncomfortable about the assumption, given the author\’s own sexual orientation.  The misunderstandings the author talks about could indeed come up in any kind of relationship involving an autistic person, but I guess I\’d\’ve been happier if female-female examples were used, or if NT male-autistic female examples were used.  I presume, given basic psychology, that I\’m most annoyed about the lack of the latter, since it describes my situation.

I also noted a distinct lack of anything beyond safety tips when it comes to discussing sex.  Considering the author apparently suffers a good number of sensory issues, it surprised me that there wasn\’t a discussion of the problems that can cause in physical intimacy.  I suppose there\’s still this book for a catch-all resource regarding that, but I\’d have been happier if a book that discusses love and autism also covered this rather central expression of love.

Those lacks aside, I was pleased to find a thorough discussion about the differences between autistic people raised female and those raised male.  The author has some excellent things to say on the subject, which I almost entirely agree with and haven\’t seen anywhere else in print.

I\’ve been tough on this book because it\’s gotten so much right.  It has an excellent discussion of the senses and how sensory issues can crop up, along with what to do about them.  Its priorities for home management are spot on, and the example solutions should be customizeable and work well for most people.  The transportation, shopping, and health care sections are thoughtful and cover most issues I can think of, at least in the basics.  The job section is short for such an important subject, but has excellent advice.  And in truth, there are whole books dedicated to exactly that subject, so if this one doesn\’t entirely manage it, there\’s other stuff out there.

The philosophy on relationships, friendships, and safety all seemed excellent to me, and the disclosure section was sufficiently nuanced that I felt it covered most scenarios, if not all of them.  Overall, I think this book more or less lives up to its title, which is a rare and impressive feat in my experience.

Read This Book If

I found the scope of this book very narrow, all thing considered, and perhaps more suited for 20 years ago than now.  Today\’s understanding of sexuality and gender identity allow for a much broader range of relationships than \”cis straight girl with cis straight guy,\” which is all this book really addresses.  There is no discussion whatsoever about same sex relationships, trans people, or genderfluidity.  The lattermost is relatively common in autistic people, apparently, with myself as the obvious example.  I am agender, meaning I would like you to take your gender stereotypes and toss them in a fire, far away from me, thanks.  Some people feel they have traits of both genders, or are more one gender than the other depending on the day. 

So, all of this is skipped.  This book is intently focused on abuse-prevention in the most statistically common relationship or sexual situation.  The language choice is simplistic and written for literal-minded people, which is excellent given the intended audience.  Not every autistic woman needs these accommodations, naturally, but it doesn\’t hurt.  Particularly since the subject matter makes most people uncomfortable to talk about, even if it\’s their job (looking at you, guidance counselors and sex ed teachers…).  The writer tends to start technical and then get into more detail, and list \”rules\” and priorities for those rules, which I think is good for the kind of black and white thinking autistic people are prone to.

One good point about this book is that it includes a discussion of boundaries.  This subject is, as far as I know, not one that was ever discussed with me until last year.  I was expected to simply learn this information on my own, somehow.  (By the way, the person who helpfully discussed this with me?  She\’s gay, knowledgeable, and awesome.)  So the author here defines boundaries, and then lists some basic ones, including ones I hadn\’t really thought about as specifically boundaries.  This transitions into how to say no, why to say no, and how to handle hearing \”no\” from someone else.

The author does take a lot of time in this book to talk about herself, which is why I\’m able to safely say that she has the opposite problem that I do.  On the spectrum of independence, with \”overdependent\” on one end and \”refuses help from anyone or anything\” on the other, the author falls closer to \”overdependent\” and I fall more near \”refuses help from anyone or anything.\”  The healthiest place for people is right in the middle of that spectrum.  No one is truly independent in truth, not the richest person in the world nor the poorest hermit.  The tools we use, the food we eat, the clothes we wear, even the work we do, all rely on other people.  But as a rule, this author seems to prefer other people swoop in and solve her problems all the time, whereas I tend to prefer to solve my problems myself regardless of how much quicker or better it would be for someone else to do it.

I suspect the author\’s end of the spectrum is more common in disability circles.  Part of the reason I\’m relatively anti-getting help is because I learned very young that no one would help me anyway.  So it doesn\’t really occur to me to ask for help, or include other people.  But most people with disabilities know about their disabilities and are given help whether they want it or not, which seems, in my experience, to lead to relying on that help.  Again, this is not necessarily a bad thing, since everyone is dependent on others.  It\’s just a problem if it becomes overdependence.  The author talks about her struggles with overdependence a bit, along with her emotional struggles regarding sexual abuse.

Which is the last thing I\’d like to point out about this book, in fact.  While overall I found this book a little too simplistic and limited for everyday life, it does make a point of walking you through some common reactions to sexual abuse, how to work through them, the complicating factors, what things you should do if you\’ve been raped and what to expect with the aftermath, etc. 

Read This Book If

The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness, by Miriam Kaufman, Cory Silverberg, and Fran Odette is a reference volume of over 300 pages.  It contains an entire education\’s worth of sex ed, from myths (chapter 1) to philosophy (chapters 1, 2, 3, and 10), to anatomy and how-tos (chapters 5-9), to safe sex and identifying sexual violence (chapters 4, 12, and 13).  Each chapter is accompanied by quotes from various people with disabilities talking about their experiences.  I don\’t think I\’ve ever come across such a complete, thoughtful, positive treatment of the subject, particularly when it comes to people with disabilities.  Needless to say, I hope, I consider this book a fantastic resource for any person, especially given the rather lacking sex ed courses I myself went through. 

Please note that this book is written in broad brush strokes, in hopes of being useful to as many kinds of people with disabilities as possible.  It is not, therefore, autism-specific, though at least one of the quotes from people with disabilities was autistic.  Several chapters include sections of specific things to keep in mind for physical disabilities, or chronic fatigue, or other impairments.  There\’s less emphasis on mental and emotional disabilities or differences.  But, admittedly, it\’s harder to make broad recommendations for such a diverse group.  They do, at least, have a paragraph here and there about hypersensitivity to touch, which is often applicable to autistic people.

Something important to mention before I go much further, is that one of the first myths this book dispels is the \”people with disabilities and chronic illnesses are not sexual\” myth.  I have never personally suffered from this myth, but I\’ve always \”seemed\” normal, so that\’s probably why.  I do think the authors are right on target with this, though, that people in wheelchairs or who have other obvious disabilities are assumed to be like children, despite having the brains, temperaments, bodies, and libidos of an adult.  This myth is obviously ridiculous when you look at it too hard, but I don\’t think most people do, because sex is assumed to be only for the young, healthy, and beautiful in US culture.  Never mind that the human species would have died out if that was actually the case…

For me, one of the most important chapters in the book was Chapter 4, which is on communication.  I married my spouse last year, and we have since done some exploration into our sexualities now that it\’s socially acceptable to do so…  but a major hindrance has been my difficulty talking or thinking about the matter.  Society, especially the church, has preached loudly and clearly that sex should be considered a shameful thing that you\’re only allowed to do once you get married, and that solo sex (masturbation) is unacceptable.  Nobody wants to talk about it.  Sex ed is perfunctionary at best.  So most of what I\’ve learned on the subject, I\’ve been learning in my 20s.

This book could change all that.  Because, like anything else in a relationship, communication is key.  You need to be able to tell your partner what you like and what you want, and your partner needs to be able to tell you those things, too.  That\’s difficult for me, between my social conditioning, my sensory issues, and the fact that I become nonverbal when I\’m sufficiently involved with sex things.  The end result has been a lot of frustration, overall.  This book has suggestions for that, though.  You can establish hand signals to indicate things like \”Yes, this is good,\” \”no, this isn\’t good,\” \”do more of this,\” and \”stop.\”

Another notable positive point about this book is that it is relatively LGBTQIA+ friendly.  While the book doesn\’t go out of its way to make a big deal about it, people of all kinds are represented in the quotations.  The book does simply refer to people who have vaginas as \”women\” and people who have penises as \”men,\” but I think it probably does that for simplicity\’s sake, rather than any particular transphobic-ness.

The last thing I found interesting about this book is that it had a number of sections talking about how to deal with being a sexual person while institutionalized, or having attendants or support staff around a lot.  As a whole, the disability community is trying to move away from institutions, but they\’ll probably remain a (horrifying) thing for a while longer.  So the tips and suggestions in this book are very valuable for frustrated, dehumanized adults in institutions.

Before anyone gets too horrified about all this positivity and talking about sex, please do keep in mind that one of the reasons sexual abuse is such a powerful form of abuse is because no one wants to talk about it or hear about it.  This is particular true for disabled people, who are assumed to not be sexual, desirable, or competent in any fashion.  Look up the statistics for sexual abuse against disabled people, look me in the eye and tell me that isn\’t a problem.  The solution isn\’t hushing up the matter, it\’s making it safer to talk about, so everyone can be safer about sex, more educated about themselves and other people, and make better decisions.

But this book does go into the necessary precautions and safety tips for having a safe sex life: everything from abusers and allergies to STDs and birth control.  I was a bit disappointed that their birth control section really only covered condoms and female condoms, and there are over a dozen different options, with more being researched.  But admittedly, adding hormones to a person\’s already shaky biology can be a really bad plan, and a lot of the current birth control options are hormone-based.  Additionally, many of these options aren\’t very disability-friendly.  For people with physical disabilities, even condoms aren\’t all that accessible, with the exception of one brand of polyurethane condoms that they highlight (and I couldn\’t find online, sadly).

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In short, it was worth the effort.  This is a fantastic book and I consider it required reading for any parent of an autistic child.

I was initially somewhat suspicious, as it is wise to be, of this book which claims to speak for autistic women.  Autism, as I\’ve tried to express in entries past, is a very complicated, multifaceted, and unpredictable condition.  The saying is, \”if you\’ve met one person with autism, you met one person with autism.\” (Attributed to Dr. Stephen Shore)

However, my fears were unfounded when it came to this book.  Certainly not all pieces of advice and promptings here apply to every autistic child, or even every autistic girl… but in large part, the book proscribes broad ideas (like assuming competency and capacity, teaching and setting boundaries, allowing for autonomy, and letting the person grow at their own pace).  These ideas are, frankly, a good plan for any autistic person, not just a female one.  That said, the book does address some specifically female issues, such as makeup, feminine clothing, periods, and boundaries in a sexual context.

To my astonishment, it also addressed issues of gender and sexual orientation.  This book was published about a year ago in 2017, but given how incredibly hetereosexual-centric and cisgender-centric most of the literature on autism is, I was not expecting such subjects to be addressed, let alone discussed in any reasonable fashion.  But one of these essays was written by an autistic trans woman, who I was both grateful to learn more about and saddened by her difficult experiences.

That\’s not all that made this book stand out, though.  Much of the autism literature that is written by autistic people is written by people like me: so-called \”high functioning,\” verbal autistics that can pass as neurotypical most days, in most contexts.  This book specifically includes a couple essays from \”high needs\” and \”non-speaking\” autistic women.  These are people who would otherwise be relegated to institutions, but due to hard work and help, are able to live independently and bring help into their own homes as they need.  And they have some very strong things to say about institutions, things I wouldn\’t have dreamed of considering.  If the entire book was only those essays, I would still insist this be required reading for any parent of an autistic child. 

The essays in this book come in a variety of arrangements, from letters to bullet points amidst paragraphs to labeled sections covering topics.  This is also the only book I\’ve ever read where the introduction is just as valuable as the rest of the book.  I know some people skip the introduction, preface, foreword, etc.  I never do, but if you do, please please read the introduction anyway.  It\’s worth it.  It summarizes a major point, that there\’s a place for each autistic person no matter what their capabilities and personality, in a very powerful way.

All in all, this book goes on my wishlist and on my bookshelf permanently.  I cried over a few sections of it, because of the familiarity and because in so many ways, it\’s what I wish my parents had known when they were raising me.  It\’s a primer in how to raise an autistic child the right way, not specific steps so much as broad ideas from which to create those specific steps.  I can\’t recommend this book highly enough. 

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