autism · Technology

Don’t Let Them Fool You

I wasn’t going to write about the Liberal’s “millions invested in autism”, because I was afraid of sounding a bit like a broken record playing the sweet songs of “lifelong supports”,  but a few people have messaged me today to let me know about the “great news”, so I guess the song still needs to be played.

If you are a regular reader or an acquaintance, you know that I have two teenage sons with autism.  I am always asked the impossible question of “how autistic are they” and my soundbyte response is:

My oldest is a lot like Rain Man, in that he is savant, with a really awesome sense of humor and curiosity about everything, and my youngest is non-verbal, hyper-sensory, with a lifelong history of self-injury and externalizing behaviours… he is also what I would call savant, but he cannot demonstrate it through expressive language, so he will likely never acquire that label.

They both have extremely different, and extremely unique special needs when it comes to things like healthcare, education, and employment.  They both require supervision and assistance in daily living tasks.  My oldest is definitely more self-reliant, but still has challenges with fine motor things like hair brushing or writing.  My youngest needs 24 hour close supervision or else he will end up naked on the sidewalk in February a few houses down the street, or with a massive head injury from banging his head into a window.

My kids are just two on the seemingly infinite spectrum of autism.  In my life I have really tried to understand the multiplicity of cognitive, emotional and sensory perception and functioning that exists on the spectrum.  I have met many children and adults on the spectrum… I was married to someone on the spectrum… I am likely on the spectrum myself, and lately have been starting to identify some of my own “autistic behaviours”

All this to say… I have been around the block with autism…

EIBI is a behavioural therapy that has been proven effective in an empirical way.  It is essentially classic and operant conditioning practices and has been around for about 20 years now.  It does have a good track record of teaching children how to behave in an educational environment, be as socially normal as they can, and communicate using words and eye contact.  It has been proven most effective with children who have good IQs and can receive the treatment for over 2 years, with some studies saying that 6-7 years as optimal.

My youngest had gotten a form of EIBI in preschool for 2 years (it was called ABA back then).  He went to the MSVU daycare while I was an undergrad student there, and he was fortunate at that time to have held one of the only 4 or 5  spaces for EIBI in the HRM daycare system.  It is empirically inconclusive as to whether EIBI can address significant behavioural issues… in my anecdotal experience… it cannot.

EIBI is effective because it involves up to 40 hours a week of one on one care and training in the home.  It also comes with a team of specialists and experts (who ultimately get drawn out of the public education and healthcare system).   As you can imagine, it is very, very expensive.  So expensive that there aren’t many families in Nova Scotia who could afford to put it in place on their own, even some of the 6 figure making ones…

The number of families that will have access to this gold standard of autism care will be 180 with this latest injection of money.  This has been going on for the past 10-15 years or so.  My family missed the boat on it with the first of the investments starting in 2004, the year Izaak was transitioning into school.  There were 10 spots, and who got in was supposed to be “random”… we in the autism community called it the “lottery” because it was like winning about $50-$60K in therapy and services.

I am happy for those 180 families… but… if the Canadian autism rate of 1 in 68 is applicable to NS, it means there are about 14,000 autistic people in the province.  That means around 1% of the autistic population are benefiting from these decade old, regular”investment in autism”.  What autistic people really need is flexible funding and access to a diversity of supports and programs throughout their lives, in the home, in school/the workplace and in the community.  They need safe places to live, and they need emergency services when they are in crisis.  Some of them just need a little support… some need a lot… some will be able to live independently, some will not… and by then, the fact that they got EIBI for a few of their preschool years likely won’t matter at all.

It is not a sustainable or sound investment.

So when I hear the Government of the Day pat themselves on the back for their compassionate investment I get kind of sick to my stomach, because it is really the only investment they have made to deal with an issue that affects more and more families every year… and so many families are struggling to keep it all together, as they face off with their kids schools and healthcare providers, and have to fight tooth and nail for the fair and meaningful education, treatment and care of their children.  And eventually, even the families who won the EIBI lottery, will find themselves in this position.  When their little ones grow into big ones, and the government can no longer use them in a photo op.