- by Anne Finlay-Stewart, Editor

Elizabeth is 4 1/2. She's the youngest of four children. She is intelligent and can count to one hundred and is as cute as the proverbial button.

And she has severe autism.

Elizabeth's one of the lucky ones. Her parents began to recognize early signs. They had her hearing tested before she was two, and then had her seen by a developmental pediatrician in Oakville. Elizabeth spent another nine months on a waiting list for therapy. For the past two years, Elizabeth has been receiving one-on-one professional therapy in her home for 8 hours a day, Monday to Friday. Before therapy she did not make eye contact, had no words, and made erratic physical movements. She is gradually learning, with the constant repetitions, to cope with the overwhelming sensory input she perceives.

In those two years, Elizabeth has gone from non-verbal to speaking with a little prompting. She knows her letters and colours and is, almost, toilet-trained. “And if she were sitting here with us? She might even watch you- in a side-long way,” says her mother Claire with a small grin.

Autism treatment is considered a social service and not “medically necessary”, which is why it is not covered by OHIP.  When Minister of Children, Community and Social Services Lisa MacLeod made the PC government's announcement about autism last week, she used big numbers to get the attention of the non-autism affected taxpayers.

23,000. The number of autistic children waiting for treatment in Ontario. Does removing them from the waiting list mean these children will now have what they need? Elizabeth's parents liken it to giving everyone with pneumonia one dose of a medication meant to be taken daily for a week.  Only those who were at lowest risk to begin with will benefit.

$140,000. That is the lifetime cap on autism funding per child and it sounds like a lot. Until you put it beside a few other numbers.

$20,000.  The maximum per year from birth (remember Elizabeth was older than two when she was diagnosed) until the age of five, when the amount decreases. And that is only if your family makes less than $55,000 a year.

Over this annual household income, the government begins to claw back the funding. To put that in perspective, two parents working full-time at Ontario's minimum wage make $58,240 .

Although the scale has not been released, Elizabeth's parents are estimating they might qualify for $13,000 for another year or two – enough to pay for less than 4 hours a week of her therapy, down from the current 40. When Elizabeth turns seven, that would become less than 2 hours a week.

What will happen to Elizabeth after May 1 this year, when her current funding runs out?

She will go to a school in Owen Sound with a supportive teacher and a supportive principal in the supportive Bluewater District School Board. Her daily repetitious routine will be gone – her home therapy space with its quiet and low lights and familiar objects will be traded for the noisy, busy, constantly changing environment we all associate with a stimulating kindergarten classroom. Every special event that changes the routine, so common in the last few months of the school year and cheerfully anticipated by the neurotypical members of the school community, will present a risk for Elizabeth.  A risk of a melt-down, of escalating the behaviours that come when the stimulation is overwhelming. She may not keep the control over her toilet-training or her vocalizations or movements that she has gained.

Other students will find the teacher and other staff have to spend a lot of time and attention on their new classmate. The school may be calling to ask that her parents take her home before the end of the school day, saying that Elizabeth, or her classmates or teachers, have “had enough”.

She has made so much progress, but her parents agree – removing therapy and introducing school now will cause Elizabeth to regress before she has had the chance to solidify her skills and strategies. That money already invested in her therapy will have been wasted.

One of her parents may have to quit work to care for her. The marriages of parents of autistic children are at high risk, but Elizabeth's parents have even heard couples discuss intentionally separating just to get the family income low enough to qualify for the funding they consider essential for their child's survival.

“She will become a drain on the system,” Claire said bluntly. How painful is that for a parent to say?

“Severely autistic children won't go away. They will grow into autistic adults, and without appropriate early therapy, there is a very real possibility that these adults could end up in group homes, or psychiatric wards. Or prison”.  All of which are expensive resources that are already strained to meet demand.

Children on the autism spectrum now represent 1 in every 66 children. The funding is being offered to all families with autistic children regardless of severity for the sake of “equality”. Those with children with mild autism will be able to use the money, as Minister Lisa McLeod suggested, to buy iPads or other technologies.

But Elizabeth needs far more than a computer program.

In May of 2018, in a televised leaders' debate, Doug Ford said "We will be there to support you one thousand percent. What I can tell you ..one thing... I promise you... you won't have to be protesting on the front of Queen's Park like you did with the Premier here.”

The PCs said they could do better than their predecessors. The People's Guarantee – their election platform discarded along with former leader Patrick Brown – called arbitrary age limits for autism funding “unfair” and “callous”.

Some commentators calculate that eliminating today's waiting list but drastically reducing service per child will actually save the government as much as $100 million, but the full program has yet to be made public.

“We feel that there is no transition plan. That we are running toward a cliff....in the dark,” said Claire.

Elizabeth's parents have an appointment to see their Bruce-Grey-Owen Sound MPP Bill Walker on March 22 at 3 p.m. His staff told them that his office would not hold more than eight people, so they are looking for a public room that will hold more. They know a lot of local families want answers, and they invite those parents to contact them at [email protected] for more information on the meeting.

Non-negotiable. That was the word Bill Walker used. On May 17, 2016 in the Legislature, Walker said  "Autism spectrum disorder is a lifelong battle. Children with autism will become adults with autism—more than 100,000 Ontarians in this decade alone. What then, Mr. Speaker? Children with autism require your support today, and your responsibility to deliver the needed supports is non-negotiable."

Elizabeth's parents intend to hold him to that.