Cynthia Miller-Lautman

Waachiyaa, I’m Cynthia Miller-Lautman, an Occupational Therapist I have with me today. Bethany Hartropp, who is an Occupational Therapist on our team at Disability Programs Specialized Services. Bethany, thanks so much for being here today.

Bethany Hartopp

Waachiyaa, I’m happy to be here today and to discuss a topic that is very close to my heart, Meegwetch.

Cynthia Miller-Lautman

Autism or autism spectrum disorder. ASD refers to a broad range of conditions, often characterized by difficulty with social skills, repetitive behaviors, speech and non-verbal communication. We will explain all of this in this podcast, but we wanted you to know these difficulties can make it difficult for a person with autism to participate in family and community life. We are hoping this podcast will help get people with autism. The support and targeted help earlier on in their journey.

Bethany Hartopp

So, Cynthia, could we talk about what autism actually is?

Cynthia Miller-Lautman

Yeah, that’s a good one, Bethany. Autism is actually a brain condition. The person is born with it and there’s often no physical signs. Someone with a physical disability who might be missing a leg. You can see that they have a disability, but with autism you cannot easily see it. People with autism look the same as people without autism. This is what we refer to as invisible. There are some criteria that a person must have to be diagnosed with autism. They would be diagnosed by a doctor. So some of these criteria which we’re going to talk about today, there’s more than what we’re going to list here. But these are the really important ones we wanted you to be aware of today. And you must have some or all of these to be diagnosed with autism. There is sensory processing difficulties and we’ll explain this later. Social communication difficulties, fixated interests and rigidity. So Bethany, let’s start with a story about autism. Can you share your story of Kari?

Bethany Hartopp

Yes. So Kari was a young boy. He was about ten years old. And he had friends at school and he loved to play video games. And Kari went to school and he went to all of his classes and he did gym class and he liked to play with his friends outside of school as well. And Kari had autism. And what Kari needed was a routine. And he needed a 5 to 10 minute countdown before a change in activity to help him. He needed a lot of repeating. Once the routine was going, he was fine. But if something changed in the routine, he would have a lot of difficulty with that. So, for example, there was one time when he would normally take the bus and one day his bus seat was moved in the bus without getting any advance warning.

And he really got very agitated and he had to leave the bus and he had to walk around for 10, 15 minutes. And everybody else, all the kids on the bus were waiting and they didn’t understand why he was upset. And he had to really take some time to calm down. So that would be an example of somebody who where his autism, his type of autism really affected him with his ability to change between activities. And it affected him in the classroom with changing activities and in his social relationships as well.

Cynthia Miller-Lautman

And it really does sound like this young man with autism really did well with routine and schedule and couldn’t deal well with changes which many family members that have someone with autism living with them can speak to that. I have a little story of of someone that I knew, his name was Kevin that also was diagnosed with autism when he was younger. Kevin really wanted to be involved in activities. He loved being part of things at school, but he often would feel overwhelmed by new situations. He had a lot of trouble making friends and keeping friends, mostly because he would often say something very awkward or forget to say hi and he would dig right into his discussion and his monologue almost where he would just talk about Minecraft video games. So people around him felt this was strange and had trouble connecting with him because he was often so focused on his Minecraft video game and telling people all about it. But like I mentioned, he really wanted to have friends and he started to feel really bad about himself when he couldn’t keep those friends, he had so much trouble recognizing facial expressions from other people around him.

So his friends, for example, he would tell them something and they would be making a face to say, I’m really this, I’m not interested. And he couldn’t read that off their face. Not at all. So he would just keep going about Minecraft and not pay attention to what their face and their nonverbal body messages were saying. And so, again, it would make his friends not want to hang out with him because he didn’t seem to pay attention to what they needed. He also had a lot of rigidity in the classroom. And what I mean by rigidity is he had to do things a certain way or he wouldn’t function, he would have trouble paying attention. So, for example, when he got into class, he had to put his water bottle on his desk, line up all his pencils a certain way. If it wasn’t lined up perfectly, he would stay there until it was perfectly lined up, the same thing every day. He would eat the same thing for lunch in the same order. Exactly. And his classmates would start to laugh at him because as he got older, this looked strange to his friends and they didn’t understand him. And this made it really hard for him. And he had a lot of trouble fitting in.

Bethany Hartopp

So that’s a very different type of autism, it looks like, Cynthia, from what you’re saying, from the person that I was talking about. But both of these people have autism and the things that you’re talking about, a difficulty with communication but not verbal communication and talking about social communication and being able to understand cues that people are expressing and giving that are not just verbal.

Cynthia Miller-Lautman

You got it.

Bethany Hartopp

Facial cues and tones of voice.

Cynthia Miller-Lautman

Sorry. Yeah, you said facial cues. Yeah, yeah. You’re so right, Bethany. This boy might slip through the cracks. He might suffer greatly with his self-esteem in his life, all because he could talk. So no one would think he had autism, but he was missing all those social communication skills that we take for granted. If you are developing neuro typically and what I mean by neuro typically without an impairment like autism or another invisible disability, which we’ll talk about a little more. So those were two very different stories. But Bethany, can you tell me a little bit what’s going on there?

Bethany Hartopp

Mm hmm. Yes. So these two people have life experiences that are very different, but they both have autism, because with autism, it is Autism Spectrum Disorder, and the word spectrum means that it is a range. So that means that every single person who has that diagnosis has a different experience of the condition. And that’s something that we’re going to talk a lot about today, is that every person has a different experience of autism, which means that their families have different experiences of autism as well. But there are certain things that are needed for a diagnosis of autism as well.

Cynthia Miller-Lautman

Bethany, I wanted you to tell us a story. I know you have a little girl with sensory processing troubles. Can you share that story with us?

Bethany Hartopp

Mm hmm. I would definitely share that story with you. So this is a story about Hayley. And Hayley is a young lady who will get up in the morning but will need help getting up in the morning, because when she’s lying in bed, she looks at the fan above her bed, going round and round, and she likes watching the fan just going round and round above her bed. So she needs some assistance to be distracted from the fan going round. And then once she’s out of bed, she likes doing the same things over and over again with her body. So for example, she’ll often flap her hands and that seems to make her feel good. She’ll sit in the rocking chair at home and she can rock for hours all day and she’ll get really upset if you try to get her out of the rocking chair. She can get very upset by loud noises or crowded situations as well and things that are unpredictable. So at home she’s okay with the noises that are at home. So that’s fine. So she can sit in the rocking chair and have the family around her at home, and so she’ll go through her day with her people at home.

But then if there’s a big family gathering, she’ll go to the family gathering and she can walk in and then she’ll stay a couple of minutes. But then because she gets so stressed by the noise and the number of people who are there, that she’ll she will try to leave not because she wants to leave. Because she does want to go. She wants to be there, but she can’t. She gets so stressed by the people who by the number of people, not by the people, but by the number of people who were there and by the noise. And so she finds a way so that and then her family has to run after her and try to calm her down. And she’s upset because she wants to go back, but she doesn’t know how because she’s stressed by the noise. So she’s upset and then her family is upset as well. And yeah, so that’s Hayley. It’s very difficult for her because she doesn’t know how to manage it and her family wants her to be in the family gatherings too. And it’s difficult because she’s not able to be part of those big family gatherings or the community celebrations either.

Cynthia Miller-Lautman

Thanks. So, yes, Bethany, like Hayley, many people with autism have what’s called sensory processing problems. It’s one of the criteria that often people with autism are diagnosed with. And what that means is people with autism have trouble regulating the sensations around them or inside of their bodies, just like Hayley, who was so overwhelmed by too many people and noises and the movements around her at her gathering. But some people with autism might also be overwhelmed by such movements as riding in the car or people touching them, even their friends or family. They might feel too much from their clothes and they might even refuse to wear some of their clothes, all because a tag or the sock seam is too scratchy. Mostly all people with autism are diagnosed with some form of sensory processing difficulties.

There is another criteria of autism that is really important, and we talked about it a little bit in the story of Kevin, and that is social communication difficulties. People with autism can have a lot of trouble making and keeping friends. Not that they don’t want to develop and make friendships. They have trouble keeping them. Often that is because they have trouble having back and forth conversations. It can be very hard for them once they get fixated on some topic, like Minecraft, in the case of Kevin, they talk about that a lot and that’s what they want to focus on. So they have trouble holding on to those friendships. They also sometimes have a hard time sharing interests with their age group. So they, like Kevin, he fixated on Minecraft even though he was maybe a teenager now and.

His friend group was more interested in girls and those relationships but he was always wanting to talk about Minecraft at 14 or 15 years old. So this also made it hard for him and it made his social communication difficulties evident and observable to his friends and teachers. And there’s also another social communication difficulty that many people with autism have, and that’s trouble with eye contact. And what I mean by eye contact is looking at people in the eyes, not all the time, but using eye contact appropriately. And what I mean is when someone tells you something, you might look at their eyes and nod, and then look down and look up. Oh! They told you something interesting again. You might look up at their eyes. People with autism have a lot of trouble with eye contact and using it appropriately, which also then can make it hard and makes them look awkward and have trouble with social communication with their friends

.

Bethany Hartopp

That sounds quite difficult for the person who has autism because people with autism, we talked about this before, they do want to have relationships with people, like you were saying and they do feel emotions and they do love people. They just have that difficulty expressing it and picking up on cues as well. So another criteria for autism is insisting that things be the same also sometimes called rigidity. So this would be like the story that I told of the boy on the bus who always needed to have the same seat and who got really upset when the seat was changed. This also sometimes looks like somebody who has interests that stay the same all the time and will talk about a topic and not change topics. And with younger children, sometimes it will be that they play with one toy and have difficulty changing toys. So sometimes in daycare, for example, children will play with one toy for a few minutes and then will try a new toy and then we’ll move on to another toy. A child with autism will often choose one toy and then will stick with that toy and that one toy. And they’ll play with that one toy over and over and over again.

Cynthia Miller-Lautman

So as you mentioned, that this criteria is called difficulty and very rigid. And also having fixated interests, like you said, like on the same toy, like their Lightning McQueen toy car, that kind of thing. Okay. Right. So this criteria is like a lot of rigidity. I get it.

Bethany Hartopp

Yes. That’s right.

Cynthia Miller-Lautman

So we did just talk about three big criteria that many people with autism are diagnosed with. And just to summarize, that was sensory processing difficulties, social communication difficulties, rigidity and fixated interests. But Bethany, people often ask what caused autism? What causes it?

Bethany Hartopp

Yeah, a lot of people have this question and the answer is no one knows what causes autism. The most recent research shows that there is no link between childhood vaccinations and autism, which was a question a few years ago. Research shows that there is no link. That’s the most recent research. If people have questions about this, then please talk to your doctor. What we do know is that people are born with autism. That is something that we do know, that it’s caused by changes to the brain while the baby is growing, people usually notice changes in the child or signs of autism when the child begins to talk or doesn’t talk and the signs I usually noticed around the ages of 18 months to two years. Those are the things that we know the most about autism and the onset of symptoms.

Cynthia Miller-Lautman

Bethany, how many people have autism?

Bethany Hartopp

So in Canada, it is estimated that one in 66 children and youth have autism spectrum disorder. This is similar to other nations around the world and this is not necessarily people who have been diagnosed. This means that in a community of a thousand people, there would be about 15 children or youth with autism.

Cynthia Miller-Lautman

Wow. Okay. That’s quite a high number. So another big question that families have about autism is, will it disappear.

Bethany Hartopp

No, autism does not disappear. It is a lifelong condition. But the ability to live in community, to have relationships, to live in family, there are things that we can do and that the person can learn that makes it easier. And some of those things we’re going to talk about in part two and some of those things are having a routine and having a role in the community, having people say hello, being included in everything that goes on in the community, learning how to communicate with people with autism and creating a chance for the person to really learn skills that mean that they have a role in the community, that they are included in all aspects of the community and in family life as well. Yeah, and all of these things means that the person becomes more confident. They become more comfortable. Yeah. So they can live life as part of a community member.

Cynthia Miller-Lautman

Thanks, Bethany. So let’s do maybe a recap and could you maybe give us a list of some of the things that parents or loved ones might see in their children if they suspect autism?

Bethany Hartopp

Sure. So how about if I give the list and then, Cynthia, if you explained some of them after, because some of them are medical terms. So if you explain them after. Yeah.

Cynthia Miller-Lautman

Right.

Bethany Hartopp

So if the child often does not respond when you call their name, if they have repeated physical movements, if they speak on a subject and have difficulty changing topics, if they repeat words after you, it’s called echolalia. If they do not have any pretend play, if they have difficulty with eye contact, trouble changing from one activity to the next and very over sensitive to sensory experiences. Okay. Some things to look out for.

Cynthia Miller-Lautman

Thanks, Bethany. Yeah, I think I will dig in a little deeper because I want to explain, you mentioned repeated physical movements. And what I want to kind of bring to light is what that looks like. So someone with autism who has repeated physical movements might do something called like hand flapping. That’s very common where they flap their hands on the side of them.

They do that as a technique to calm themselves down. They might repeatedly bang their head or spin more than other kids. They might spin around in a circle. They might rock themselves back and forth a lot to calm themselves down and try to get themselves calmer. So that would be what the physical, repeated physical movement is. But they also you mentioned the word echolalia, so repeating words. So someone with autism who has echolalia, would kind of do this, you might say, “Kevin, can you give me the iPad?” And instead of Kevin saying, “sure”, he might say, “Give me the iPad, Kevin, give me the iPad, Kevin, give me the iPad.” So that is echolalia. That is repeating back what you said. Instead of answering you, he would repeat back. There’s also something known as delayed echolalia and that means repeating back something they heard or saw on TV hours later. So for example, they might see something about Dora the Explorer. And then 3 hours later, they’re repeating a line that Dora said on her TV show and it might come out of the blue while they’re at school.

That is called delayed echolalia. So that is a common sign in autism. So Bethany also mentioned little interest in pretend play. So, for example, if I give a two year old a cup and a spoon, they would probably begin to start trying to feed their mom or their dad or their stuffed animal or their doll, if they were developing normally, a child with autism would take that cup and spoon it around two And instead of feeding or practicing, pretend play with it, they would roll the cup back and forth. They might drop it on the floor and watch that cup drop on the floor. So that is showing an ability not to pretend play. And it gets more noticeable as the child goes through daycare and isn’t able to pretend play with the other kids their age at three and four years old. So that’s little interest in pretend play and that is another sign of autism. So you also mentioned difficulty with eye contact, which I explain before I have trouble looking at someone in the eye. And the one I really wanted to explain was overly sensitive to sensory experiences. So a child with autism might be refusing to get their teeth brushed, might be a really, really picky eater. They might refuse to wear certain kinds of clothing and never anything with elastics around their waists and their socks have to be just a certain way pulled up just right. They might be overly sensitive to noises, they might make noises little like “mmmmmmmms” on the side to actually blank out other noises that are bothering them around them.

Bethany Hartopp

And so Cynthia, I know there’s a lot of new information about people with autism and their senses. Could you please explain this?

Cynthia Miller-Lautman

Sure. I think what I need to tell everyone about is what’s called the just rate theory. Many of us go through our day and when we wake up, we feel tired. We’re on low. We have trouble getting out of bed. So we have an alarm clock that makes a loud beeping noise so that it gets us up. We might then go down and make a coffee or a tea so that we can get to just right. So that we can get to work on time. Same thing if our child has a tantrum over the lunch hour while they’re home for lunch, our heart is beating fast. We’re feeling stressed out. We are on high, but we can hopefully take a few short breaths, maybe have a chocolate bar or another tea and start calming ourselves down so we can get to just right so that we can make it on time for our afternoon work. Meeting. People with autism have a lot of trouble going from low in the morning, for example, to just right or they have trouble once they feel too much and on high to get themselves back to just right. That’s the sensory processing problems that’s the sensory sensory regulation problems that people with autism have. In fact, many, many people with autism will talk really about getting stuck in the extremes of on low or on high and not knowing how to get back to just right without doing some behaviors that look strange or different to the rest of us.

So, for example, Hailey, who ran away from the gathering because she was actually trying to get herself to just right by leaving the noisy environment she was in and going outside where it was calmer for her. But that always isn’t an acceptable behavior, especially if you’re in school. Running out of a classroom is not an acceptable behavior, but it doesn’t mean they’re not trying to get themselves to just right. They’re having a trouble doing it easily and in a way that is acceptable. So people with autism really can get stressed out about what is going on around them more easily than people without autism. So they are affected by classroom noises often or classroom situations more than the other kids. They might not see problems or difficulties at home because maybe the home is a quieter place with less noises compared to the classroom who has other children making noises and their chairs, scratching when they move them. So I have a story of a young man who I worked with early on when I was in my journey in being an occupational therapist. And I used to see him once a week and I would work with him in therapy and he had autism. He was a big guy and one day things would always go really well when I was working with him. But one day the teacher came to me and said, “he’s been off all morning. He is making noises, he is yelling.” He is obviously really upset and she didn’t know what was wrong. He kept tapping the back of his neck and so I didn’t know what was wrong.

It sounded like he was in pain. So we took a walk to the nurse’s office and we decided to look under his shirt to see what was going on, if he had a sore or something. And all we found was that he had a new shirt on that day and he had the tag in the back of his shirt that was scratching him. So he was so bothered by that tag that many of us could have just ignored and gone on with our day or, you know, said some words to say, “Hey, this is bothering me. I’m gonna go get some scissors and cut it out.” He could not, he could not get himself to just ignore that tag. It felt like it was pins and needles on head the back of his neck, and it ruined his whole day and it disrupted his whole class and his teacher, who was really stressed out by the end of this. So funny enough, the nurse just took a pair of scissors, cut off that tag, and he was good to go. He walked right back to class.

Bethany Hartopp

Wow. So one tag had a big effect on him, which then because he couldn’t figure it out. Like you said, had an impact on the class and the teacher. Until it was remedied. Right. So the just right theory, Cynthia, that is having high energy when I need to have high energy like for if I am in gym class or school or if I’m at work, it’s having low energy when I need to be at low energy level, like for when I’m going to sleep and most people can figure out how to get to those two levels on their own. People with autism may have difficulty getting to those levels on their own and might need help.

Cynthia Miller-Lautman

Yeah, and I would even clarify even more. They sometimes have trouble to get to just right. Sometimes we don’t even need to be on high or low. We just we need to be a little bit on high. A little bit on low. We need to be at just right. And they have a lot of trouble getting to just right and just right for writing an exam means you need to be able to sit and write your exam for 2 hours. Just right for snowshoeing. You might need some high energy, as you said. So you have the energy to go out snowshoeing. You wouldn’t do you any good if you were on low and you wouldn’t have the energy to go snowshoeing. So you’re right, it really is trouble getting to the just right energy to do the tasks or the jobs or the schoolwork or the socializing with friends that they need to do.

Bethany Hartopp

Okay. So, Cynthia, if I am a parent or a caregiver in Eeyou Istchee and I’m looking after a child and I see one or more of these signs in the child that I’m looking after, what do I do?

Cynthia Miller-Lautman

Mm. I like that you said one or more of the signs. I want to be very clear that just because you have one of these things that your child is showing, one of the things we’ve talked about doesn’t mean they have autism, really to be diagnosed with autism, you a few of these criteria that happen repeatedly over and over, often at home, at school, in different environments to be diagnosed with autism. That being said, if your child is showing some of these signs, I wouldn’t wait. I would go to your local clinic, talk to your doctor, tell them you’re concerned, take a video if you’re comfortable with that, show them how they’re having trouble in a social situation with friends. Take a video of them crying during teeth brushing or, you know, refusing to eat different foods.

It’s important that they see what you’re talking about. You can also talk to your daycare or school because they might have noticed some of the things you’re seeing and you might feel better knowing that, yes, they’re noticing the same things, too, or no, they don’t see that at all. So your doctor, when you do go see them, might ask you some questions and they might ask some questions of the school or daycare. Right now, very few of the communities in Eeyou Istche are doing in community diagnosis of autism. But your doctor will know more about this. To be assessed for a diagnosis of autism, your child, when they’re under six years of age, can be referred to the Montreal Children’s Hospital for a diagnosis. But if your child is over six years of age, your doctor will help direct you to where you can get an assessment and a diagnosis. After the assessment, If there is a diagnosis of autism, you will receive some recommendations on how to make life at home and school easier. This might include referrals for treatment for one of your local rehabilitation specialists, like an occupational therapist or the psycho educator or a special needs educator. We will have more on this in part two.

Bethany Hartopp

Okay. So talk to my doctor. Ask daycare, school other people if they’ve noticed similar things or anything else in my child. Do not try to handle it on my own and reach out because there are people who can help me.

Cynthia Miller-Lautman

Yes, you got it.

Bethany Hartopp

Okay.

Cynthia Miller-Lautman

So in part one, we’ve spent a lot of time talking about what autism is and how to get diagnosed. But there are a lot of things that can help people with autism. In part two, we will be discussing some of the things that you can do to start making a difference right away. Even if you don’t have a diagnosis. So please join us for part two. We do want you to know that a disability is only one part of a person and there are a lot of other gifts that the person brings to their family and their community. It will be important to look for those gifts and to encourage them.