Sunday, November 28, 2010

Parental Assessment

The Childhood Autism Rating Scale (CARS) is a common clinical assessment used to determine if a child falls on the autism spectrum.  When we had Alanna initially diagnosed at 22 months, this instrument was used (along with many others) to show she had autistic disorder.

Looking back at the clinician's rating (and ours - both were on the psychological assessment), we rated Alanna 47.  The highest possible score is 60, and severe autism is anything 37 or higher.

We recently did the CARS together and Alanna's score dropped from 47 (our original score) to 37.  This means Alanna (according to us - we are not clinicians) is close to dropping from "severe" to "mild/moderate" (she needs one more 1/2 point to drop to moderate).  We were being conservative so I am pretty confident a psychologist observing Alanna would probably rate in a similar way.  Here's the cool thing... the cut off score is 30.  If Alanna were to drop another 8 points in the next couple of years, she would technically be rated as "not having autism" on this scale.

Now - it's just one scale.  Other scales could still rate Alanna has having autism even if the CARS does not.  The CARS also doesn't speak at all to her intellectual or adaptive functioning.  She could still have serious delays even falling off the spectrum.  Still, it is very positive to see that she appears "less autistic" than she used to.  Now, don't get me wrong - you would notice right away something is "off" if you met her.  But take it from me - she is much less autistic than a year ago.  She has come so much out of her shell.  In particular (from the CARS) we see she:
  • Is better at relating to people.
  • Has become much better at imitating.
  • Has improved play skills - she knows how to play with some toys.
  • Can cope with changes in her environment.
  • Is much less fearful and anxious.
  • Has better non-verbal communication.
It is nice to see this laid out in an assessment - it confirms what we thought but makes us be a little more critical of our opinions.  Sometimes the parents can be too optimistic.

Sunday, November 21, 2010

One Little Word

Words can be famous.  They can build up or destroy, be memorable or forgettable. They can make or break you, heal or harm you.  They can form a basis for deception, or strung together, tell a lasting truth.

When you can't find the words to say, sometimes you borrow someone else's... a quote added to the beginning of a composition, chapter of a book, or paper in university.  People with autism can use echolalia to convey a thought when they can't come up with the words on their own.

I marvel at the power of a word.

Today Alanna looked at me and smiled, then said Daddy.  She said it clear as a bell - she was clearly engaged and she knew what it meant.  I broke down right there beside her and sobbed.  I completely lost it.  The hope I had locked deep inside came out all at once and I just couldn't handle it.  My wife came beside me and wept with me and cradled my head until I could compose myself.

Before you revoke my man card, you have to understand what this means to me. I have been waiting for this word for three years, not knowing if it would ever come.  A child with autism is lost in their own world, and getting them out is a long, tortuous process.  Today Alanna was able to do more than just interact non-verbally... she showed recognition and called me by name.  It's as close as I've ever seen to her reaching out to me and expressing her feelings - something that comes to naturally to my son and other kids not affected by autism.

If you are a parent who has been through this - or perhaps you are still hoping for this moment, you know what I mean.  Something so small, yet so significant.  A memory I can hold onto during the bad times, the long nights, or the meltdowns.  I hope it will come again many times but there are no guarantees.

To all parents - treasure your children.  If they call you by name and recognize your face... if they show you their love, consider it a blessing.  It may be second nature to them, but to some parents these are words and expressions they will never hear.  They will love their children for years and never know one way or the other whether this is reciprocated.  They may dream, or guess, or think they know.  But to hear it for themselves is something else entirely.

She said Daddy!

Saturday, November 13, 2010

Alanna Turns Three

I can't believe it - my little girl is three years old in a matter of hours.  All this time I've been holding out - saying she is two until she is three.  Well, now she is three.  To celebrate this milestone we've created a little video on her behalf.  Happy Birthday Alanna!  You are so special to us and so many other people.  Keep amazing us - we know you will!

Friday, November 5, 2010

What is Autism Recovery?

I have often wondered what the term recovery from autism really means.  Most autism treatments do not make this claim.  Some ABA providers make this claim, as do some biomedical proponents.

I am not going to comment on biomedical treatments because I have little experience with them nor much belief that they work beyond a gluten-free/casein free diet (In my personal experience only makes autism "better" by making children who have GI issues feel better.  This is not the same as "recovering" from the core deficits of autism.)

This recent article by Adrienne Perry, one of my favourite local autism researchers, finally breaks it down for me.  According to her study, she defines "best outcome" as:
  • Testing in the non-autistic range on the CARS.
  • Testing 85 or higher in IQ - that would be "low average", or in the 16th (or higher) percentile.
  • Testing 85 or higher in Adaptive Behaviour Composite on the Vineland-II Adaptive Behaviour Scales.  This would mean the child is functioning at the 16th percentile or higher overall in their age group.  Note this includes social ability.
Of course, just because a child has accomplished "best outcome" doesn't mean they do not have residual affects of autism.  By definition, autism is diagnosed based on observed behaviour since there is no known medical test.  If a child tests non-autistic on the CARS, they are by definition not autistic.  Similarly, if their IQ and adaptive skills (that is, their ability to function in every day life) is close to average then one would expect the child is, for the most part, "recovered".

I think this is something of a misnomer because any "recovered" child with autism has more or less learned how to overcome their disability.  But the disability is still there.  For example, the CARS will ask if a child is distracted by visual stimuli.  A child who has "fallen off the spectrum" may still be distracted but know how to control the distraction, or at least not do it when people are looking.  It may not mean they've lost interest altogether.

Recovery or not, I think I personally need to get my head around the fact that autism will affect Alanna her entire life, and accepting that fact is not the same as giving up on her.  It's a hard pill to swallow.  I haven't taken it yet... but I'm trying.