The Long-Awaited Gameboy Post!

Okay, folks, here it is. I've been waiting to do this one since this blog started.

Picture this: You are taking your child on the spectrum to a fancy restaurant. Or maybe to a wedding, or a graduation ceremony. Maybe it's a plane ride, or a train. Or the birthday party of that distant relative you never see. Or hey, maybe it's just a trip to the grandma they love, but it's still going to be a long trip and there's not a lot for kids to do there. Whatever the reason, you and your child will be in an environment where they are expected to sit still and be quiet and well-behaved. This sort of thing is difficult for any younger child, of course, but for a child on the autism spectrum it is probably even more difficult and can last even longer. Fortunately, your child likes a quiet, individual activity like video games, but they're supposed to pay attention! It's not socially acceptable!

WHAT DO YOU DO?

Simple.

GIVE.
THE.
KID.
THE.
GAMEBOY.

It doesn't matter that this is seen as socially unacceptable, because either way you're stuck. Either your child is going to try and stay still as long as possible after long prompting to "behave", fail, get really antsy and act out, prompting The Look, or they can have something that will keep them occupied for a few hours and QUIET. Autistic children do not tend to understand the whole "social norm" thing the way neurotypical people do, which makes it even harder to follow them with things like, say, eye contact. If they're directly addressed, you can ask them to respond, but it's amazing how much we can pay attention to while focusing on something else (I'm typing this while following the Olympics). Some of these situations, you can't normally expect the kid to be paying attention anyway. Weddings tend to be long, boring affairs. That's why kids tend to be either herded to a day care room or not invited. No one's going to be looking down the aisles to make sure everyone's paying rapt attention. If it's a visit with family or friends, it's better to explain than try and someone to behave in ways they have no idea how to.

Here's the thing: EVERYONE fidgets. Maybe they doodle, or fiddle with jewelry, or play with a piece of paper, or tap their foot. It gets annoying sometimes, sure. but everyone does it, yourself included. You might not even notice it. But playing video games or reading a book at the table can serve as just another type of fidget, and it's a much less intrusive one than others. Let them have the thing, and you'll have much more time to enjoy whatever you're doing instead of doing damage control or having to put up with "But I'm boooored~!"

A couple notes here, though:

- First, I used the phrase "Gameboy", but anything can work. I have my actual 3DS out a lot of the time, but a book or game on a smart phone or pack of crayons and some paper all work equally well. And yeah, there are other handheld game devices, I know the names of most of them, but I figure most people reading this blog wouldn't.
- Two exceptions to this rule: Stage shows and movies. The darkness makes it difficult to draw and nigh-impossible to read, and it is both VERY obvious and problematic to have a backlit device out. A lot of them mess with stage sound systems, and depending on the license it's usually illegal to take pictures or video of the event, and ushers are trained to go after any possible interference they see. If you don't think they can handle movies, don't push it.
- Keep a pack of crayons in your purse or pocket anyway. It helps.
- You want the volume down. Tell them this if they won't keep it turned off anyway, or invest in headphones. Depending on the environment, you might want them anyway. You can pick up a pair at the dollar store.
- If you're raising a small gamer, check the ratings before buying. It's not rated "M" for "Mommy", and while not all games are incredibly violent, they aren't all child-appropriate, either. Like movies, use discretion. I'd also recommend review websites if you're buying them yourself to avoid getting a badly glitchy game.
- Used books are good if they don't trigger an allergic reaction. Used games are just as useful- GameStop allows you to trade in old games and buy less-expensive used ones, and GameFly is essentially Netflix for video games.
- Also, Pokemon. It gets special mention here because it is created by a guy with Asperger's Syndrome, and because of that is somewhat uniquely tapped into that whole completist, collector mentality. It is fun, but beware: IT IS INCREDIBLY ADDICTIVE. You might be able to get them to put it down, but you will probably never get rid of the thing completely. And you will hear a LOT about it.
- Sometimes, there will be noise. Sometimes, it just won't work. Know when to take them outside for a bit before it ends in tragedy.

Spectrum Siblings

Today is my son's 15th birthday, so it seems a good time to talk about the special place that neurotypical siblings have in the lives of people on the spectrum.  And by the way - don't believe a thing either of my children says about this issue - they will tell you they don't like each other but  I know the truth.  My reflections will touch on a variety of spots on the spectrum, as we know people more profoundly impacted than Alexa; but I don't pretend to know what it really feels like to be there and so I'm going to focus more on the Aspie sibling as that's where we live. 

Ben is four years younger than his Aspie sister and as such has given her the opportunity to be "in charge" and to teach him all sorts of things - which cartoons have the best characters, how to play Pokemon on a Gameboy, and how to navigate school and daycare.  I've always found it really touching to see Alexa helping younger kids (she loves them) and Ben was her first "pupil."  Somehow folks forget that as "big" siblings, our kids on the spectrum are role models (often for the better but occasionally to our frustration - think specialized interests) and this is a really nice opportunity for them to shine.  I recall that when we told Ben about Alexa's diagnosis he said "I have Bensberger's Syndrome, right?"  He totally saw the diagnosis as a good thing to emulate, not a detriment, because he wanted to be just like his sister.

It has been interesting to watch Ben grow into his own space in our family.  Even though he's the younger sibling, Ben still exhibits the caring and concern often seen in siblings of kids who are somehow "different."  He is Alexa's biggest fan and staunchest supporter.  He makes lunch for her when they are together (even though she could do it herself) and he worries about her when she tries her independence.  And he's shown that same care and concern for kids at school who are on the spectrum - he knows first hand how to look out for them. Though he doesn't mention it often, I know that he, like other siblings, thinks about the future and what his sister's life will be like as an adult.  We're fortunate because we all assume Alexa will be able to live an independent life in a family unit of her own.  But Ben will occasionally hint that he thinks about that time - "Yeah, I know I better be the one having the grandchildren because babies scare Alexa," or "Don't worry, I won't let you starve, Alexa." I know of several teenaged siblings of more profoundly impacted people who have spontaneously volunteered to their parents that they will become caregivers when the time comes.  I can't quite imagine what that feeling is like - though I know many parents who make plans so that this conversation doesn't have to happen for real.  It's interesting that one of Ben's friends is also a spectrum sibling (though she is an older sibling of two younger brothers on the spectrum) - they seem to have a bond that comes from sharing what that means.

But I don't want  to paint these siblings as saints - they get frustrated too.  Frustrated because they never get to try out the other back seat as it is permanently "claimed" by an Aspie who needs routine and sameness.  Frustrated because they can't easily change the subject of conversations or spontaneously shift plans.  Or because they can't eat at their favorite restaurant because the texture of the chicken nugget doesn't work for their sibling.  Or can't watch what they want to on TV lest they disrupt the schedule.  For those of you who watch The Big Bang Theory, imagine being Leonard.  It's not always pretty, particularly when both Leonard and Sheldon (not a stated Aspie but a close approximation) are real life children.  It's amazing to me that Ben (and many other spectrum siblings I've known) don't protest more than they do - probably because they don't know anything different.

What might be the most interesting aspect of spectrum siblings is one they likely never know about - the "control group" in the experiment of parenting.  They serve as a yardstick of what "typical" looks like.  Sometimes it is what lets us know there's an area of concern - particularly if the typical sibling is older, a parent is able to recognize that developmental milestones that aren't being met.  Other times they reassure us that our parenting skills aren't so bad: "Gee, Ben just did that with ease, it can't be all my fault." 

Being a spectrum sibling for sure impacts these kids, often in good ways, occasionally in less comfortable ones.  But the amazing thing is how much they love their brothers and sisters, quirks and all.  And that deserves a shout out. 

Greetings from The Beach (from Alexa)

Greetings, people of the Internet! This is Alexa, writing from Ocean City, Maryland! It's probably being POSTED a week later, of course, since this condo doesn't have internet activity, but who cares about semantics? Besides me, anyway. Since we're at the beach, I figured I should talk a bit about vacationing with a child on the spectrum and how to best keep them from going insane.

A. The Beach: Not for Everyone.
My family goes to one beach or another just about every year. It's fun, but honestly, I'm not a huge beach person. I like warm weather, I like the water, and seashell collecting is awesome, but there's one problem- I hate sand. Its ability to get so very, very hot is annoying, yes, but the major problems are tactile - sand does not feel very good, being all irritating and gritty - and the fact that it gets EVERYWHERE, requiring long showers outside with cold water to get the sand out. And it's really annoying if it somehow invades your sandwich. I don't care about the puns, I do not want to eat sand. You don't know where it's been. Also, getting all sunscreened up can be a pretty annoying process, considering the smell and the time and the not liking other people touching you can all come into play. Around the time I hit my teens, I just stopped going with the rest of my family most days and instead spent the time sitting on the condo balcony or in my room or wherever, reading. If your child is younger, though, obviously there may be some problems. But if they're at an age where they can be trusted alone for a while and they REALLY don't want to go, there are plenty of other options while you're there your child can enjoy. A lot of condos and hotels have swimming pools, which have the sun and water without the sand, and there tend to be some attractions geared toward kids at the boardwalk. You don't have to spend the entire day at the beach itself. In fact, considering how long your average sunscreen lasts, you probably don't want to.

B. Give Them The Gameboy.
No matter where you go on vacation, or anywhere else, this one will turn up. I can write an entire blog post about this, and probably will later. If you're doing something that requires children to behave and be quiet, like going out to dinner or sitting through a ceremony or visiting relatives or a long car ride (not socially required, but your sanity will thank you), and you want them to actually be quiet, GIVE THEM A DISTRACTION. If it's actually interesting, an autistic child can focus on playing a video game and the conversation, even if it looks like they're just playing the game. If it's not actually that interesting (like a wedding ceremony or waiting for dinner to be served), no child is going to want to sit through it, so please don't force them. It's better to have the quiet rudeness of the kid playing a game while you're talking than the much less quiet, far more eye-catching rudeness of them getting aggravated and throwing a tantrum or very agitated fidgeting. Now, I say Gameboy, but anything can do, it's just the one that hits the most kids. Crayons and paper work, especially at restaurants (my mom used to carry some in her purse just for that purpose), if your child reads, give them a book, if you can distract them with music, bring in your iPod, the point is that children are not known to like sitting in one spot while someone talks about something boring for long periods of time, and autistic ones are far less likely to know the social cue of "be quiet and wait this entire long boring time" than others. Non-autistic children tend to hate it, too. You're not going to bring a three-year-old to see Twilight and expect them to pay attention. The same rule applies here. (Also, don't bring your kids to see Twilight, there are some REALLY awful messages in that stuff and they got Cronenberg to do the birth scene.)

C. Museums- a Quick Primer.
Here are things kids want to see in museums:
- Dinosaurs
- Space ships, planes, trains, and other cool vehicles.
- Stuff they can actually touch and interact with (Science museums are usually good for this).
- Pirates, ninjas, knights, and items related to them (probably).
- Animals.
- Exhibits you can walk around in (The ship in Air and Space, rainforest exhibits at zoos)
- Sparkly stuff like gemstones, jewelry, and shiny rocks.
- Things related to their specific interests.

Here are things kids DON'T want to see in museums:
- Art (You can't touch it, you can't make it, they aren't gonna care how pretty it is.)
- Random articles of clothing (unless it was owned by a princess or a ninja or a princess ninja, skip it.)
- Furniture (What's the point of a chair you can't even sit in?)
- Papers, books, other random items.
- Buildings (Just don't try and explain architecture to them. If it's not one of those REALLY cool ones, it's not going to be worth more than a minute.)
- Things that are scary (Bugs, graveyards, loud noises, the dark, sharks, large carnivores, caves, things supposedly haunted and mummies are all potential big hitters.)
- Almost ANYTHING that requires staring at for more than a minute or two. They've seen it. It's not moving. Can we move on?
- Things you like. See above.

And so on. You know this stuff already. At museums, you're not allowed to touch anything, have to keep your voice down unless you want to annoy the other visitors, and are supposed to just stare at random objects. It's probably not going to interest kids that much. To make matters worse, you have to walk around at the adults' pace and there's never anywhere to sit down. Zoos also have the added problem of weather- since it's outside, it can be really hot, which will sap their patience even faster, despite the animals being cool. Don't spend five minutes or more on one thing unless everyone in the group's okay with it, don't put an autistic kid in a big group because they WILL end up having a meltdown sooner or later, and save the art and history stuff until they're old enough to get it. Look them up online while you're planning a trip- some art museums have specific activities for kids at certain times, and things with a lot of hands-on exhibits or things kids usually like, such as science museums, are pretty much safe. Battlefields are a special case because they probably have more space to run around and some of the sites are pretty cool-looking, but unless your child's a history fan, they don't want to be lectured and you don't want to lose them.

D. Loud Noise Zones.
These would be amusement parks, crowded condos, and ill-designed museum halls with echoes, among other things. If your child's noise-sensitive, this will be bad. If they're not, but they make a lot of noise, this will be bad for EVERYONE ELSE. Plan accordingly, and see my previous post about fireworks. And remember, large groups of children will be loud.

E. Shopping With The Impatient for Clothing.
No.

The Waiting Room Moms

When Alexa was first diagnosed, lots of people told me I should find a support group.  Her pediatrician even looked up information about local groups and shared it with me.  And as time went on there were variations on the theme “So, what support groups are available?”  I tried our local Asperger’s support group, dropped in from time to time if the monthly topic interested me, and even recommended it to new parents.  But, I have to admit there has always been a part of me that’s said, “Really, I have to squeeze in ANOTHER thing?”

Parents are busy – there are all sorts of demands on the typical parents’ time.  Sports, scouts, and school demands on family time are the topic of many an article or study.  Modern family life seems to mean a hectic rush from dawn to dusk to cram 16 hours of activity into 12 hours of daytime.  Now add to that Social Skills group, Occupational Therapy, and Psychotherapy plus a myriad of specialists appointments.  And try to make sure that your “typical” child has all the opportunities his or her peers have.  And add to that going to a support group so you can learn more and find peers?!? You get the picture.

Enter the “waiting room moms.”  I say moms because, for the most part, it’s the moms who are logging the hours in the waiting room for whatever reason (though the best idea yet came from a dad – more on that at the close of this post).  There is a community that springs up in the waiting rooms of therapists who treat multiple kids on a regular basis (as in, you have a weekly appointment and so do several other families).  I first noticed my community in the OT waiting room, just about the time the book “Rules” came out (it’s a great chapter book about a girl whose brother has autism) with a plot line about the waiting room group.  And I realized there was something special about the waiting room dynamic.

At that time, the OT worked out of her basement.  Her “waiting room” was four chairs, set in pairs that faced each other.  If you were lucky, the chair across from you was empty and you could prop your feet on it.  If you were really really lucky, the chair across from the one next to you was filled with one of your favorite moms.  We identified each other by our kids – Tate’s mom, Brad’s mom, Mallory’s mom, etc. (not real names, by the way).  But we knew each other by the comfort and advice we gave one another.  Like the time Tate’s mom told me she put a snug undershirt under his regular clothes to help make him more comfortable.  Or the time I gave Brad’s mom a tip on summer camps that provide disability support services for no additional cost.

When Rita the OT moved to a “real” office we weren’t sure what would happen – there was so much space, we wouldn’t be forced to speak to each other anymore.  Would those conversations continue?  Particularly with the Tuesday Morning store in the same office complex?  As it turned out, the support group just got bigger.  And we started acknowledging its place in our lives.  One group of moms (the slot just before ours), made sure that they stayed together when the schedule was (re)arranged every 6 months.  My set of moms actually got to know each other’s first names.  And on occasion we’d say “Oh, I’ve been waiting for Wednesday so I could ask you…”  I felt bad when John or my mother in law did OT duty – I suspect they got a few odd looks and I know John was questioned on my whereabouts once.

We also started attracting the occasional scared looking “newbie” parents.  It’s funny, you can’t really say “Clearly your child has autism. Feel free to ask us questions if you are scared.”  But the subtle (or maybe not so subtle) ways those doors were opened always intrigued me.  Sometimes it was as simple as saying “No apologies needed.  Been there, done that, it’ll get better,” to the mom apologizing for her child who is melting down.  Sometimes it was engaging in conversation with the child about their “special interest” and telling them our own kids had that interest when they were younger.  And sometimes the newbie moms just heard us talking and started asking questions.

And then Abby’s dad arrived.  For a couple of months we wondered why he left for a chunk of time during her appointment.  Particularly when we learned they lived an hour away.  Gradually, he got to know “the moms” and eventually he told us where he went – to the bowling alley across the parking lot, to get a beer.  Why hadn’t WE come up with that?!?!  Because really, what we ALL needed, as much or more than chit-chatty support, was “down time.” 

And so began “bowling alley time.”  Somehow, moving those conversations to the bowling alley snack bar made us feel like we were doing something for ourselves.  Sure, we still talked about kids and school and camps and such; but it became a whole different and far more relaxing conversation in that other context.  It felt like we were choosing to do something apart from our kids.  We were getting ourselves out of the “I’m a parent of a kid who needs these services” mode and into “I’m a normal person hanging out in a bowling alley” mode. 

I don’t miss the exhaustion from running to three appointments a week (in addition to after school theatre taxiing and that was just for one of my kids).  But when we stopped going to OT last summer, it wasn’t just the office staff that I felt sad to leave.  I also left my “bowling alley peeps.”  And, crazy as it sounds out of context, it was a big step for me too. 

All of us parenting on the spectrum need a place we can go for information and support.  Sometimes you find it at a formal support group.  Sometimes you find it on the internet.  But if you get lucky, you might just find it in the waiting room or at the bowling alley.

Trained: Who cares how it looks if it manages the noise?!?

So one of the things Alexa has trained me on is how to help her deal with noise.  The Fourth may be one of the more problematic holidays but, as Alexa noted yesterday, it's not the only time noise can be problematic.  Parties and weddings are also trying - too many people talking at once (she can't block it out or focus on only one conversation), loud music, etc.  And as she's taught us how painful it is for her, we've worked to learn how to help her cope and adapt.  Because while avoidance is tempting (and sometimes it makes sense) she can't live her life avoiding it always (nor would she or any of us want that).  She wants to participate in family gatherings and parties, she just doesn't want to experience the physical effects.

So we've learned some coping mechanisms (which I'll note below).  These are not always easy to accept as a parent who doesn't want to call attention to the family (recall The Look).  But they work for her and that's what really matters.  Sometimes we just have to get over it as parents.

1) Earplugs - I carry earplugs for Alexa whenever I think we might be in a situation where the noise will be too much.  I ought to carry them always but I seem to run out or lose them.  The foam ones from the drug store are cheap, disposable, and seem to do a decent enough job.  Alexa has also used the type that band singers use to protect their ears while still hearing the music - thanks to a friend who suggested (and then purchased) them.  See this Amazon link  for more information.  Alexa didn't find them as comfortable but they do allow the sound to be less loud but not muffled.  This is how we have done Disney.  And State Theatre Festival.  And restaurants. And the occasional movie or performance.  Used when she will be in a lot of noise for an extended time and she wants to try to take it in and can't use one of the methods below.

2) Noise cancelling headphones - Alexa has a pair of these that she carries with her when we go to day-long family events or ride in the car and such.  Times when the noise might not be loud but when it is likely that there will be several conversations happening at once.  She uses them when she needs to "tune out" and take a break.

3) Stress balls and stuffed animals - better that she have something small to vent on than that she melt down.  She has a large enough purse that she can fit a small stress thing in it.  Who cares if someone wonders why an adult is carrying a stuffed whatever?

4) Diversions - when all else fails, finding something that she can hyperfocus on and totally remove herself from the rest of the world is what's needed.  And amazingly, when not stressed, she can follow a conversation while reading a book or playing a video game.  It's a stress management mechanism and she has, in fact, grown out of the constant book reading stage.

5) Let the person with ASD have as much control as is appropriate/possible.  No, I am not advocating asking your five year old if they want to try something or not.  But I am advocating giving older children some choices - sometimes they might even be ready to try something before you!  Following the lead of the person with ASD and helping them prepare are key - for instance Alexa is able to go to one of our favorite restaurants because we let her pick her seat and we try to get a booth.  Being seated against the wall with as few tables as possible behind her really makes a difference.  Not saying it doesn't frustrate us if we have to get up to let her out to use the restroom... but we know the drill and are willing to go with it so we can eat there as a family.

6) Explore sensory friendly options - the Autism Society of America publicizes sensory friendly films each month so that families can enjoy them in the theaters and Broadway is even getting into the act  (thanks, Ms. P. for the tip).  And, as Alexa noted yesterday, the Appel family has their own sensory friendly (and legal) fireworks each Fourth.

Fireworks Funness

Oh, hey, I'm back! Sorry about that, folks. Power outages and doctor's appointments kept me offline the last few days. Anyway, since it is the Fourth of July, I figured it was seasonal, so let's talk about fireworks. Specifically, how autistic folks might react to them.

The thing is, sensory processing difficulties can go either way, hyper or hyposensitivity. A hypersensitive person, for instance, might hate loud noises, and could even define loud as "three people, speaking at standard volume, at the same time". I know that from experience. Or they could have trouble if the lighting in a room's too bright, or find clothes incredibly uncomfortable. A hyposensitive one might be really restless and unable to stay still because they need more sensory input. It depends. But as someone who's as a whole pretty hypersensitive, especially to sound, let me tell you something: I don't get fireworks. I mean, yeah, they're pretty lights, but I just heard a great big boom outside and I'm currently on the second floor of my house with the windows closed. They don't last long, they're noisy, and most fireworks-launchings aren't a full-blown Disney spectacle with the explosions synchronized to gorgeous music or anything, making the sound easier to ignore. They're just... kinda pretty. Which is balanced by the fact that they're explosions, one of the most inherently annoying sounds out there (the others include phones ringing and air horns, among others). Not good enough to be worth driving half an hour to see.

My parents learned this and eventually, we stopped going to see fireworks shows, or at least stopped taking me to them. Instead, we just set off some of the smaller ones at home, and I stay inside most July Fourths. If I want to see the colors or anything, then I can watch from the windows and the screen door. It's cooler there, and there are less mosquitoes. It's not that they don't like them, and if I can see them without the sound or with music to balance it, it's fine. But some things just aren't worth putting someone through. Things like the sound of fireworks or a particularly prominent bass beat in a song can be incredibly annoying to me, or even kind of painful. It's not a matter of taste, it's a matter of "this is causing physical discomfort".

Sorry for the negativity there. I think one of the things people don't always get about it is that it is a matter of physical discomfort. You're not behaving this way by choice, it's just that you have to express how uncomfortable you are or vent it somehow. Acting out in such socially unacceptable manners is the best way to describe the sensation that someone's jamming needles in your ears every time the phone rings.

On that cheery note, have a nice evening!

Ignoring "The Look"

Tangentially related note- dental visits are particularly tricky business for people on the spectrum.   Take something most people don't enjoy and feel anxiety about, add in bright lights, strange tastes, unexpected squirts and scrapes and you have the makings of a nightmare.  For the folks on the spectrum as well as those of us with them for the ride.  We have had some interesting dental experiences and have been fortunate to find dentists not only willing to work with my daughter (yes, we had one turn us down) but also willing to do it without sedation and with respect.  So because of this, we typically remind the dental office staff that our daughter is on the spectrum at each visit.  And that reminder served as entree to a bit of a mom mentoring opportunity with one of the dental assistants who has a younger daughter on the spectrum and welcomes support and guidance at work because she feels somewhat in it alone.

I was at the dentist's office today and had lots of time with the dental assistant and our conversation led us to how we have learned to ignore The Look.  The Look is what happens when you are out in public with a person on the spectrum and they behave in a way that doesn't make sense to the neurotypical world (neurotypical is the word often used to refer to people not on the spectrum).  Sometimes it conveys judgment, "What kind of terrible parent are you that you can't control your child?  My children never had public temper tantrums."  Sometimes it conveys pity, "Oh, I'm so sorry you have to deal with someone so uncommunicative." Sometimes it conveys cluelessness, "Hmmm... that child must be one of those slow people because they can't color or write."  And it speaks volumes though not a sound is uttered.

As we chatted about how people don't understand people on the spectrum, we both said "I just don't care what they think anymore."  And this is good, for the most part - we love our kids, we know they have lots of strengths, and we wouldn't trade them for the world.  Whatever triggers the look is usually some coping mechanism or another (e.g., earplugs at Disney - totally smart and those who can't figure that out, well - their loss).  So most of the time I just ignore it and move on.

But here's the thing - by ignoring The Look we miss out on opportunities to educate others.  I'm not advocating always responding to it as some sort of public awareness campaign.  But I do occasionally say "She has autism."  And my daughter occasionally wears an autism button when she thinks she might be in a difficult situation. And that opens up some really interesting opportunities to educate others.  Sometimes that dialog needs to be opened.  And, sometimes we do things that don't make any sense - tolerating outrageously loud music in stores like Abercrombie & Fitch or ignoring people who are smoking in places they shouldn't - and the people on the spectrum are reacting in reasonable ways.  Just not ways that social norms would dictate.  So why should they get The Look?  Maybe we ought to examine that.

Defining the Spectrum (or... Swiss Cheese is Tasty)

Since we've already used the word "spectrum" and this blog is less than 24 hours old, I think a bit of definition might be in order.

Over the last 20 or so years, experts have come to describe autism as a spectrum of disorders rather than a single disorder.  This has been somewhat controversial, in part because it has coincided with a spike in the rate of autism, and there are those who think that the diagnosis has become too much of a catch-all.  In our household, we've taken a pragmatic view - it is easier to say "She has autism," when we get "the look" (which will likely be the topic of another post) than it is to say "She has Asperger's Syndrome," and then ultimately refer to autism anyway when we explain it.  

When Alexa was first officially diagnosed, the psychologist labeled her "High Functioning Autism" and the pediatric neurologist labeled her "Asperger's Syndrome."  So from early in our journey, we saw the distinctions as nuances along a continuum.  With that said, we don't advocate loosey-goosey use of the term.  We understand the spectrum to have a clear set of criterion, similar to the ones proposed for the upcoming Diagnostic and Statistical Manual of Psychiatric Disorders:

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

What I really like about this definition is that it takes into account the individual differences in behavior by its use of "at least two" of four items, "ranging from...to" and such.  Additionally, the DSM-5 accounts for the variation in severity by including examples of how it can look at three different levels.  (For more on this, see the DSM-5 proposed revision.)  

The short version (if you've read this long) is that the spectrum refers not only to the people classically thought of as autistic (like the son in St. Elsewhere or Dustin Hoffman's character in Rainman) to those you might think of as awkward stick-in-the-muds (like Sheldon on Big Bang Theory). When I think of the spectrum, I use Swiss cheese as my analogy.   Some varieties have bigger holes than others; sometimes it's sliced and other times cubed; sometimes you can predict where the holes are and other times they surprise you; but Swiss cheese still has a distinctive flavor regardless of the variety.  People on the spectrum similarly share a distinctive set of traits, though not all are exactly alike.  Just like Swiss cheese, at the root of the autism spectrum are holes in skill development, some you can expect and some that take you by surprise. But I prefer to dwell on this - just like Swiss cheese has substance that many enjoy, there are solid areas of strength in persons on the spectrum - sometimes we just have to acquire that taste.

... And so are we!

So. I'm the daughter she was just talking about. As I recall, I think I found out about my diagnosis when I was ten, and sat in on my first IEP meeting in sixth grade. So you might be wondering, if you're the parent reading this, what it's like to be on the spectrum, compared to being neurotypical.

Well, I'm not sure I can express it fully, simply because brains working different ways mean that
A: Communication is a bit more difficult comparatively (I'm better writing than speaking, but still, it's not perfect), and
B: There are things that seem perfectly normal to me that might not be. For instance, I listen in on conversations a lot of the time if they're in earshot, and sometimes join in. It's not really eavesdropping as such, because I can't really tune them out. Even if, say, I'm in the car with my mom, and she's on the phone while the radio's on, I can't just focus on the radio because I'm listening to both at the same time. Hypersensitivity to sound- it does that. So it's kind of hard to mention everything about the experience, because there are some things I do which I just don't notice and register as abnormal. Everyone fidgets, for instance, but I don't think many people fidget by, say, taking out their 3DS and playing a round or two of Doctor Mario while someone's talking.

But this blog isn't about that, I don't think. It'll come up, of course, but there are other blogs and books and various things online that can explain it, and at least a few can probably do so better than I can. Mainly because if you get paid to speak about being autistic at a conference or something, you'd better be able to do so at least as well as the 19-year-old girl doing so for a summer project who has some experience helping others one-on-one, but that's about it.

Instead, this blog is about the more practical stuff, since it is geared towards parents. As my mom said in the first post, I have, with the help of a large support network, managed to graduate from high school, make it through the ceremony (for the record? Not that fun for a school as large as mine), and live on-campus over an hour away from home for a year. While I never went to a major school dance (I was going to go to prom, but already had an excuse to wear a pretty dress so I went to dinner with my friends and their moms instead), I did attend the Birthday Ball (a sort of equivalent to prom or homecoming) this year, and had a good enough time I'll attend next year. I walked over a mile, alone, to see The Hunger Games while I was at school. They're not as conventionally impressive achievements, but for someone who once got lost walking home from the pool (you have to turn maybe ONCE, younger me!), it's a big step up. I think several people in said support group were more excited to hear I attended the Birthday Ball and even danced with some people I knew there than that I'd finished a semester living on-campus at Washington. At the very least, it was the thing I heard more about. I think part of it was that I'd already lived three weeks on-campus in College Park a couple summers ago, as a test run, and we knew WAC was the right school for me, but going to a dance was a new experience.

The thing about autism is that different goals are going to be easier or harder, just because it affects people differently depending on where they are on the spectrum. The movie thing was probably what I'm most proud of, actually, because I only knew where the place was after seeing it one time while I was in that particular strip mall section, and had to cross traffic intersections at least once or twice. That, and it was more successful than graduation, which I pretty much got through by reading all the way through a book during the ceremony. Some kids might be able to handle it. Some might not. My personal record for sitting in a pep rally if there is any other option is about three minutes, and that's with earplugs. It might be that another kid on the spectrum can sit through them, but is completely unable to walk that far alone without a map near a large road. Who knows? But I can say that these tips helped for me, and I've tried to make them general enough to help as many kids as possible. Hopefully it works.

We're Trainable, and It Can Work Out

Over a year ago, my Aspie graduated from high school.  We'd looked forward to this for a long time - with fear, excitement, hopes and anxieties just like any family. I recall the day her umbilical stump fell off - as I stood crying at the loss of that final thing that connected her to me, my husband told me that I had better get used to letting go. I think his exact words were "If we do our job correctly, she will depend less on us every day." Not what I wanted to hear less than two weeks postpartum, but something that became a mantra over eighteen years.

One thing that made the milestone so special for us, though, is that while parents of neurotypical kids assume that graduation and independence will happen, we were availed of that assumption about ten years ago. When our daughter was diagnosed with Asperger's, she was a tiny withdrawn elementary student who shrieked, hid under desks, bit herself, and pulled her hair. She could not make it through a school day without some sort of meltdown. The professionals who diagnosed her tried to adjust our expectations - she may never have friends, she might not be able to complete a "typical" school curriculum, she may never move away from home. Thankfully we had a healthy skepticism (and a potentially neurotic sense of denial) because we just couldn't see that future for our daughter. She was smart, she was imaginative, she was our perfect little girl - and we would do whatever it took to make things work.

Somehow, we found people who also saw that in her and helped us. We have an incredibly supportive family who are no strangers to the autism spectrum and we got empathy and support from them. We had the resources to assemble a team of disparate folks who showed us a way forward. We had health insurance that paid for private speech, occupational and psychotherapy. We had jobs that provided the financial means to pay for co-pays, advocates and life coaches (plus the flexibility to shuffle hours to accommodate for those appointments). We had a school system that provided the supports our daughter needed, that took a chance on her, and that connected us with some of the most dedicated professionals I've ever met. It takes a web of support to raise a child with special needs, and we had an incredibly strong web.

As we pulled those strands apart to build a new web on Maryland's eastern shore where our daughter goes to college, I am in awe of the difference they've made, the humility with which they receive our thanks, and the commitment reflected in the time they have spent with us. Many tears were shed last summer as the goodbyes were said to that network - the tears themselves demonstrated the strength of those bonds.

So what am I thankful for? How have things worked out?  Well, to name a few:

• My daughter wore three honor cords at graduation - International Thespian Society, National Honor Society, and AP Honors (she took 7 classes and scored four 5s, two 4s and a 3 on her tests). Not only did she earn a diploma, she nailed that high school diploma!
• She actually survived the commencement ceremony (and the tunnel of horror that she waited in before processing). She used all sorts of strategies learned along the way to do something for my husband and I and herself - to deal with noise and crowds and silly ceremony so that we could celebrate her. Her art teacher told an amazing story of her determination, as she pushed through the sensory nightmare to make it to that commencement floor.
• We had an amazing post-commencement gathering full of the people who have loved and supported our daughter along the way. And she enjoyed it, socialized, and shined. I cannot think of a prouder moment than seeing her make the rounds of the over 60 people in attendance, receiving congratulations from friends, teachers and family (many of whom I met for the first time that day).
• She has an amazing group of friends who appreciate her for who she is. The high school theatre family just rocks (and, she would say, they are her second family). When she was cast her in her first role in ninth grade, a connection was borne and a transformation was continued. She has been changed for good, to quote a favorite musical number...
• We have a great family who supported us, cheering our daughter on, providing emotional support even sometimes (often) taxi services.
• My husband and I survived as a couple. There is a reason that the divorce rate is higher among special needs families - it's hard to agree on the zillions of decisions necessary (particularly when you are tired and thankful just to have survived a day). I've had the best partner ever and I'm so thankful we made it through the rough patches.  We will celebrate our 20th anniversary in two weeks.
• I have two fantastic kids. One is the subject of this post - she has an inner strength and determination that astounds me. The other is one of the most caring and understanding young men I've ever known - her brother. He has borne with us as we schlepped to one place or another, has laughed off my neurosis when I turned my worry to him, and has become an advocate for kids like (and including) his sister. Plus, he makes her grilled cheese sandwiches.

My daughter has moved on  to the next stage.  She completed her freshman year at Washington College in Chestertown, Maryland.  She lived on campus, she joined clubs, and she had a typical freshman year (with a few crises added in for good measure). She's got a group of people who support her there - the counseling center personnel, the disability services coordinator, the health center folks, friends she's made, plus my friends in institutional research.

This blog will be a collaborative effort - both my daughter and I will contribute posts.  Our goal is twofold: 1) to share tips and tricks we've learned along the way; and 2) to provide a more hopeful outlook for parents (and kids) than we initially received.

My daughter continues her path toward independence, so we'll likely document that along the way.  But she's accomplished some tough stuff getting to this point, and she has the skills and resources she needs, thanks to the teachers, speech therapists, occupational therapists, psychologists, mentors, etc. along the way. And for them I will be eternally thankful.