The Great Autism Divide

I am not autistic, but I parent a child on the spectrum.

I also have other family members who have autism. When I found out about my family members about 13–14 years ago, I did some research. It gave me a superficial awareness of autism. For years, I could give you a stereotypical run-down of what autism looks like, but it wasn’t until 2011, when we started the process to have my son assessed, that I could see how much I didn’t know.

In the years since our son diagnosed, I’ve connected with an amazing group of friends who are all raising children or supporting grandchildren with autism. I’ve joined online groups to connect with other parents in the autism community. I’ve followed adults who are autistic to learn their perspective in an effort to help my son as he lives life with autism.

But we have a major problem in the autism community — we are divided far too many times when a united front would serve us better.

I suppose that it’s understandable given that “once you’ve met one person with autism, you’ve met one person with autism.” The spectrum is not linear. It’s not predictable. Interventions that work for one child can fail miserably with another or present mediocre results for yet another. There’s no magic pill that works for every child. There’s no magic therapy that works for every child. And every family situation is different.

All of this means that the perspectives on issues in the autism community vary drastically because the needs (and sometimes preferences) are so diverse.

Person with autism vs autistic.

Research cause vs. fund therapy.

Awareness vs. acceptance.

Light it up blue or boycott blue.

Puzzle piece or not.

The list of debates that happen within the autism community is lengthy. Personally, I choose not to get involved most of the time.

Last month, the Ontario government announced $333 million in funding to improve and enhance autism therapies, with the intention of reducing wait times. That’s one-third of a billion dollars — incredible, right? It’s highly unusual for such a huge announcement of funding to be called bad news, but there hasn’t been a positive story about it that I’ve seen.

Many parents are upset because the announcement came with news that children 5 and up on the waitlist for IBI (Intensive Behavioural Intervention) would be removed from the waitlist and put into enhanced ABA (Applied Behaviour Analysis).

I’m not one of the parents who are upset. My son never qualified for IBI and this additional funding and the structural changes it will bring means that my son may actually benefit from publicly funded therapies for the first time ever.

I get the fear that’s driving the current protests. IBI has been held up as the gold standard of hope for parents of children on the spectrum who are seeking early intervention. My friends have waited 1.5 to 2 years to get their children into the program. Some have brought in private therapists to fill the gap while they wait, because we all know early intervention is critical to maximize progress in that developmental window.

It’s not about a cure. It’s about giving your child the best possible quality of life.

Not getting IBI at all is the realization of many parents’ worst fears for their child(ren) with autism. For years, it’s been touted as the best possible hope for severely autistic children in Ontario. Children like my son were never going to get IBI, but he needs therapy too.

These are the reasons I have paid out of pocket for private therapists from day one. I was lucky enough to have benefits that covered large chunks of what we needed. (Except for Occupational Therapy, which really should be next on the to do list, Ontario. OT needs to be on group benefit plans.)

The thing is every family situation is just about as drastically different as the needs of one autistic child are from another. Many families rely on publicly funded therapies to help their children and the wait times are devastating. Early intervention is critical, and every day of waiting feels like a lost opportunity.

I am in awe of the bravery of families that mortgage or sell their homes and drastically reduce their expenses to pay for private therapy during the wait times.

The volume of these stories say so much about the level of need that exists.

Parents of young children with autism are stressed out dealing with their ever-evolving day-to-day needs, worried about money or waiting on therapy, and fearful of what the future holds in store.

Knowing that an announcement of a huge influx of funding was coming, parents were excited to think that the public system would finally work for their children instead of against them.

Then the details of changes were announced and many were devastated.

They are absolutely right — autism doesn’t end at 5.

I’ve stayed silent until now about these changes. My situation isn’t theirs. My family may finally benefit from these changes. And if I’m to benefit, what point is there in saying anything? If I speak in favour, I may be criticized by those who are protesting. And I’m not likely to speak out against the changes given that they may be good for my son.

The reality is that we don’t know yet how any of these changes will look or who will benefit and how. I’ve been adopting a wait and see perspective until the Province fully implements the new structure they’re saying will be more inclusive. In theory, my family will benefit, but I don’t know that for sure.

The core of these protests is the unwavering belief that the Ontario government’s IBI program is the only answer.

Unfortunately, that is not a universal truth. I know of children who went through Ontario’s IBI but didn’t really benefit from it. I know of children who had moderate benefit. I know of children who thrived. As with any therapy, results are not guaranteed and other therapy options may work better for some children.

The announcement included news that children 5 and up will be eligible for enhanced, individualized ABA.

We don’t know what that looks like yet. It could be really valuable for many children. And if they can receive enhanced ABA sooner than IBI, the possibility exists that this new ABA now is better than continued waiting for IBI.

The problem is that there’s too much we don’t know about the new autism program.

I’m not defending the announcement and saying the changes are all good. I don’t know enough to say they’re good, bad, or otherwise. No one does.

The way the announcement was made, telling parents that they would be removed from the waitlist for IBI was insensitive and lacks enough context for parents to fully understand the changes. The explanations that have followed aren’t providing any reassurances either.

The result is that parents are scared and ready to fight for their children.

What does all of this this say about the autism community?

It is yet another way that we’re divided, even though we have a common goal: for children with autism to get the services they need when they need them, no waiting.

The fear of what will happen in the future to a child with autism who doesn’t receive the right interventions at the right time is real and valid. As parents, we know that it’s likely our children will outlive us. It is our instinct and job to help them learn to navigate life without us.

Autism creates challenges to achieving the most fundamental goal of parenting — to move your child from dependence to independence.

Is it any wonder that parents who’ve been taught that Ontario’s IBI is their child’s best hope for the future are angry and lashing out?

However, as a community, we will achieve far better for our children and our families if we present a united front. That doesn’t mean not speaking up for your own child. It means recognizing that other children will require something different from your child and allowing that parent to speak up too. Turning on each other, making personal attacks, bullying, throwing out false and unsubstantiated accusations against anyone who is trying to help will just hurt our cause and, in turn, the children we’re trying to help.

I feel great compassion for families that have been removed from the IBI waitlist. I know the news has been devastating for so many. I want every child to have the best possible therapies and I will join in protest of anything the government does that prevents us getting what we need — for your family, and for mine.