Tuesday, August 30, 2016

LENS and Life, week of 8/30/16

No sites for LENS yet this week, as we've switched to a biweekly schedule with a bit longer of a timeframe per visit.  I'm looking forward to this week's appointment, though, because I've been having trouble sleeping moreso than usual, and been completely unable to sleep in.  I'm tending to blame the Vitamin B, which by now has probably built up quite a bit in my system, but that's speculation.  I'll see what the doctor has to say.  But it's really unpleasant, to say the least.

Actually, right this instant I feel kind of dizzy.  Somewhere between dizzy and wound up, I guess?  It feels like a swarm of perplexed bees is stuck in my head, but distancewise they're maybe across the room or something.

I've used that descriptor for LENS-related stuff before, actually.  That was one of the first signs I had that LENS did something, was that feeling.  It went away after a day, though, and this has just sort of built up after awhile.

I've taken a couple "chill pills" to try and compensate.  They're mint-flavored GABA lozenges, so you basically just put one on your tongue and try to relax while the GABA neurotransmitters calm your brain down.  I carry them around regularly, but rarely use them because they don't do a whole lot for me normally, and I honestly forget they're there.  Carrying them does give me a sense of some security, though, so I carry them anyway.

Today, though, and yesterday, for that matter, I've used two at a time.  I think it helps?  It did yesterday.  I'm hoping it will today, because this is kind of miserable.  I'm having trouble focusing and doing anything I don't pour lots of effort into.  That bodes poorly for writing the rest of this entry, but since it's important to me that I do so, perhaps it'll be okay.

I'm... managing wedding prep stuff.  Somewhat.  Dress is in the process of being made, wedding favors are coming along, centerpieces are stalled on my end but not stalled on the potter's end.  My parents have offered to help with expenses of things, but I feel really awkward going, "hey, so this thing would be cool to have for the reception, wanna pay for it?"  Which I'm fairly certain is silly on my part, but it bothers me, silly or not.  I'm a little frustrated because I lost my notes on what I wanted to do with flowers for my bridesmaid(s), but I found some pretty materials online, so I got some.  I'll have to try to piece together something new, I guess. (My notes were on my tablet, prior to shipping it off to be fixed, so like all the rest of the local data, they're gone for good.)

Friday, August 26, 2016

Book Review- Revealing the Hidden Social Code

The crusade through my local library continues.  This book, titled Revealing the Hidden Social Code: Social Stories (tm) 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. 

Tuesday, August 23, 2016

LENS and Life, week of 8/23/16

Two sites last week.  I've been feeling extra frustrated and anxious, so we're trying to prop up my brain a bit more in hopes that it'll help.  I find it kind of hard to tell if it's working, but I'm sure, cognitively speaking, it's doing something useful. 

I've kind of had my feet kicked out from under me regarding diet change and weight loss.  My LENS-doctor, who also has a doctorate in nutrition, pulled the most exasperated face when I describe the heart-doctor's recommendation for weight loss.  And proceeded to tell me that even if I went on a diet of 800 calories, I might still not lose weight, and certainly not healthily.  The key, she reminded me, is not how little you eat, but what you eat.  You could do an 800 calorie diet while eating just Oreos, and you would not lose weight.  Or you could do a 1,600 calorie diet eating lots of fruits and vegetables and whole grains, and you would probably lose weight. 

A lot of my favorite foods involve white flour and sugar, so this does kind of suck.  But to add insult to injury, she also suggested I consider cutting dairy out of my diet.  Dairy, you see, tends to inflame the digestive tract, even in mutants such as myself that retain the ability to digest it beyond childhood.  (Most of the world does not produce lactase, the enzyme needed to digest lactose in milk, after childhood.  Western Europeans apparently mutated to do so, but that doesn't mean it's good for you.)

Dairy.  So, no ice cream, no milk, no cheese.  Possibly no butter.  I have a friend with an actual allergy to dairy, and he has to avoid butter too.  At which point, I basically can't go out to eat ever again, have to make all my own food, and can't be polite and accept offered food at parties or social occasions.  So basically I'd be even more of a social outcast than I currently am.  It's already anxiety and difficulty-inducing that I'm picky about my meat.  And that's just a simple "swap this for this, or better yet, let me bring the meat!"  If I start having to avoid cheese and other dairy, I might as well kiss my social life goodbye. 

This also would basically make 90% of the food in the grocery store no longer edible.  It's already depressing enough walking past all the meat and fish offerings, and the snack aisles, most days.  When I first became vegetarian, I found out the best way for me to avoid meat was to designate it "not food."  But that tactic gets a bit old when I'd essentially have to designate the whole of the grocery store "not food." 

Finally, I know where this particular rabbit-hole leads.  If I eliminate dairy, and it doesn't solve my weight loss/systemic issues, the next thing the doctor will suggest is eliminating gluten.  Without letting up on dairy.  So then I can't even have my whole wheat flour, I'd have to shell out for almond flour or whatever other kinds of flour are around that practically no recipes exist for. 

In short, I am very unpleased.  Counting calories is fairly simple for me, since I have an app that helps automate it.  Simultaneously, it keeps me accountable for what I eat, since I tended to input what I ate just before or just after I ate it.  That made it fairly easy to guilt myself into not eating bad things, or at least not eating very much bad things.  Finally, counting calories gives me a goal, which I can take many paths to getting to, and it doesn't entirely cut out sweets, just limits them immensely. 

But apparently all that is pointless, so I'm now floundering on changing my eating habits.  I don't know what to do.  I picked up a different app that doesn't focus on calories, but it also doesn't let me input precisely what I ate, and without that the accountability aspect is severely reduced. 

Exercise is going.  It's sadly not predictable, because my friends keep canceling for various reasons, and Chris only wants to commit to one day a week, if that.  I do best with a schedule, but I'll take what I can get.  It would be safe to say I am only occasionally making the 3/week exercise I should be doing.  Sometimes more than that, often less.

I might go out to a nearby park today.  It's not that far from home, and while I have serious concerns about being female and out all by myself, it might be okay?  Plus that particular park is supposedly a hotspot of a Pokemon I really like...

Friday, August 19, 2016

Book Review- The Autism Revolution

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. 

Tuesday, August 16, 2016

LENS and Life, week of 8/16/16

No sites yet this week.  My doctor seems to be pretty busy this summer, I guess.   If we're being fair, this is only the second summer I've been her patient/client/customer/whatever the PC term is these days.  Should see her next week though.  Since I can apparently go for about 4 weeks without relapsing too hard, it's basically fine.

It took an extra day because the postal service and the manufacturer weren't as careful as they should have been, but my tablet is finally back in my life.  It came back to me wiped clean of data, unfortunately, so I'm still piecing things back together.  All my apps, for instance, and the configuration.  Things like my RSS list (news, webcomics, humor sites) are gone entirely, and have to be re-added from scratch.  I estimate about 30% of what I had is gone for good.  Not everything I read was hugely popular, and I read a lot of things.  So I can't find some of it any more. I did have a momentary recollection of one of those fringe comics, and thankfully got it re-added before the moment deserted me, so perhaps all is not lost.

Except for the data issue, the manufacturer all but gave me a brand new tablet.  It came back to me in like four kinds of packaging and padding, with an effectively new case, carrying pouch, and charger.  I've paid the same amount of money for a repair from a local store and only gotten the immediate problem fixed.  I also didn't have to put up with nearly as much exasperation for the repair, but it's hard to argue with good presentation and overzealous repairspeople when they're not charging you extra. 

I kind of had a grudge against the manufacturing company prior to this, to the point that I was unwilling to buy their products ever again.  I might have to rethink that.  If we're being fair, the grudge was understandable but maybe not quite fair.  Between knowing that and the impressiveness of the repairspeople, I may just drop the grudge and buy from them again.  (Also, dear reader, please note that I am well aware serious grudges are hugely bad for you, and if this one had starting eating at me, I would have dropped it.  I have enough problems in my life without keeping a list of all the wrongs that've been done me.)

So now that the tablet is back, I can once again play Pokemon GO!  Chris and I went out on Saturday to walk downtown.  It was definitely hot and humid.  I did find a few silly things to post on my Instagram, though, so that was fun.  We walked around the blue bridge area, as there were sightings of my favorite Pokemon there.  No luck with that one unfortunately, as it's a rarer one, but we did catch a bunch of other ones and got restocked on items.  There were a lot of people out there!  We snuck by two wedding parties getting photos taken on the bridge.  Unfortunately we also got accosted by someone claiming to be homeless and hungry, but her story got less and less credible when she mentioned having coupons to the local food and rehabilitation place but not bothering to stop by there.  I may stop by that organization and get a few coupons myself.  An older friend of mine routinely has a pack of those, and she's able to basically ward off questions for money using them.  That's partly her experience, partly the coupons.  Each coupon is good for a full meal at the organization, and that organization also handles training people for jobs, beds and housing for people who don't have any, etc.  One stop shopping, I guess.  Each coupon is only a dollar, too, so if I'm going to be walking downtown, I think it'd be well worth my time.

I got sidetracked from exercise.  Oops.  If all goes well, I may exercise three times this week.  Chris and I will be meeting up tomorrow for lunch.  I was hoping to do a picnic type thing, but he developed a hatred of sandwiches during his childhood, so he'll probably pick up takeout Chinese.  But I'll bring a sandwich and we'll go to a park, eat, and hunt Pokemon there together.  I'm also going to Meijer Gardens on Friday to walk with a friend of mine.  I should get my bike checked over and reassembled.  Chris and I been talking about going on a bike ride on Saturdays, to hatch all the eggs we keep collecting.  You have to move a certain distance (2 km, 5km, and 10km) to hatch eggs, and while you can do that on foot, it's much faster to bike it.  You get eggs so quickly they pile up if you don't hatch them quicker, plus I like biking.  Just need to get our bikes in shape and find a place to go. 

I mentioned awhile ago that I was going to be checking into the condition of my heart, to see if anything had gone wrong or if there was a breakdown in the system that wasn't allowing me to improve while jogging, ever.  I did finally see the heart doctor, but he didn't run any impressive tests on me.  Apparently the test I was expecting to do was really not applicable to my situation.  The heart doctor did order a sleep study for me, though... so now it's going to be a few months before I hear about that.  And I'm unsure about how much Medicaid will cover for it, as well.  Sleep studies are expensive.  Also very uncomfortable, I'm going to end up sleeping in a laboratory, hooked up to a gadzillion machines.  If I'm lucky, though, it might explain why I still don't wake up refreshed in the morning.  I did notice earlier this week that the bruised darkness under my eyes is fading, so that's pretty cool! 

The other thing the heart doctor did was tell me that the 1,500 calorie restriction I pulled off a year or so ago wasn't a sufficient test of my metabolism for weight loss purposes.  Apparently he sometimes prescribes diets as low as 800 calories per day, in extreme conditions such as preparation for fat removal surgery.  He suggested I try 1,400 calories.  I found that annoying and not productive enough, so I'm trying 1300 calories, as of a couple days ago.

I can't decide if I expect this to work or not, but if it does, it occurs to me that I'd best not be too zealous about it.  I've already had my measurements taken for my dress.  I shouldn't be able to lose 20 pounds or whatever before my wedding, but if I did, it would be annoying for my costume-maker extraordinaire friend.  I'll settle for 5-10 pounds, if it even works at all, and then try to hold my weight steady.  That shouldn't be too difficult to adjust for, and it'd probably be helpful for my self-esteem, too.  I'm so tired of not fitting into my clothes very well... 

If this doesn't work, I could boot my calories down to 1,100, I guess.  But if I have to do that, I'm going to be really tempted to give up on weight loss forever.  So let's hope it doesn't come to that.

Finally, I started on a B vitamin complex last week.  I have yet to see any impressive effects.  But that also includes a lack of burping B vitamin "flavor," so I'm kind of okay with that.  My only question is whether it's doing me any good.  As to that, it's probably still too early to tell.  But I would say it's probably not a miracle cure or a significant piece of the problem.  Still might be helping, though. 

Friday, August 12, 2016

Autism is a Trashbin Diagnosis

English is a very ambiguous language at times.  We have one word for love, a concept that spans a mother's bond with her baby, the relationship between two platonic friends, and the passion between two lovers.  If that doesn't strike you as ridiculous, I'm not sure what will.

We have a similar problem, I've come to realize, with the word "autism."  The word itself refers to such a broad category of people, it's all but meaningless.  I've been trying to define autism since I got my diagnosis years ago.  I have been unsuccessful, and this perhaps explains why:

"Autism" means many different things to many different people.  It is a blanket label, slapped on any child that fits the laughably wide criteria in psychology's diagnostic manual.  No wonder, perhaps, that I didn't recognize my symptoms in the manual when I was studying it.  Nor did I particularly have much in common with many of the people who also claimed the label of autism.

The diagnosis F84.0, or autism, includes me.  I care for myself.  I own a car, I live independently, I went to and graduated college.  I have problems, but I'm clearly doing a few things okay.  A good start, right?  Well, F84.0 also includes a 12 year old who deteriorated suddenly around 4 years of age, cannot be toilet trained, cannot care for herself, can barely communicate...  her life's story is obviously not written yet, but needless to say, it's going to be a struggle.  Regular schooling hasn't been an option, given the lack of self-care skills and development. 

I've discussed the autism spectrum before, and how wide and diverse it is.  To this we can add the adage, "If you've met one person with autism, you've met one person with autism."  This is not a good situation.  On paper, I look precisely the same as my example child.  And that diagnosis is often all professionals see.  The point of a diagnosis is to convey, in a simple descriptor, a person's situation.  If, for example, I went to the doctor and told them I had the flu, they would immediately know what to tell me to do.  You can't, or at least really shouldn't, do that with autism.  Every person on the spectrum is different.  The child I'm using as an example has vastly different care and support needs than I do, and lumping us together under a single heading and thus implying our situations are identical is... disastrous.

If you met the girl I described prior to meeting me, and became familiar with her situation, you would be concerned that I don't have a guardian and am off on my own.  You might assume I'm being neglected and need in-home care around the clock.  Needless to say, I would not appreciate those assumptions. 

If you met me, became familiar with my situation, and then met the girl I described, you would assume she's simply being troublesome, stubborn, and mean.  You would be very very wrong.  And she and her family would suffer for those assumptions.

I'm simplifying the situation, obviously, and there are a lot of autistic people somewhere between me and the example girl, and off on their own with entirely different sets of symptoms and problems.

When I initially got my diagnosis, I was given a tangle of words that was supposed to describe what was wrong with me.  Chief among these was autism.  As such, I ascribed everything that was wrong with me that wasn't covered under the other diagnoses as "autism."  But I'm educated in psychology, and soon I began to question that categorization and what precisely autism was.  So I did my homework.  "Autism" as it's listed in the DSM-IV, or the new DSM-V, has nothing about my gut issues.  Nothing about my light and sound sensitivity.  Nothing about my pickiness about clothing and food when I was growing up.  It is listed, quite literally, as an impairment of social skills and communication skills, with a few side traits that may or may not be applicable to every given case.

So eventually between my reading and my exposure to the neurodiversity movement, I leaned away from blaming autism for every oddity about myself.  But not everyone does.  A lot of parents, for example, have their hands full caring for their kids who tend to bolt, or have regular meltdowns, and don't have time for philosophy given the immediate needs of their children and theirselves.  I also can't safely say even if they did have all that time and spare sanity to devote to the problem, that they would come to the same conclusion I did.

So now when people discuss autism, they're discussing not only the social and communication deficits, they're also discussing the food difficulties, the sensitivities to sensations, the seizures, the tantrums, the allergies...  And they're discussing these things in the context with which they are familiar.  A context I am, as often as not, unfamiliar with, at least in personal experience.

This troubles me.  My best resource is my personal experience, but it is insufficient.  And I will be expected to represent the entire of the spectrum.  I'm trying my best with the books I've been reading, and the articles, and talking with other people.  That seems like far too little, given the breadth of the experiences out there. 

Tuesday, August 9, 2016

LENS and Life, week of 8/9/16

August already!  Time is flying.  I have only a few months left before the wedding, and so much to do yet.  My dress is now in the process of being made, though, so that's a good start.  I've been dragging my feet on the flowers and other things, though...  If you recall a few Fridays back, the lack of my tablet is making me kinda miserable. 

Fortunately, that's about to end.  Sometime today, my tablet will be delivered to me.  The online thing said they'd fixed the LCD screen.  Now as long as there's nothing else wrong with it, I should be back to full functionality in a couple days.  (I have a lot of catchup to do on notifications, RSSes, and other things, otherwise the catchup would be immediate, I guess.)

I'm really looking forward to having it back.  I had to drive somewhere new yesterday and it was a lot more stressful than it should have been, even for a trip as simple as it was.  The address was quite literally north on the nearest major street...  but trying to find the address when not all houses bother listing their house numbers...while people behind you get very impatient and upset because you're driving around rush hour...  Ugh. 

LENS is still going, one site a week.  At this point it's probably safe to say it's going in maintenance mode, rather than active treatment mode.  Or at least that's the sense I'm getting from the doctor.  She's somewhat reserved on some things, so as to allow the people in her care the most personal choice without bias.  It's generally a good thing, but it's kind of frustrating on occasion.  I like straightforward answers and she doesn't necessarily give them if she thinks it might impede proper decision making.  Still much better than the alternative: a doctor that doesn't care what you want and overrides your opinions with their professional one. 

My illness seems to have more or less cleared up.  I checked with my doctor: apparently these things can stick around for weeks without actually being pneumonia or something awful.  And the fact that my life has been filled with stress, chronically, means this sort of thing is likely to happen more in the future.  Now there's an argument for de-stressing! 

Speaking of de-stressing, Chris and I will probably be taking more walks if my tablet works again, and more bike rides.  The fastest way to hatch eggs in Pokemon GO is to go for a bike ride, and we both have bikes.  But also, there's a few good places to go walking for Pokemon GO near Chris' work, so we could pack lunches or grab something quick and then go walking there.  I'm looking forward to the exercise and the together time. 

In the meantime, I'm trying to re-add vitamin B supplements into my routine...  I've previously had really unpleasant experiences with vitamin B, but this stuff is formulated to be both effective and yet not give you burps of "flavor."  The word is in quotes because vitamin B powder is one of the most horrid substances I've ever tasted.  Which may explain my extreme reluctance to try it again.  That, and the fact that there's already two doses of vitamin B in my diet due to the multivitamin and the zinc...

But B vitamin deficiency is a known issue in some people with autism, and I already paid for the bottle, so... SCIENCE!  Also, no ill effects thus far. 

Friday, August 5, 2016

Book Review- Understanding Autism: The Essential Guide for Parents

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?"

Tuesday, August 2, 2016

LENS and Life, week of 8/2/16

One site last week.  Despite the four-week break due to the family emergency and then the doctor's vacation, I guess we're not playing catch up yet.  I'm running low on supplements, though, which I'll be able to get more of tomorrow.

An observation regarding LENS' effects...  I was monitoring myself during the various proceedings for my grandmother's death and funeral.  I had, it was safe to say, a very difficult time during the first visit.  But outwardly, it really didn't look it, I think.  If I had to guess, I would guess I mostly looked tired, sad, and maybe bored, rather than "trying not to tear myself apart."

I think the LENS has increased my ability to mask how I'm doing, and possibly my capacity to endure things.

That really can only be a good thing, because the better I can politely smile at random people, the better I'll be able to blend.  It does concern me somewhat, because with increased ability to mask how I'm doing comes increased ability to mask how I'm doing to myself.  I already somewhat abuse that ability to get through life.  Self-deception is a fundamental part of being human.  I try to engage in as little as possible except for excellent causes, such as "not having a meltdown in public," and "if I acknowledged this all the time I would never leave home."  Both worthy causes, I think.

When I say masking things, I'm mainly referring to things like, "how loud and sharp noises are," "how much anxiety it causes me to be out and amongst people I don't know," and "how difficult interaction is, even when you've set your own brain up to be a prediction machine."  A lot of my ability to cope with a rather hostile world is tied into my ability to ignore my own distress.  Somewhere less than a quarter mile away, there's a service or construction vehicle that insists on making that high pitched beeping sound for minutes at a time.  But I don't focus on that, and try to ignore it, because if I don't do that, I won't get any writing done and then I'll feel bad about having a late entry.

The same principle goes for most interaction with strangers, getting stabbed in the eyes by bright sunlight, and even some anxiety-inducing activities.

Philosophically, this principle of self-deception is kind of worrying to me.  But from a functional standpoint, it's my very best option.  Focusing on all the aspects of life that hurt/stress/frustrate me just makes those things worse.  Ignoring them doesn't make them better, but it makes them more tolerable.

This week I get to care for a birdlet again.  One of the largest gaming conventions in the US is nigh, and my friends are going but I'm not.  Therefore their parrotlet needs a quiet and supportive place to be, and that place is my apartment.  Normally my pet care services are restricted to cats and dogs, but since these are friends, I make the exception.  And in truth, he's not that hard to care for, it's just tricky because my apartment is not bird-proofed and sometimes he can fly.  Good thing he's cute.