What's in those DSM revisions? in 'functioning levels'? in that big box Jim got?

I'm pleased to report that we made it through an unexpected Snow Day 2 with only:

• a 4.55am wake-up
• 1 instance of dishes-throwing, coupled with 1 instance of kitchen clean-up
• 1 "neurological storm" lasting all of 15 minutes
• 4 walks, with about a third of each walk going through a field where the snow is icy and a foot deep

And a few too many cupcakes, or at least their frosting'd parts.

I always factor in at least one "squall" when there's such a huge shattering of Charlie's established order of things like a snow day. The excitement with which my own (college) students greet snow days is pretty much the inverse of what Charlie feels about them. He'd rather have days "on" rather than "off"; rather stick to plodding routine, than the little zap of getting to know "I get to sleep in today!". It's rather anxiety that courses through Charlie, finding himself faced with a Wednesday and Thursday in which what he has to do with himself isn't the usual, established order of things; in which he finds himself not in the large environs of his school with his teachers and therapists, but in the smaller rooms of our house and with---us.

Anxiety, difficulty with changes in routine to the point that one is all but incapacitated, similar difficulties with interactions with other people: I can't think of one parent of an autistic child whom we've met who has not referred to these. My understanding of autism is, of course, from a parent's perspective but I've noted these same concerns often referred to in writings by autistic authors and self-advocates. 

These are some of the reasons why I'm inclined to think of autism as a spectrum, and why I don't think collapsing Asperger's Syndrome and, too, PDD-NOS, into "autism spectrum disorder" is a bad idea. Not everyone thinks that these changes in the DSM are for the better. I suspect I'd see this whole issue differently if I were, like Emily or Mir Kamin at Blogher, the mother of a child with Asperger's. Kamin writes that Asperger's is a "subset of high-functioning autism typically characterized by social awkwardness and repetitive interests." But as Roy Richard Grinker writes in a February 10th New York Times op-ed, terms like "high-functioning" and "low-functioning" are not exactly set in stone.

When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.

......

Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. .........Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

More often than not, when I read about children with an Asperger's diagnosis or talk to said children's parents, I see more commonalities than differences. Certainly, children with an Asperger's diagnosis can talk more than Charlie, often are able to do academic work at their grade level, don't have (as far as I know) the really difficult behaviors---SIBs---that Charlie has at his most upset moments. Charlie's scores on I.Q. tests are below average; his minimal language makes it difficult to discern how much he truly knows and certainly for him to communicate all that he knows to us. But regardless of whether I'm reading about Temple Grandin or John Elder Robinson, I see patterns of similarity with Charlie and his way of looking at the world, and the particular challenges he faces. 

But---and I know I'm on rather shaky ground to assert this as I am after all Charlie's mother---Charlie is clearly intelligent, as you'll note if you spend sufficient time with him and are willing to allow that not being able to talk much, or to read, or to be studying any school subjects at your grade level, are prerequisites for "intelligence." Nothing much gets past Charlie: He notices everything and we're more likely than not to overlook this, as he does not communicate such. Jim and I both suspect he can read more than he shows he can when asked.

I'm not trying to say that there's anything savant-ish about Charlie or that "locked deep within" is a genius just dying to break out. But terms like "impairment" and "functioning levels" are more relative than we tend to think and, unless we see them as such, we might not allow ourselves to imagine how those who seem to have so many limits can be capable of much, much more; can indeed do much, much more.

All of which brings me to the newest pursuit we've introduced Charlie to: The bass guitar. One rainy Sunday a few weekends back, Jim went into a Guitar Center and exited with a huge box that contained Bass Guitar Kit 101. We've now added the bass and an amp to our home music center (which also includes a piano, my very out of tune viola, a few drums including a conga, and a fish tambourine). It's been a couple of years since Charlie learned to play some piano and cello, and to read some simple sheet music that had been individually written just for him. We had to put aside the cello when getting Charlie music lessons at the public middle school proved pretty much impossible. Practicing the piano was becoming such a chore for Charlie that I felt it best to let it go, lest "piano" become altogether aversive to Charlie. 

Jim had introduced Charlie to Jimi Hendrix and the full gamut of classic rock 'n' roll a couple of years ago and, after hearing about Jet Fuel Only, two of whose members are brothers on the spectrum, Jim starting think Charlie should learn bass. Jim played drums in a garage band in high school, but, with neither of us knowing how to play bass, this particular plan was left hanging for some years. Then someone told Jim that learning the electric bass, at least the basics, can be a fairly simple affair and getting the bass + amp was certainly not a big challenge. Last night was the second time I tuned the bass with the electric tuner (so much easier than trying to tune my viola, may I assure you) and then Jim placed the strap round Charlie's neck.

He'd just come in the house after a walk after said neurological storm. Somehow we thought touching the heavy metal strings and hearing their low sound and feeling the vibrations would appeal to Charlie.  And we were right, and now, in between the PBS kid-stuff, I've been showing Charlie videos on "how to play bass" and "play along with 'Every Breath You Take.'" 

I'm ok if Charlie doesn't get too far with this (third) instrument or plays in a band (we don't have a garage anyways and "cluttered" would be a euphemism if applied to our basement), but nothing like---here comes the pun,  you knew it---feeling those vibrations, especially when they're good.

 

Comments

[emma]

What a great idea! I think Dimitri would like the low sounds and vibrations too (so do I).

I am totally unmusical (I think I may be tone deaf?), but my brother-in-law has a host of drums and guitars. As they live downstairs Dimitri has appropriated a couple of conga drums and will often pick up a guitar when we visit (and try to take it with him:))

Charlie looks very sensitive about his hands when handling the guitar?

[Laurentius Rex]

There is so much bull being talked about this.

It is becoming quite predictable as to who is against it and why.

It is usually because people have so much emotional investment in keeping the status quo and little to do with objectivity.

I hope that the DSM committee stays with the science and does not back down due to popular pressure.

[Kristina Chew]

@Laurentius Rex,
agree and liked much the title of your post that there's nothing new under the sun with the changes.

@Emma,
I am hoping we might go a little further with this new instrument but we'll see! Would love to have someone nearby for Charlie to hear playing! Yes, I think he was really attending to the feel of the strings---he was like that with the cello (he liked plucking the strings of that instrument best).

Yes I do think h

[farmwifetwo]

Roy Grinker is NOT an autism specialist.. he's an Anthropologist... just b/c he has a kid on the spectrum doesn't make him any more a specialist than I am.

The self dx'd crowd.. those with quirks and a social need to "belong" to a "cutsie club" will be annoyed. Those that keep pedalling Asperger's as the "brains" of the spectrum, those that don't need the diagnosis to survive... will be annoyed. Those that need services, will probably be pleased. Pleased that with "autism" as the dx they will probably qualify for services instead of the "well he has Asperger's so he doesn't really need help" stigma the "it's a cutsie club" crowd have created using that dx.

Unfortunately, the "systems" going to slash services based on their criteria. If you are not visually or communicative autistic... you won't get any. If you are like us and had a mild PDD dx and then a "speech and language delay with global delays" the systems going to tell you "it's just a learning disability" and been there, done that... you're SOL...

The child psych changed little boys from PDD to Autistic disorder this past summer. The eldest reads "a mild form of ASD" and the system knows I'm not having him re-dx'd even though he "passes for normal" b/c if I do... the LD's, PPM 140 (social and behaviour) and the OT... are gone.

I'm covering my a$$$... If I had a child currently with Asperger's who desperately needed services... I'd be working to get it changed to atleast "a mild form of ASD", before the changes go through.

[Rose]

Charlie has beautiful hands. I'm kinda into noticing hands, next to faces they tell so much.

Charlie's innate intelligence reminds me that MR is not a part of Autism. Ben has dyscalculia and dysgraphia. No amount of wishing makes them go away, nor any amount of "therapy" or work. It ain't gonna happen, so we look to other areas.

Charlies unique wiring doesn't discount his intelligence. How lucky he is to have a mom who believes in him!

[Brenda (mamabegood)]

We bought a keyboard for our son because he really enjoyed playing it at the OT. However, his enjoyment of it lasted only a few days. The guitar idea is brilliant: so many of our kids are attracted to vibration. Esp. electric and one that's not going to blast your ears out either. Had someone suggest to me: If your child doesn't like to produce music, but loves music, maybe he would enjoy watching others produce? Like in small practice rooms?

[Linda]

Charlie has beautiful long fingers and that SMILE!
Yea for music and yea for Charlie (and double yea for no more snow).

[mumkeepingsane]

We got Patrick an accoustic guitar last year and it's definately been slow going. Mostly because I'm having to learn how to play as I'm teaching Patrick. Also, I'm finding time a factor. He's so busy! I've always wanted to play the cello (I'm a flautist) and I think I might start taking lessons next year. Perhaps Patrick will learn as well. I hope Charlie has fun with the bass.

[Laurentius Rex]

I catch a long fingers reference there.

That is often held to be a musicians trait,
Mine are quite long too, which is handy for the flute.

http://www.larry-arnold.net/Autobiog/Selfpix/80img2.jpg

Though I have never seen longer than those of virtuoso uillean piper Seamus Ennis.

http://www.loc.gov/folklife/lomax/britain/images/SeamusEnnis.jpg

Did he have Marfan's I wonder?

[Laurentius Rex]

Yes Farmwife2 Roy Grinker is not a specialist in the medical sense, however he is academically trained in methodology, and though I have bones to pick with him too I have to say that his overview of the cultural position of autism is spot on.

What counts as an expert in autism anyway? by the time I get my doctorate I hope I would pass muster considering that the topic of my study actually is autism, even if I do come from a sociological perspective myself, it does not disqualify me from studying such topics as cognitive neuroloscience and neurology when it is pertinent to my research, nor has that disqualified Dr Grinker from doing the same.

Science and Medicine does not exist in a vacuum, and the DSM is a cultural document, ask why it only exists in the USA, and why there are different diagnostic schedules elsewhere, it has a lot to do with the differing cultural practice of medicine and political economies of those respective countries.

You go to IMFAR even and you will see there are a lot different perspectives.

Science in its broadest sense is about being able to reject your own "folk" observations in favour of empirical experimentation, being able to take a wider perspective and to do proper statistical analysis, all things which Dr Grinker is familiar with and a lot more.

Before you dismiss anthropology as a methodology out of hand I suggest you actually bother to familiarise yourself with the paradigms of that academic field so you can criticise from an informed position.

[Regina]

Not to put too fine a point on it, one might review the entirety of the initial draft revision before throwing the baby out with the bathwater. Autism is not the only condition addressed.

And they are taking comments AND doing field test before the release...in 2013.

There is also the coordination with the ICD-11 revision and Medicare/Medicaid adoption of ICD-10 in 2013, as well as how a state individually determines classification according for purposes of IDEA (not all states reference the DSM).

So while this is big news at the moment, there's a little timeline since this is not the final product and a fair number of dependencies on practical application.

[Leila]

Hi Kristina, Charlie looks really happy strumming that guitar!

I agree with you about the DSM changes. The social skills impairments, emotional outburts, OCD and other symptoms that even very verbal, high-IQ children with Asperger's or PDD-NOS present can be very challenging, and in the end we're all on the same boat.

[Elise]

I also wrote a blogpost about the DSM change but unlike some parents whose children have aspgergers I think it is a good thing.BTW I also posted my blog on Blgoher. Anyway here is the url http://asd2mom.spaces.live.com

THe guitar is great. Music is joy and being able to bring joy into your world at your own behest is freedom.

[Kristina Chew]

Marfan's, I have wondered about it. Now that Charlie is no longer taking Risperdal he has become quite lean, like his dad, and I've no idea how tall he (Charlie) is going to get at the rate he's been growing.

Thanks for the link, Elise! We tried Charlie on an acoustic guitar a few years back and he was really into it. Problem was, the wood was not very durable and Charlie---perhaps wanting to get a better feel for the vibrations?---knelt on it, with predictable results. The bass is made of metal, far heavier, but so far, much sturdier seeming!

We still have a keyboard---Charlie used to practice on it and the piano, alternating. Keyboard's in the basement now as we 'just' have the piano, an upright we've dragged around to three different states (two in the Midwest).

I'm grateful to Professor Grinker for bringing more attention to how culture and cultural attitudes (conscious and unconscious) shape our understanding of what we call "autism." The DSM isn't something set in stone, but a document (a text) requiring interpretation (which we're all doing, whether consciously or unconsciously).

And as Regina notes, what's been put out is a draft, and the APA is seeking comments.

[Emily]

No, I don't see it differently from you. I'm always interested in how much I see of TH in what you describe about Charlie even though their autism manifests so differently in other ways. That thing about structure, the days being the same? TH all the way. So much I could list here that you describe that makes me think of my own son. It makes more sense to me not to do artificial subdivisions of autism. As I noted in one of my posts on this new structure, TH on some days is more classically autistic than on other days.

I'm intrigued about the Marfan's thing b/c of TH's hypermobility and extraordinary height...but, his father's family are all quite tall. And Marfan's comes with some deficits, such as heart issues. I don't know of any of that in either of our families.

[Emily]

I think we just cross-posted at each other's blogs. :-)

[Accidental Expert]

I like your post. Lots of good things to consider. My son is diagnosed with Asperger's but I have always thought of it as part of the autism spectrum. Its just a matter of degrees.

I'm not putting too much stock in the labels. They help us understand general themes, but each child is so unique, each person really needs to find their own way.

[susan senator]

Wow. There is so much here I don't know where to begin! But what I often think when I read about Charley is how familiar he feels to me. Or you -- and I only met you once, briefly. But I guess what I'm getting at is that just as these waves of deja vu or something come over you when you read about John Robison or watch Temple Grandin (in cinematic or real time), that is how I feel when I read about Charley. The feeling that he's really truly there but that you can't always find him yourself, and also the feeling that he doesn't have to be Einstein-locked-away-within-himself to have infinite value to us all. I'm blathering on but I'm feeling close to tears somehow over this post.

[Bonnie Sayers (autismfamily)]

I tried to talk Nick into a guitar for his 15th bday next month, but does not want one. My brother played and was in a high school band.

Some think Nick has Aspergers and I have to explain he was nonverbal through age 3 1/2.

[mamacate]

I'm catching up after a (cold) vacation in Florida. Count my son as an AS kid with high intelligence (verbal > 99th ptle; only stops talking when asked a question that requires an answer) who has "problem behaviors" (and has them in spades, limiting his participation in the community significantly). So yes, many more similarities than differences, I think.

I can't say I oppose the DSM change. I don't think it's much of an improvement, though. I'm just worried that we will again have to go through the intense rigmarole, which involved traveling from our semi-rural area to a big city to find people who knew enough about AS to diagnose him accurately all over again. I worry that it will interrupt his eligibility for services, and that it will start a new fight with the school. My worries are very much not about the validity and accuracy of the DSM, they're about a human being getting help. I'm not sure that is aligned with the goal of the DSM.