#Autism funding is slashed at age 5 | Kyla Matton Osborne
#AutismDoesntEndAt5 is a trending tag on Twitter today. As the parent of an autistic child, I understand why people would say that autism doesn’t end at age 5, but I wondered whether others would get the reference. Let me share a little, based on our family’s experience with autism services.
In most places in Canada, services for autistic children are provided by the health and social service network, or through the school system. Especially for children under school age, it’s common for special services like speech therapy and an integration aide for community-based activities to be provided by the local social service agency. One of the most important services that an autistic person needs is a special therapy called Applied Behaviour Analysis, or ABA.
The best way I can describe ABA is that it’s a tool that helps an autistic person learn how to learn. Autism gets in the way of a child understanding what’s going on around him, and because things are often so mixed up in his mind he isn’t able to sort out what he should pay attention to and what to filter out. He doesn’t know how to play copycat, and he doesn’t learn to speak by listening to parents or siblings speak.
An autistic person’s brain needs a sort of filing system, before he can begin to learn the things most children just pick up naturally as they grow. ABA helps the child to create that filing system. I won’t go into the details of how this works. Let me just say that the tasks are very simple ones like copying the teacher or cradling a baby in his arms. He has to keep following the teacher’s instructions and completing the task until he can get it right reliably. Then he moves on to another task.
This repetition might sound boring or even unkind to us, but for the autistic child it is so important. This is how he learns: he has to see or do something over and over, and over again. My son would even do this on his own, with nobody prompting him. He only started to speak after he had watched his favorite movies and TV shows hundreds and hundreds of times. Often he would repeat a 30-second clip over and over, dozens of times. This is what he needed to learn.
In many communities, if an autistic child isn’t receiving special services by the time he turns five, he may never have free or subsidized services at all. There are long waiting lists, both for diagnosis and for referral to services like ABA, speech therapy or occupational therapy. It’s common for autistic children to “age off the list” without ever receiving any appropriate services, and without their parents ever receiving any educational services or support.
In jurisdictions where ABA – considered the only gold standard therapy for autism – is provided to most younger children, the service is cut once the child starts school. In my home province of British Columbia, parents are given more control over what services to engage. But still, funding drops drastically from $22,000 to only $6,000 per year after the child turns six.
Autism funding is slashed at age 5 | Kyla Matton Osborne #rubywriter | Feel free to use this #autism image when you pin this post on Pinterest
So now you can see why parents want to remind their government representatives that autism doesn’t end at 5! In fact in my experience, the journey of an autistic child and his family is only just beginning around age five. I can say that my Bug only really started to show significant progress around the end of elementary school – so a good six years after the funding dropped off. Autistic children need supports in school and in the community, and if those supports aren’t there it just takes them even longer to develop. And that means a lot of autistic kids growing into adults who cannot live independently or work a regular job, or care for their own health and financial affairs.
Slashing the funding for autism services after age five may seem like an effective way to save money, but in the long run it means more adults who need more services, and at a time when their parents are growing older and less able to look after them. Society benefits greatly when we focus on intensive early intervention for autistic children, and our governments need to understand that.
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Excellent post.
@Admin Thanks so much for the compliment!
Great information in this blog! I’m going to send the link to a friend of mine, so she can read this. She has an autistic child. I'm sure she will find it helpful. @ruby3881
I hope your friend will find this useful! I'm sure that the system works somewhat differently in Europe, though. So her experience may be very different to ours. Even between Canada and the US, the system is very different. And in Canada, each province decides how it will help the families of autistic children. Our experiences as parents of autistic kids are often very similar, but the ways we cope for the purpose of getting funding and services can be quite different.
You've explained this issue succinctly, especially for people such as myself who don't have experience with autistic children and adults. It makes the most sense to provide services during the child's formative years, as you pointed out. The dollars saved by cutting these services to children will surely be spent -- and much more -- if they enter their adult years needing support.
It can be really tempting to assume that saving money now is a good thing, especially when it comes to a government whose principal players may not even be in power by the time the child is grown. But yes, investing in a child's development mo could very well mean he will require greatly reduced supports as an adult.
Well done Kyla, you explained this for everyone who has no clue and those who know only a little bit about dealing with a child with autism. Thank you for this post. I hope many more people see it and join in the fight to keep the funding for these children, so that they have the help they need.
It's a tough fight, that's for sure! But these kids are really smart. If only they were all getting the services they need, without all the budgetary constraints!
We're lucky that our government is providing these special children for their education needs even they are already 5 years old. We have special education for them.
@nakitakona13 We have free state-provided special education here too. In fact, my son was able to start school early and has been provided with an intervention aide all the way through school because of his special needs. His special education class is small and self-contained, with a supervision ratio of about one adult to four students.
The class goes horseback riding, grows food in the community greenhouse and helps with a salad bar program offered to the whole school, they swim weekly and receive visits from therapy dogs, and so much more. The academic and living skills programs are great, and we love the teacher and his assistants!
But it's important not to confuse special education, which happens in a group setting, with ABA. ABA is a therapy prescribed by a doctor, and not an educational service. It is very intensive, and is almost always done one-to-one. This is what makes it so expensive.
Therapies like ABA and intensive behaviour intervention (IBI) are what help autistic children get the most from their special education. It's just like getting speech therapy, taking necessary medication, wearing glasses or a hearing aid, or having corrective surgery. The autistic person needs this doctor-prescribed therapy in addition to special education services. Special ed cannot replace ABA.
Autism has been a great problem for many parents who have kids who suffer from autism. I like the information that you have shared it's very informative, and it states everything clearly on how they behave so that one is able to recognize a problem early enough and work on it. I agree that such complications need to be given the attention that it desrves to save lives. Like you have said that it's better if more funds are pumped into the treatment early enough than waiting for it to escallate to the time when one is an adult. The earlier the better it saves one a lot of time, stress and finances.