Right off the bat, I want to announce that On the Train with Sophie now has its very own Facebook page! Which might seem pretty rudimentary to most, but I won't even bore anyone how long it took me to set it up and the headache I had when I was done... So just for that effort, maybe you can go and "like it" right now? That would be so nice :) I feel almost in the 21st century now.
One of the first things I posted on that crisp, new page was this article from our city paper. It announced that Ontario's auditor general is making a formal inquiry into the province's autism services. This might be a direct response to a big exposé that the same paper did about the sadly lacking services in our province, entitled The Autism Project. The multi-part investigative series exposed deficits all across the board, from early intervention to school to adults living with autism.
Of course I was very interested to read both the series and this new announcement. Ontario is viewed by most as Canada's wealthiest province, yet when it comes to autism services it is lagging behind other provinces.
I thought I'd take this opportunity to make our readers aware of what exactly a newly diagnosed autistic child in Ontario receives as funded services. I won't list private services because I'm sure they're similar everywhere- if you can pay $60 000 and up a year, I'm sure you can access any therapy you want.
When Sophie received her diagnosis in August, we had to complete stacks of forms and have various intake interviews done. When that was completed Sophie ended up on a wait list for ABA (at an autism centre), IBI (if proven eligible), one hour of occupational therapy every two weeks (started in November) and speech therapy (starting tomorrow, yay). The ABA wait list is at the very least a year, most likely more. For the IBI ( individual behaviour intervention, a one-on-one ABA program) she was seen by an assessment team and found to be "young" (early intervention??) and her application was placed on hold. Perhaps they are hoping she will outgrow her autism, excuse my sarcasm. We have personally put her on the wait list for an integrated preschool with all kinds of therapists on staff. Also a year, at least. We have also filled out forms for disability assistance and other funding and so far haven't heard back regarding our eligibility.
|Sophie at play group|
And that is that. So in summary, since Sophie received her diagnosis (six months ago) the only consistent therapy she receives is occupational therapy for an hour, every two weeks. And the rest of the time? I take her to free community drop in program every morning. We are teaching her PECS. Her daddy takes her to a city-run toddler gym on Saturday mornings. We take her everywhere we can with us to get her away from the tv and to provide a rich learning environment. We do the best we can.
So what would I like to see addressed if I knew somebody that had the power to make some changes was listening? First of all, find a way to streamline all the paperwork! Parents who are just coming to terms with the fact that their child has a lifelong disability should not have to spend hours filling out forms to access funding and services. At the very least there should be an online form that you need to fill out once and that gets distributed to all agencies.
Second of all, treat each child as an individual case. Don't use a one-size-fits-most approach. What does the child need most? Speech? Occupational therapy? Behavioural therapy? We know that autism is a spectrum disorder. Shouldn't the interventions used fall on a spectrum as well?
Third of all, give the parents a choice! Yes, ABA is a tried and true approach that works well for some kids. But it is not the only one. Why not offer trained providers in several of the leading forms of therapy, such as DIR Floortime, Son Rise or Pivotal Response, to name the main ones. And then don't make the parents lock in to an approach either. If after several months of effort it doesn't seem to be working, let them try something else.
And finally, autism is a whole body disorder. Studies are finally coming out to prove that point. Offer the help of nutritionists, genetics, or allergists without being begged to. Be willing to listen to parents who have questions about dietery changes or supplements. Don't force us to have to stay up all night poring over biology texts and fumble around researching our own treatment plan. Don't make us pay out of pocket for doctors who are willing to listen- at a high price.
And now, I pose this question to you, my readers. I know the majority of our readers are from the States and Canada, but there are a significant number from Europe (hello, Finland :) and Middle East as well. How are services where you live? What is great, what is missing? Come on you lurkers, let's get some conversation going!