Monday, January 18, 2016

The chicken or the egg

Happy New Year!

When looking at my previous post, I realised I skipped a whole trimester.
So here's a short recap of the last trimester of 2015:
- transition from IBI to school, which went well thanks to an amazing team (at IBI as well as school),

- quiet Thanksgiving and fun Halloween, dressed as ninjas,
- relaxing vacation in the sun for the parents,
- fall in the stairs for me, the day we got Mani, our new service dog,
- and vacation in Florida for Christmas, with a lot of sun, days at the parks, and our first Disney Cruise.

But let's move on to 2016!
Our year, as far as Cédric's journey goes, started with the results of a consultation with a team of experts. They observed Cédric in October to advise us concerning some of his more extreme and hard to understand behaviours.
They offered a variety of advice but most importantly one core conclusion which gives us a better idea of who Cédric is and how to approach his development, but which also brings me to the following question: the chicken or the egg?

Let me explain. Cédric has had an autism diagnosis since the age of 4, and a diagnosis of intellectual disability for about a year. As my previous post mentions, he has a chronological age of 8, but a developmental age between 1 and 2.
The psychologist of the team concluded that the approach we take regarding Cédric's development, abilities, and learning should take this disability into account, even more so than the autism. Establishing for Cédric goals and expectations typical for children on the spectrum wouldn't be realistic, unfair towards him, and would only lead to disappointment and failure. We must first consider his developmental age and abilities.

But the system of services in place in Ontario consider autism his primary diagnosis. He therefore accesses autism services with autism specialists. And as he already gets services for that diagnosis, he can't access the corresponding services with the agency specialized in intellectual disabilities. This system is in place to avoid service duplication, partly to lower costs and to insure that all children access services within reasonable timeframes.

And it's true that according to the most recent studies and theories that Dave has read, it seems autism is genetic, and it is autism which causes the brain to function differently during its development, preventing the typical connections to happen and in some severe cases, causing an intellectual delay or disability.
We often ask the question of the chicken or the egg, and the theory of evolution answers rather clearly that the egg came first. In our case, the diagnosis of autism is in fact primary.
But when we ask the question philosophically, things are more complex. For the chicken or the egg, we are usually trying to raise a question with no answer, an endless circle, and everyone can argue their view of the topic.
In our case, if we stay with the egg, we limit Cédric's access to specialists who might be better able to understand his functioning. The chicken, Cédric the way really is in the end, matter more than the egg. Cédric is more affected and limited by his intellectual disability than by his autism.
And in fact, as there is comorbidity of the two diagnoses, regardless of whether they are two separate things or whether one causes the other, he should have access to specialists of both.

If the question was purely philosophical, or purely scientific, it wouldn't matter much. But because of the issue of access to services, it is crucial. It even affects his schooling. First, just as for us at home, the team who works with Cédric (teachers, teacher aids and consultants) must change their perspectives and expectations. Moreover, and most importantly, the school has an autism classroom, brand new this year, just in time to welcome Cédric. But it also has a development classroom, more adapted to children with various diagnoses, and often, a intellectual delay or disability. And the question therefore is whether Cédric should be in the autism classroom, or in the development classroom.

The question is recent and hasn't yet done or changed anything.
Personally, the psychologist's conclusion doesn't surprise me and confirms what we felt ourselves. It's a new step in the grief that is having a child with special needs. We always hang on to the idea of a remission, sudden progress, a magical medication or procedure. But it's also a step towards a better understanding and acceptance of our son as he is and it likely that more realistic approaches and expectations would help us eliminate frustrations for him as well as for us.
But I mostly feel a lot of questions, phone calls, decisions to make, and changes coming. I can only hope that they are for the best and help us better understand and support our little dude!