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.