Thursday, December 26, 2013

Splitting the Spectrum

Recent changes in how autism is diagnosed have supposedly removed ambiguity about what autism is and what it isn't.  However, this to the benefit of clinicians (people diagnosing and treating autism), and not so much for the benefit of people impacted by autism and for the general public.

The previously separate autism spectrum disorders - autism, PDD-NOS, and Asperger Syndrome have been folded into "Autism Spectrum Disorder", or ASD.  Most people still use the term "autism" and "ASD" interchangeably, even though autism used to refer to classic autism, as defined by Leo Kanner.

So perhaps this made it easier for clinicians to diagnose autism... but it has made it harder for people living with it each day to get the supports they need.  The spectrum has become so wide it is meaningless, from the very capable to the very disabled.

People like Suzanne Wright of Autism Speaks who work to advocate for those with autism (and admittedly at the severe more disabled end of the spectrum) are slammed by many people who have autism (as it is defined now). 

The gulf has become too wide.  Parents with high functioning children towards the old Asperger Syndrome definition may be fretting about Johnny's difficulty making friends, whereas parents of low functioning children may be fretting about when their kid is going to get too big for them to handle when they become aggressive.  These two ends of the spectrum are so different - they present with such different problems that they are incompatible. 

Some people may argue that the low functioning end of the spectrum includes those with intellectual disability, and that is true.  But the high functioning end includes those with anxiety disorders and other problems too.

We can't keep classifying the low and high ends of the spectrum using cognitive ability as our measuring stick.  Intelligence in autism is very difficult to measure due to scatter in ability.  Instead of trying to roll up autism into one package with co-morbid conditions, why not recognize the reality that those who have huge difficulties with day to day living just don't have the same "autism" as those who do not?

I would like to see two autism definitions, perhaps "autism" and "Asperger Syndrome".  The key difference between these two diagnoses should be level of functioning across all areas outside of just social skills and social communication, IQ being irrelevant (I'd argue a person who has a high IQ but still cannot wipe their butt at age 18 is still as disabled as someone with a low IQ).

The high functioning "autism is a difference" crowd can go on with their mantra but under a different name.  Autism Speaks can "speak" for the low functioning crowd who have very severe difficulties living day to day.  There's just not enough in common to keep the spectrum together.  It's time to split it up and recognize the reality of what autism is.

Thursday, December 12, 2013

It's Been a Long, Long While...

It's been a long, long while since I've posted on here.  Why?  Well, if you haven't been around, you might see something different.  Or check out the logo above.

What happened?

We moved.  Far.  Thousands of kilometres, in fact. 

You might think me crazy to uproot the entire family and move to the other side of the country... but hear me out, then you might change your mind.

I posted quite some time ago about the end of early intervention for A.

In that post, I asked... what to do?  Well, we figured it out.  We left.  We followed the services... and there are many to be had in Alberta.

Let's start with A.  Once IBI ends in Ontario, there is very little in the way of supports.  Yes, you can get the ABA program in Ontario now, but they are barred from entering the schools and there are waiting lists.  The quality of service is quite variable and the treatment protocol is indirect; it is a consultative service mostly geared to help parents cope.  Supports in the schools are even worse.  Every school board has its own policies in terms of what placements are available (and even when offered they may be full).  Boards have "specialists" but you're lucky if your kid's teacher gets a consult once a year let alone direct service.  In short, it sucks.  Life after IBI is not so good if after it's done, your kid still needs a lot of help.

Let's begin with schooling.  Ontario schools do a very poor job of educating kids with ASD.  Yes, there are some schools and some teachers and some principals who really do try, but they have no training (a weekend workshop on autism does not an expert make), and staffing levels can change at a moment's notice.  The biggest issue in Ontario is that special education grants go to the school board and there is no accountability in how that money is spent.

There are private school options in Ontario if you live in Toronto or Ottawa.  Tuition cost?  $56,000 per year.  Not affordable by a long shot.  What about in Calgary?  Yes, there is, and good news, it's $12,000 per year.  How is this possible?  One very important reason.  Alberta funds private schools and not only that, special education grants are tied to the student and go directly to the school in which they attend.  How about that?  What a logical idea.  The money that the government allocates for my kid is ... spent on my kid.  Neat.

Moving onto T on the school front.  In Ontario T would have half-time junior kindergarten (with us not living in a designated area for full day yet) in a classroom with 25 kids with zero support.  Here, T gets to attend a specialized pre-school with 10 kids, a teacher's aide, and a speech pathologist or occupational therapist in the room all the time.  No, not a once a year consult, but like direct therapy because these therapists are on staff at the school.  Not the board.  The school.  And we pay nothing for this, because guess what?  The school gets a grant for T and yet again, it's used to educate him.  Huh.

What about other supports?  There's lots:

  • Respite supports so Mom and I can go out on dates or have time to ourselves.
  • Overnight help for A when her sleeping is sucking.
  • Community support to allow A and T to enjoy things typical kids do like swimming lessons or classes.
  • Direct speech language, occupational and physiotherapy to help the kids development.
  • Board Certified Behaviour Analyst to work with before mentioned team to work on behavioural issues and general learning.
  • Support to hire one-on-one aides to work with the kids on skills.

There's no waiting list.  There's no bloated government bureaucracy that controls the funds or provides services at stupidly high rates when the private sector could do it more efficiently.  It's all about parent choice.

Still wondering why we moved?  We're not.  Well, maybe when it's -30 degrees outside.  But otherwise, not so much!