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!

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!

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.

Why a National Autism Strategy Is Not a Panacea

Autism advocates in Canada have been working to develop a so-called "National Autism Strategy".  The latest has been announced by the Autism Society of Canada as part of the Canadian Autism Spectrum Disorders Alliance.  Another pillar of this strategy lies in bill C-360, which will not pass the House of Commons.  The bill is designed to ensure ABA and IBI are considered "medically necessary" as part of medicare and thus must be funded in each province.  In 2007, the Senate of Canada produced a report on autism services in Canada, making a number of recommendations.

Notwithstanding the issue of adult supports for people with autism (post-education period), most efforts tend to go into school-age or younger children with autism.  I will not comment on adult supports since I am not well informed of the issues, beyond anecdotal evidence from parents claiming that they are terribly inadequate.

In Canada, education and medical care are constitutionally controlled by the provinces.  Some provinces welcome money from the federal government with strings attached, but some do not (notably Quebec and Alberta).  The only way for the federal government to directly help families affected by autism is through the federal spending power, which basically means giving money directly to parents, or giving money to other levels of government but only if the rules set out by the federal government are met.

Without going into all of the politics, this is very difficult given the current configuration of parliament.  There is also the issue of singling out autism spectrum disorders as deserving of money but ignoring other disabilities.  This is defensible in that the costs of IBI/ABA treatments are high, but then, not all parents with children who have autism use these methods or agree with them.

I am not going to say "no" to more support to families impacted with autism.  But attempting to force standards on treatment and detection (medical responsibility) or educational standards on the provinces will not work well.  The best we can hope for is more money in the system, hopefully more directed to parents to use as they see fit.

Assessments

The provincial IBI program in Ontario likes to use two measures of progress - Adaptive Behaviour, like the Vineland II test, and IQ tests, such as the Weschler Preschool and Primary Scale of Intelligence (WPPSI).  Some parents do not care particularly about these measures, particularly the IQ test.  IQ is notoriously difficult to measure for autistic individuals due to the nature of autism:  communication is impaired so it is difficult for the individual to explain what they truly know.


If you live in Ontario and have a child with autism, you need to care about these instruments.  In particular, the Vineland II measures "adaptive" functioning.  This is basically a test to measure how well your child functions in life as compared to children their own age.  When used in an IBI program, it can typically be used to determine a child's "trajectory".  For example, in a six month period, is a child in IBI progressing at least six months in development for each domain?  If so, they are falling no further behind but not catching up either.  Failure to show enough improvement at the right rate results in the conclusion that the child's "development trajectory" is not being changed by IBI and results in a quick discharge thereafter.


The theory of intensive ABA (or IBI in Ontario) is that your child should be showing clinically significant gains across most domains or it is not effective (read:  not worth spending $60,000 per year of taxpayer money).  However, interestingly a 2006 study based on the autism program in Ontario found that all children, even those who were still progressing slowly, doubled their rate of development while in IBI.  From the study:

Rate of Development. As noted above, children were quite variable but, on average, were substantially delayed developmentally prior to the program. In fact, they had been developing at about one-third of the rate of a typically developing child. Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

So if you are parent of child in IBI, or waiting for IBI - pay attention to this test.  It is used to make clinical decisions on your child's continued progression in IBI.

Fun with Pumpkins

This past weekend we decided to take the kids out to grab a pumpkin and carve it up.  Alanna did a great job helping us scoop out the "guts".  It reminded both of us (Becca and I) of our childhood... we both felt like little kids carving up our jack-o-lantern.  Tyler was interested in the pumpkin but once we showed him the guts he was scared of it.  Maybe next year little buddy!

Confessions

I'm starting to get better at comparing Alanna to other kids her own age.  Many times, I'm able to accept where the kids are developmentally, and accept where Alanna is developmentally and how she does many things a normal kid does, albeit sometimes in a very different way.  However, I've got to confess, I did lapse into my self-pity again this week.  A very sweet little girl I know who is a little younger than Alanna saw her Dad after about a 45 minute separation, saw him, and came running shouting "Daddy, Daddy!" only to be picked up in his arms and swung around... naturally she had a big grin on her face.  After I got over coveting that simple interaction I realized that Alanna does that with me in her own way.  She might try to climb over me, smile, or press her body against mine.  If I'm really lucky I might even get a nice hug!  It is her way of telling me she missed me.

While I'm confessing, I have another thing to share.  My wife sometimes reminds me not to try to plan too far in the future (I am very much long term, forward looking person).  With Alanna, it is so hard to tell where she is going to be.  Some days, I feel happy knowing she will be herself (and develop as far as she can) and that's good enough for everyone, including me.  Other days, I worry myself thinking if I don't keep pushing for the best interventions, she won't make all the gains she could make... and have the best life she could have.

Case in point:  transition to school.  Alanna probably has a few years before this becomes an issue since she is not yet even three.  But when the time comes, do we spend $58,000 a year (how we would even get this money is beside the point) on a designated ABA school like New Haven, where Alanna will certainly learn more skills designed to get to be as independent as possible?  Or, would I use that money to save for her future (RDSP) or another a savings vehicle to provide her with lifetime care?  Yes, she will probably make some gains in the public school system, but she would make probably greater gains in a special school.  However, spending $750,000 until she turns 18 (assuming I had this money) to fund this education vs. saving it for a lifetime care fund is going to be a tough decision.  Some argue once the critical intervention time has passed, intensive intervention is not needed.  This is the refrain of the Ontario government, which stresses constantly that IBI is "time limited."  I am not sure I agree.  However when it is your money and you are responsible for the life of a child, it's not such an easy decision.  I wrack my brain on this stuff.

So perhaps I should "cross that bridge when we get to it", as my wife likes to remind me.  I'll really try.  Let's see how long I can put it out of my mind!