Thursday, January 26, 2012

Great Entertainment, Poor Reality

The new drama Touch starring Kiefer Sutherland is about a boy who, although autistic, has the ability to manipulate numbers, see patterns, and appears to be able to predict the future.

This makes for great entertainment but exacerbates the stereotypes of autism and autism reality.  At least the boy is non-verbal - this is a rarity in depiction of autism although it will be interesting to see how they get him to communicate.

When we first found out A has autism, we ourselves thought this meant she would have an extraordinary gift in some area.  This is called savantism, and it is actually very rare.  

Jacob, the protagonist, is actually a prodigious savant.  The different between regular savants and prodigious savants is that prodigious savants have a skill that would be considered unusually amazing even in a person without developmental disability.  This condition is even rarer (in the above article, 50 people in the whole world).

Good entertainment, but bad for educating others about autism reality.  I don't suppose people really want to watch Fly Away anyway.  Too bad - that is much closer to reality.


Much Ado About the DSM-5

There has been much discussion lately, both in the blog-sphere and in some on-line news feeds about the upcoming changes to the Diagnostic and Statistical Manual Revision 5 (DSM5).  This guide, produced by the American Psychological Association, is used to diagnose disorders that are primarily behavioural, or that have no known cause with specific diagnostic tests.  There is no known blood test for depression, for example - you have it if you exhibit certain behaviours in a specific way.

Autism is defined in the DSM5, and the definition is changing.  Currently, Autism Spectrum Disorder refers to any one of three conditions:  "classic" autism, PDD-NOS, and Asperger's Syndrome.  A good definition of autism and PDD-NOS is here and it gives good examples for the uninitiated.

With Asperger's Syndrome, cognitive and language development, as well as daily living skills, are unimpaired.  With Asperger's Syndrome, the primary deficit is language as it is used for social purposes.  This includes social spoken language and non-verbal cues.  Asperger's Syndrome also includes repetitive behaviours but these tend more toward intensive interests or routines with no function rather than stereotypies (it is more likely you will see a child obsessed with dinosaurs and needs to go home a certain way over hand flapping, for example).

This triad of disorders is well established and most autism services are based on these diagnoses.  The DSM5 purports to eliminate these three disorders and replace it with a single diagnosis:   Autism Spectrum Disorder.

This new label has many concerned because it may cause several people who presently have autism to fall off the spectrum into a new diagnostic category.  This isn't a bad thing in itself, except that once identified with a condition, it is difficult to let that go when nothing has changed except the DSM manual.  Further, and more importantly, legislation is notoriously slow in catching up with realities and services will be denied to people who previously would be eligible.

Concern has come in the media not surprisingly from people concerned with the higher functioning end of the spectrum (Asperger's and PDD-NOS).  These individuals may revert to Social Communication Disorder if they lack many repetitive behaviours, whereas before it would have been autism.

Concern has also come from the more silent side of the spectrum, people who have autistic disorder but also intellectual disability, which comprises a sizable portion of the people with full blown autism.  Because of the phrase that ASD "cannot be accounted for by general developmental delays", there is concern people with autistic disorder will revert to Intellectual Development Disorder.

The authors of the DSM-5 believe these changes will enhance the specificity of the diagnosis.  I don't disagree, but concern is primarily around (a) identification with a disorder and (b) services associated with a disorder.

One might think the easiest way to solve this problem is just to extend current autism services to those now qualifying for social communication disorder (SCD) or intellectual development disorder (IDD).  The problem with this, of course, is that by re-classifying autism and spreading existing ASD over these broader categories is that there will be many people with SCD and IDD who were never diagnosed with autism and legislators will be loath to increase costs by increasing services for now what is a much larger group of people.  SCD is a new diagnosis and appears to be designed to catch people who fall out of ASD so at least they have "some label".

This will put enormous pressure on clinicians to give an ASD diagnosis when SCD or IDD is warranted, especially when an ASD diagnosis was indicated on the DSM-IV.  In short, the muddy waters will be worse than before.

Personally I feel the better approach would have been to combine autistic disorder with PDD-NOS as "Autism" and leave Asperger's Syndrome alone, combining the two under "Autism Spectrum Disorder".  It is grossly unfair to millions of people who presently have autism to be re-classified as IDD alone.  Similarly, I sympathesize with people who have supports with Asperger's Syndrome but now do not with SCD.

I think A will remain diagnostically ASD, but now that language impairment is removed from the autism criteria as well, she would have co-morbid Language Impairment as defined by the DSM-5.

Watch for a little chaos in 2013.  

Monday, January 16, 2012

What is your life worth?

I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link.  But in this case, I will make an exception because it is so important it deserves an exception.

Amelia is a little girl with Wolf-Hirsch-horn syndrome.  You can read her story here.

The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage.  The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded".  I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.

Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population.  By definition, 2% of the population is always mentally retarded.  We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded".  In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!

The doctor's response was bad enough, but the social worker's response was even more appalling.  She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.

Really?  That's the value we put on a life?  What a slippery slope we have started.  Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker.  In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life?  It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people.  Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway?  You're 65!

If anyone spouted off this nonsense they would be laughed off or lynched with extreme prejudice.  But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.

Wednesday, January 11, 2012

New beginnings

Every day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be.”

"Today's decisions are tomorrow's realities."
- Marsha Petri Sue

As we enter 2012, I am trying to keep Marsha's words in mind.  Our long-time senior therapist has resigned to pursue a career at the local regional provider and we are adjusting to the change.

One of the traps I am trying to avoid is "have we done enough?"  Years from now, like many parents, I will look back and ask if we did enough intervention with A to try to ameliorate her autism.  The harder we work now, the easier later will become.

Parents of a newly diagnosed child desperately seek a way to help their child "recover" from autism, a loaded phrase, but essentially a phrase meaning their child achieves average functioning in most areas.  The success of many children is still a minority - very few children meet this milestone.  I am learning to focus less on recovery as a goal and instead look at how far we have come, and how far A has come relative to most others with autism.

Perhaps my biggest disappointment is A's inability to develop functional spoken language, despite trying everything.  She has some words, but her articulation is very unclear.  She is able to communicate well with her iPad and for this I am very thankful, but it is still not the same.  In fact, I have had people comment that if not for the iPad they might have trouble detecting her autism as easily.

Looking back, I have to be content that we did everything "right", and the present reality is best outcome for us...
  • She was diagnosed at 22 months
  • ABA began at 22 months
  • Funded EIBI began at 30 months
  • Tried PROMPT, intensive speech therapy for hours
So as we begin a new year, I'm trying to look forward with this in mind - thinking about what might have been is useless.  We have to look to the future and measure A's future progress against her present ability instead of grasping at recovery.