April is autism awareness month, an appropriate time to think about the autism journey experienced by many families. Recently the Ontario government announced improvements in funding for kids with autism. The idea sounded like a good one — increase funding to support greater access to Intensive Behavioural Intervention (IBI). Certainly, the evidence supports the notion that earlier support can make a huge difference in outcomes for young kids diagnosed along the autism spectrum. We have long needed another look at funding mechanisms for autism diagnosis and treatment in Canada, so this should be a good thing, right?
The challenge with the current proposal is that the cut off age for kids to access these funds is 5 – 5!!! Our ability to diagnose autism – and particularly classical presentations of autism – has gotten better, but those involved in care of kids with differences will tell you that a confirmed diagnosis of autism before the age of 5 is a challenge. Why? Because at this age often it is a chess game of determining what is unusual and what is part of the spectrum of development for children. If, for example, Tommy is not talking in full sentences at 3, do we worry about that or do we decide that Tommy might just take a little longer?
The more glaring issue with the current funding proposal is that it completely negates the needs and experiences of every person on the autism spectrum who is soon to be 5 or over the age of 5. Those nearing the age of 5 will receive a payment of $8,000 to assist with support. But wait, doesn’t the cost of effective treatment for any child on the autism spectrum cost so much that it essentially bankrupts families — what the hell will $8,000 do? Maybe allow a family to start treatment that they will soon have to stop because they can’t afford to sustain it. Further, families are told that monies will be going to provide better support in the school system. So again, tell us a story that we haven’t heard before – those of us with kids well beyond the age of 5 have been hearing for years about all the additional supports that will be added into the school system. While there are improvements, in no way is the system prepared to take on the rigorous support needed to help those on the spectrum reach their potential — and regardless of degree of disability they do all have significant potential.
Which leads to the other group again completely shut out of any funding or supports — adolescents, teens and young adults who are on the spectrum. Yes, Virginia, kids who are on the autism spectrum grow up to be adolescents, then teens and then adults living with autism. Supports for this group are almost nonexistent. Where is the equity in that? I have a young adult on the spectrum, considered to be high functioning which is just part of the labeling that follows these kids. He was diagnosed at the age of 5 – a diagnosis I fought for. At the time, the developmental pediatrician providing the diagnosis commented that it was highly unusual to diagnosis a child with an autism spectrum disorder (in his case Asperger’s Syndrome) at the age of 5. He did not receive Applied Behaviour Analysis (ABA) or IBI, but I did spend a lot of money and time on treatments, assessments and interventions that were not covered. I spent his entire elementary school period fighting – to get him supports (which were often shared with other kids who needed more support), to have his needs acknowledged, to educate his educators that he wasn’t a “bad” kid or a “difficult” kid but that he needed a different type of support.
All of this was an effort to ensure that he grew into a valued and productive member of society – he wasn’t getting the supports elsewhere so it was up to us to provide them. The best example of lack of supports came in the shape of a phone call I received from an agency that had provided behavioural supports when my son was in public school, services we had long since outgrown. They were calling to give me the good news that he had finally reached the “top of the list” to receive Special Services at home and they wished to know how I would like to use the supports. I was dumbfounded and replied, “Well, he is now 17 and does not need them.” The person on the phone was equally stunned that I would say no to the supports – but honestly at this point my son is where he is in life because of the work I have done with him. So here is a waiting list that I have been on for so long (10 years) that I completely forgot about — 10 years????
If this was any other wait list in the healthcare system we would address it. We don’t see those waiting for joint replacements spending 10 years on a waiting list – how do we justify a young child waiting from the ages of 7 -17 to receive supports that may have helped him? Now he is in post-secondary education and has had some bumps in the road – he is preparing to launch a career and intends to be successful. Yet, aside from accessing accessibility services at his school there are no supports (except me!) to help him. Yes, we are the parents of kids who have disability and expect to be fully involved in our children’s care, but in the case of those on the autism spectrum it seems like most of this is downloaded onto us. And the evidence suggests there are a great many challenges for young adults on the spectrum, in managing post-secondary education, navigating personal relationships and finding and keeping a job. So not providing funding to create supports for this group means that there will be a need to provide them supports financially if they are not able to work.
No one will disagree that our current funding system is broken, but a response that excludes a significant portion of those affected is morally reprehensible, this decision needs to be reconsidered.
About Kim English
I am a Registered Nurse, and Nursing professor with a passion for addressing mental health issues amongst youth. My specific areas of interest are assisting those with mental illness and on the autism spectrum navigate post secondary education and career entry. I also serve as an advocate for rural and Indigenous youth mental health issues.