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Autism Doesn’t End At Five: Aaron’s Story

May 26, 2016 By

Today’s “Autism Doesn’t End At Five” series features the story of Aaron, who is four years old. Even if he reaches the top of the IBI waitlist before his fifth birthday, which is unlikely, he will only receive services for a short time before his age deems him ineligible.

autism doesn't end at five - aaron

Aaron was diagnosed with autism when he was just two years old. His mother had done the research: she knew that an early diagnosis followed by early intervention would improve her son’s chances of a good outcome. She was hopeful that now that Aaron had been diagnosed, she would be able to access services for him.

Instead, she found herself and her son being placed onto one waitlist after another. While Aaron is waiting his turn for IBI services, he is missing the developmental window identified by the Ontario government. Now almost four, he still technically qualifies for IBI, but considering that most children spend two years or more on the waitlist, he is unlikely to get to the top of the list by the time he turns five.

Aaron has been identified as being on the severe end of the autism spectrum. He has many challenges: among other things, he is non-verbal, he has limited eye contact, and he is not able to use the toilet independently. Many children have made tremendous gains in all of these areas thanks to IBI therapy.

In spite of his challenges, Aaron has many strengths for IBI service providers to build on. His mother describes him as a “puzzle wizard and builder extraordinaire”. This indicates the presence of strong problem solving skills and solid learning capabilities. Everything points to Aaron being an ideal candidate for IBI, and that is not going to magically change on his fifth birthday.

A year from now, Aaron will still be highly likely to reap enormous benefits from IBI therapy. But a year from now, the Ontario government will cut off his access to this critical therapy simply because of his age.

Aaron’s parents, who also have five-year-old twin girls, are now talking about private therapy. They refuse to give up on their son, but helping him is going to result in upheaval for the family. They are listing their home for sale in an attempt to pay for IBI therapy themselves. No family should have to go through this kind of stress – especially in a country like Canada, which prides itself on human rights and equal opportunities for all people.

“My heart aches for my son and I need to stay strong to be his voice in any way I can.” – Kelly, Aaron’s mother

By Kirsten Doyle. Photo courtesy of Aaron’s mother, Kelly.

Filed Under: autism, Autism Services, IBI, Therapy Tagged With: , , , , , ,
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Autism Doesn’t End At Five – Xander’s Story

May 24, 2016 By

Today we continue our series of stories about children with autism in Ontario. The Ontario government’s recent announcement that IBI services are no longer available to children aged five and older has had devastating consequences for many families, including the family of six-year-old Xander. If you have a story to tell, send an email to kirsten(at)runningforautism(dot)com.

autism doesn't end at five - xander

When Xander started provincially funded IBI services in December 2015, his family breathed a sigh of relief. He was two months shy of his sixth birthday, and he had been on the waitlist for three years. His initial baseline assessment showed delays in several areas: he was not consistently responding to his name, his vocabulary was extremely limited, and he struggled with tasks like tracing letters and using scissors. Back then, he could not even tolerate sitting at a desk for any length of time.

Xander’s IBI team identified fourteen therapy goals for him to work towards. That is a lot for any child to accomplish. But Xander quickly became a poster child for the effectiveness of IBI therapy.

Within three months, he had accomplished – and in some cases surpassed – every one of those fourteen therapy goals. He was responding to his name and he could recite his home phone number. His vocabulary was growing steadily and he was learning to make requests verbally. He developed the ability to follow simple instructions, and he could now sit at a desk working for up to ten minutes.

In other words, IBI had given Xander the building blocks, a solid foundation upon which to build. In the next phase of IBI, he was going to build on that foundation and learn how to use his newfound skills in a functional, meaningful way.

That, at least, was the plan. Then the Ontario government came along with its announcement that IBI will no longer be provided to children aged five and older. Children of that age who are already receiving IBI services are going to be phased out of the program.

This news has been a devastating blow to Xander’s parents. In just a few short months, they saw their son start to blossom. Now they are faced with the prospect of him losing access to a method of intervention that has unlocked all kinds of potential in him. The future, that was looking so full of promise, is once again uncertain.

The Ontario government is trying to sugar-coat this by saying it is in the best interest of the kids. They are offering affected families one-time payments that do not come close to making a dent in the expense of IBI therapy. The alternative services they are offering to older children is not nearly as effective as IBI.

Xander’s story is one of a myriad tragedies affecting Ontario families in the wake of this announcement. He is living proof that IBI can and does work for older children, and unless some kind of miracle happens, he could become living proof of what happens when you remove such a crucial service from a child with autism.

By Kirsten Doyle. Photo courtesy of Xander’s mom, Shannon.

 

Filed Under: autism, Autism Services, IBI, Therapy Tagged With: , , , , , , ,
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Autism Doesn’t End At Five: George’s Story

May 23, 2016 By

This is the first in a series of stories in response to the Ontario government’s announcement that IBI services are no longer available to children aged five and older. This disgraceful, discriminatory policy ignores the fact that autism doesn’t end at five. If you have a story that you would like told, send an email to kirsten(at)runningforautism(dot)com.

George: autism doesn't end at five

My son George was diagnosed with autism when he was almost four, a full year later than he should have been (the doctor’s initial refusal to refer him for an assessment is another story for another day). By the time he had gone through the government assessment and been deemed eligible for services (yet another story for yet another day), and served his time on the waitlist, he was a couple of months past his fifth birthday.

You know, that magical cut-off beyond which, according to the Ontario government, kids can no longer benefit from IBI therapy.

When George entered IBI at five years and three months, he functioned at an eleven-month level on verbal abilities, and at sixteen months on non-verbal abilities. His overall level of functioning was fourteen months.

He had a follow-up assessment at the age of six years and five months, a little over a year after starting IBI. The results were staggering. On verbal abilities, he was now functioning at 35 months, and on non-verbal abilities he was functioning at 51 months. Overall, he was at a level of 39 months.

Can we do the math here? My son gained almost two years in verbal skills and almost three years in non-verbal skills. Overall, he made gains of 25 months in a fourteen-month period.

These gains translated into an explosion of progress that was visible to everyone. George started to learn simple skills like getting dressed and using the washroom without assistance. He spelled out full, grammatically correct sentences using alphabetic fridge magnets, and for the first time, he was making his requests verbally. When he was six, he made his first deliberate joke, and we started to see his funny, quirky sense of humour.

There are no words to describe how grateful I am that George was born at the time he was, that he turned five in 2008 and not 2015 or 2016. Because in the new reality created by the Ontario government, he would have missed out on that rocket-like trajectory of progress. He would not be where he is today – a happy twelve-year-old who, while still clearly autistic, shows incredible amounts of potential.

I feel a sense of survivor’s remorse. I feel devastated for all of the parents who will not get the experiences with their kids that I had with George. My heart breaks when I think of the potential that is being flushed away, the kids who are being left behind, the parents whose hopes have been shattered.

IBI can and does benefit children of all ages. Nobody should be left behind because of an arbitrary age cut-off, because autism doesn’t end at five.

By Kirsten Doyle. Photo credit to the author.

 

 

Filed Under: autism, IBI, Therapy Tagged With: , , , , , , ,
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Autism Doesn’t End At Five

May 22, 2016 By

Autism doesn't end at five

It has been a long time since I have posted here. I have been dealing with the stress and chaos of life. This is nothing unusual, and it certainly does not set me apart from other people. Lack of time is a symptom of twenty-first century life. Several weeks ago, though, something strange happened in the Ontario autism community. The provincial government announced that it was cutting off IBI services to children with autism aged five and older, and while other autism parents organized and attended protest rallies and made YouTubes, I was shocked into immobility. I decided to use my platform as a writer to send the message that autism doesn’t end at five, and I collected stories from autism parents. But then I was attacked by a massive case of writer’s block. This news is so big and so devastating, and I was struggling mightily to process it.

For those who are not familiar with IBI, it stands for Intensive Behavioural Intervention. It is one-on-one therapy that is administered for several hours a day, usually over a period of two or more years. It is based on a system of prompts and rewards, and it is tailored for each child that receives it. While there are some exceptions, IBI is highly effective for children with autism. When I say “highly effective”, what I really mean is “potentially life-changing”.

The Ontario government is telling parents that IBI is not effective for children aged five and older. There are many of us who know better. This week, I will be sharing stories of children whose experiences defy what the government is claiming. I will also share stories from parents who have suffered the devastation of having their children removed from the IBI waitlist.

The first story, featuring my son George, will be posted tomorrow. If you have already shared your story with me, it will be posted this week. If you have a story that you would like to have told, send an email to kirsten(at)runningforautism(dot)com. I promise to publish every story that I receive. No voice should be left unheard.

The Ontario government needs to get the loud and clear message that autism doesn’t end at five.

By Kirsten Doyle. Photo credit: QUOI Media Group. This picture has a creative commons attribution license.

Filed Under: autism, IBI, Therapy Tagged With: , ,