In a fascinating interview, McCleary opens a window into her experience of life with autistic kids, self-discovery and the challenges of a world fixated on easy answers.
Note: quotes have been edited for space and clarity.
Jamie McCleary’s family first encountered autism when her eldest son was three years old. “I knew something was different about him when I was pregnant. He was extremely active, beyond anything I had ever thought possible. Then, when he was born, he had a lot of sensitivity; he wanted to be held very tightly, so he was strapped to my chest 24/7. He had problems sleeping, and there was a lot of other things that just kind of added up to that,” she recalls.
Three years of nurse and community worker visits eventually led to a local non-government organization, Community Living, helping McCleary and her family access an autism assessment. McCleary’s experience is not unusual. For many parents, getting support for a special needs child takes a lot of hard work, unrelenting persistence and constant advocacy. She reflected, “it was the hardest part of my entire life. Just trying to get him help, trying to make sure that he was safe and that he was getting what he needed; trying to figure out what he needed.”
This diagnosis, however, was not the end of the family’s journey. One of the challenges of understanding autism is the level of variability in how the condition expresses itself. Autism spectrum disorder is defined as when a person fulfills two requirements, firstly, they have difficulty communicating and socializing, and secondly, they have a set of inflexible or repetitive behaviours. This captures an infinite number of ways in which autistic traits could show up.
Autism has, historically, been hard to recognize and diagnose because every individual has a slightly different presentation. As McCleary learned more about autism and the diversity of autistic traits, she recognized signs that her son wasn’t the only family member who might be neurodivergent. There is growing evidence that autism runs in families, so when McCleary’s second son started to show signs that he was having trouble communicating, she had a sense of déja vu. “My second son is two years younger. As he was growing up, he was very shy, he was very late to talk, and I saw some of the same behaviours in him.” This time it took a lot longer to get answers. Her son was eleven years old by the time he received a formal diagnosis.
As time went on, McCleary’s experiences meeting other families and people with autism through her advocacy work at Autism Canada led to some important self-reflection. “I learned more about autism and how autism displays itself. Speaking to other adults on the spectrum is when I realized that a lot of myself could be explained with autism.” At the grand age of 41 years old, she booked herself for an autism assessment.
After two long days of extensive interviews, McCleary’s assessor diagnosed her with both ADHD and autism. While many find the level of introspection involved in the process grueling, for McCleary it was ultimately a liberating experience, helping her to see her past in a new light.
“When I received my diagnosis, I had to kind of go back, and it’s interesting because it’s almost like you have to reevaluate being a child and experiencing friendships and reframing my entire life based on my identity rather than something else. So there’s a process.” She later explained, “I realized that the exhaustion and the depression and all of those things that I felt as a mom of little kids, a lot of that was explained by Autism.”
Armed with this insight and a parent’s desire to give their kids a better time growing up than they did, McCleary recognized that her teenaged daughter reminded her of herself in more ways than you might expect “she was diagnosed with ADHD when she was eight, but I took her back in and they were able to diagnose her autism. So, yeah, it’s been very interesting having kind of all those diagnoses over the different periods of their lives, and to see how each of them displays autism, it‘s so different.”
Our growing appreciation for the range of ways autism manifests is making experiences of adult diagnosis, like those of McCleary and her daughter, more common than you might expect, “actually, that is often how it happens with adults who are diagnosed […] they’re learning to see what autism looks like, and then they are finding those connections in themselves.”
So are we seeing a rising number of autism spectrum disorder diagnoses because the medical field is now getting to grips with the idea that there isn’t a single way that an autistic person looks?
McCleary responds to the idea that rates of autism are increasing: “The predominant opinion is, it’s an epidemic. Why is this coming out so much? It’s because people know what they’re looking for. All we’re doing is diagnosing people who’ve gone undiagnosed for the past 150 years. So it was there all along. We just didn’t look; we didn’t know about it.”
Along with our improving understanding of the ways autism expresses itself, researchers have been working hard to find out what’s behind this set of behaviours. In the last fifteen years as DNA sequencing technology has improved, the genetic component of autism has become more and more obvious. For families like the McClearys, spotting the hereditary aspect of autism is a no-brainer. “When you have more than one child in Ontario, they request blood work. There’s a program through Sick Kids Hospital in Toronto where they’re trying to find that genetic link. They’re trying to identify the genes that cause autism.” She explained, going on to recount how her kids contributed DNA samples to the project.
Autism scientists based at Sick Kids Hospital, Toronto, Canada have long suspected that this neurodevelopmental condition comes about because of different combinations of genes. In an effort to track down what makes an autistic person’s brain develop differently from another person, the researchers have been running a decades-long effort to collect DNA samples from families with more than one autistic member.
Recently, this long-running DNA sampling scheme has begun to bear fruit. Just this year, the Sick Kids research team published their findings. In a research paper published in The American Journal of Human Genetics, they argue that more males than females are affected by autism, and this is because of genes carried on the X chromosome.
DNA sequencing studies and epidemiological evidence are rapidly bringing the picture into sharper focus. Epidemiologists have been able to use data gleaned from national health records to show that a child’s autism diagnosis correlates far more to a family history of autistic traits than it does to any single environmental factor. Sibling studies are becoming an increasingly useful tool to exclude a host of suggested causes. McCleary is all for this research reaching a wider audience. “This is one of my things that I absolutely will try and tell everyone. Because the fact is, when you have one child with autism, you are likely to have more. You know, just seeing the link between parents and their children who were diagnosed is ridiculously high.”
While McCleary and her family are keenly aware of these rapid advances, public perception, on the other hand, is not keeping pace. This has lead to a frustrating experience for autistic people and advocacy groups. Campaigners are still battling out-of-date ideas about how autism comes about and what it is.
McCleary described her frustration with the direction public debate has followed “From the vaccines, to your diet, exposure to certain chemicals, and everything. Everybody’s looking for something to blame. And they think that if they can avoid these things, it won’t happen to them. And moms are the easiest thing to blame.”
She continued, “ It made me angry because you’ve got people who are saying they tried something, and their autism went away. And, like, that’s just not the reality of autism. It’s not something that can be fixed or repaired; it is what it is, and it’s the identity of a person. So changing part of a lifestyle, it’s not going to change your genetics.”
Addressing the idea that autism could be caused by exposure to chemicals in the womb or medical choices made by parents, she explained, “as a mother, when you’ve got a brand new baby, everyone is trying to inject you with as much fear as humanly possible. Just right from the beginning, there is so much that people throw at you that isn’t necessarily true.”
Uninformed takes on the causes of autism, McCleary explained, are more than just ignorant; they can do real harm. “You know, because of that narrative, people don’t know much about autism. If somebody says, “Oh, you can do this,” then some people will take that to heart. So I mean, the things that people have done to children trying to break the autism out of them is ridiculous. It’s scary.” She continued, “that is just not how it works if your child is genetically designed to be who they are. There’s no changing that genetic design. It’s no different than you know having blue eyes or brown eyes. Changing the view of autism is what will help the most.”
So what does McCleary think needs to change regarding how we approach autism?
“Now, if you say your child is autistic, most people think, Oh, I’m so sorry. Like it’s it’s seen as a tragedy, essentially.
“The majority of autistic individuals, especially adults or people who grow into autism, are highly successful people who are, you know, they’re policy-makers. They’re the ones that are doing these things that linear minds can’t accomplish,” she explains, “So you know, if somebody says your child’s autistic, well, that could be anything. They could be a rocket scientist. There is no limit to what people can accomplish when they’re autistic. So it’s not something that people should be afraid of.
“People with autism aren’t broken. There’s nothing wrong with people with autism. We don’t need to be fixed. We see the world in a different way, and that’s really what autism is. It’s just our brain works in a way that makes things more colourful, or, you know, louder, or brighter, that it makes us special, not broken. So if someone is afraid for their child because they’re autistic, there’s no limits on what that child can do regardless of their diagnosis.
“There are phenomenal artists or phenomenal musicians and professors at universities. So it’s not something that they need to be afraid of. It’s just, it’s a challenge, like any other challenge as a parent you’re going to have to face. And there may be other ways that parents need to adapt to raising that child, but it’s not like their child is broken. And there’s a whole world of people out there that are exactly like those children, and the community is amazing.”
What’s needed isn’t a cure, she says, but for society to hold out a helping hand to those who need it. When it comes to acceptance of autism and the support autistic people need, she explained, “there’s not enough of it. This goes for every parent and school; there’s not enough of a collaborative relationship. So there’s not a lot of that understanding where a teacher can say maybe this child that I’m seeing is not the child that I need to teach, it’s the child they’re hiding, that I’m not seeing that I need to teach.
“Only the primary caregivers know that. Wherever that child feels safe is where they’re going to unmask, and that is where that true person is. So it’s important for that relationship to be mutual, and for openness, I guess, with schools and teachers and principals to what parents are saying, because they’re not all helicopter parents. They’re not all trying to make everything about their child. They just need someone to show them that they see that hidden child too.
We just want them to have the best experience possible.”
Her final message? This one is for the moms. “There are people who can help, especially with mothers, new mothers, young mothers, who are dealing with all of these things and who don’t know who to trust because they’re getting messages that might not necessarily be based in reality. There are places that can help and that have people who know what they’re going through. Just going to somewhere like Autism Canada, and finding those resources or getting connected with peer support groups or anything like that is a huge help.
“The first thing that a mother needs to remember is that she needs to take care of herself too. And if that means finding that support system, whether it’s provincial organization or national organization or local it’s impossible to do it without help and without support.”
If you want to learn more about Autism Canada and their advocacy, visit them here.
Ed: MNB thanks Jamie for her kindness, her generosity with her time and her patience.
In a fascinating interview, McCleary opens a window into her experience of life with autistic kids, self-discovery and the challenges of a world fixated on easy answers.
Note: quotes have been edited for space and clarity.
Jamie McCleary’s family first encountered autism when her eldest son was three years old. “I knew something was different about him when I was pregnant. He was extremely active, beyond anything I had ever thought possible. Then, when he was born, he had a lot of sensitivity; he wanted to be held very tightly, so he was strapped to my chest 24/7. He had problems sleeping, and there was a lot of other things that just kind of added up to that,” she recalls.
Three years of nurse and community worker visits eventually led to a local non-government organization, Community Living, helping McCleary and her family access an autism assessment. McCleary’s experience is not unusual. For many parents, getting support for a special needs child takes a lot of hard work, unrelenting persistence and constant advocacy. She reflected, “it was the hardest part of my entire life. Just trying to get him help, trying to make sure that he was safe and that he was getting what he needed; trying to figure out what he needed.”
This diagnosis, however, was not the end of the family’s journey. One of the challenges of understanding autism is the level of variability in how the condition expresses itself. Autism spectrum disorder is defined as when a person fulfills two requirements, firstly, they have difficulty communicating and socializing, and secondly, they have a set of inflexible or repetitive behaviours. This captures an infinite number of ways in which autistic traits could show up.
Autism has, historically, been hard to recognize and diagnose because every individual has a slightly different presentation. As McCleary learned more about autism and the diversity of autistic traits, she recognized signs that her son wasn’t the only family member who might be neurodivergent. There is growing evidence that autism runs in families, so when McCleary’s second son started to show signs that he was having trouble communicating, she had a sense of déja vu. “My second son is two years younger. As he was growing up, he was very shy, he was very late to talk, and I saw some of the same behaviours in him.” This time it took a lot longer to get answers. Her son was eleven years old by the time he received a formal diagnosis.
As time went on, McCleary’s experiences meeting other families and people with autism through her advocacy work at Autism Canada led to some important self-reflection. “I learned more about autism and how autism displays itself. Speaking to other adults on the spectrum is when I realized that a lot of myself could be explained with autism.” At the grand age of 41 years old, she booked herself for an autism assessment.
After two long days of extensive interviews, McCleary’s assessor diagnosed her with both ADHD and autism. While many find the level of introspection involved in the process grueling, for McCleary it was ultimately a liberating experience, helping her to see her past in a new light.
“When I received my diagnosis, I had to kind of go back, and it’s interesting because it’s almost like you have to reevaluate being a child and experiencing friendships and reframing my entire life based on my identity rather than something else. So there’s a process.” She later explained, “I realized that the exhaustion and the depression and all of those things that I felt as a mom of little kids, a lot of that was explained by Autism.”
Armed with this insight and a parent’s desire to give their kids a better time growing up than they did, McCleary recognized that her teenaged daughter reminded her of herself in more ways than you might expect “she was diagnosed with ADHD when she was eight, but I took her back in and they were able to diagnose her autism. So, yeah, it’s been very interesting having kind of all those diagnoses over the different periods of their lives, and to see how each of them displays autism, it‘s so different.”
Our growing appreciation for the range of ways autism manifests is making experiences of adult diagnosis, like those of McCleary and her daughter, more common than you might expect, “actually, that is often how it happens with adults who are diagnosed […] they’re learning to see what autism looks like, and then they are finding those connections in themselves.”
So are we seeing a rising number of autism spectrum disorder diagnoses because the medical field is now getting to grips with the idea that there isn’t a single way that an autistic person looks?
McCleary responds to the idea that rates of autism are increasing: “The predominant opinion is, it’s an epidemic. Why is this coming out so much? It’s because people know what they’re looking for. All we’re doing is diagnosing people who’ve gone undiagnosed for the past 150 years. So it was there all along. We just didn’t look; we didn’t know about it.”
Along with our improving understanding of the ways autism expresses itself, researchers have been working hard to find out what’s behind this set of behaviours. In the last fifteen years as DNA sequencing technology has improved, the genetic component of autism has become more and more obvious. For families like the McClearys, spotting the hereditary aspect of autism is a no-brainer. “When you have more than one child in Ontario, they request blood work. There’s a program through Sick Kids Hospital in Toronto where they’re trying to find that genetic link. They’re trying to identify the genes that cause autism.” She explained, going on to recount how her kids contributed DNA samples to the project.
Autism scientists based at Sick Kids Hospital, Toronto, Canada have long suspected that this neurodevelopmental condition comes about because of different combinations of genes. In an effort to track down what makes an autistic person’s brain develop differently from another person, the researchers have been running a decades-long effort to collect DNA samples from families with more than one autistic member.
Recently, this long-running DNA sampling scheme has begun to bear fruit. Just this year, the Sick Kids research team published their findings. In a research paper published in The American Journal of Human Genetics, they argue that more males than females are affected by autism, and this is because of genes carried on the X chromosome.
DNA sequencing studies and epidemiological evidence are rapidly bringing the picture into sharper focus. Epidemiologists have been able to use data gleaned from national health records to show that a child’s autism diagnosis correlates far more to a family history of autistic traits than it does to any single environmental factor. Sibling studies are becoming an increasingly useful tool to exclude a host of suggested causes. McCleary is all for this research reaching a wider audience. “This is one of my things that I absolutely will try and tell everyone. Because the fact is, when you have one child with autism, you are likely to have more. You know, just seeing the link between parents and their children who were diagnosed is ridiculously high.”
While McCleary and her family are keenly aware of these rapid advances, public perception, on the other hand, is not keeping pace. This has lead to a frustrating experience for autistic people and advocacy groups. Campaigners are still battling out-of-date ideas about how autism comes about and what it is.
McCleary described her frustration with the direction public debate has followed “From the vaccines, to your diet, exposure to certain chemicals, and everything. Everybody’s looking for something to blame. And they think that if they can avoid these things, it won’t happen to them. And moms are the easiest thing to blame.”
She continued, “ It made me angry because you’ve got people who are saying they tried something, and their autism went away. And, like, that’s just not the reality of autism. It’s not something that can be fixed or repaired; it is what it is, and it’s the identity of a person. So changing part of a lifestyle, it’s not going to change your genetics.”
Addressing the idea that autism could be caused by exposure to chemicals in the womb or medical choices made by parents, she explained, “as a mother, when you’ve got a brand new baby, everyone is trying to inject you with as much fear as humanly possible. Just right from the beginning, there is so much that people throw at you that isn’t necessarily true.”
Uninformed takes on the causes of autism, McCleary explained, are more than just ignorant; they can do real harm. “You know, because of that narrative, people don’t know much about autism. If somebody says, “Oh, you can do this,” then some people will take that to heart. So I mean, the things that people have done to children trying to break the autism out of them is ridiculous. It’s scary.” She continued, “that is just not how it works if your child is genetically designed to be who they are. There’s no changing that genetic design. It’s no different than you know having blue eyes or brown eyes. Changing the view of autism is what will help the most.”
So what does McCleary think needs to change regarding how we approach autism?
“Now, if you say your child is autistic, most people think, Oh, I’m so sorry. Like it’s it’s seen as a tragedy, essentially.
“The majority of autistic individuals, especially adults or people who grow into autism, are highly successful people who are, you know, they’re policy-makers. They’re the ones that are doing these things that linear minds can’t accomplish,” she explains, “So you know, if somebody says your child’s autistic, well, that could be anything. They could be a rocket scientist. There is no limit to what people can accomplish when they’re autistic. So it’s not something that people should be afraid of.
“People with autism aren’t broken. There’s nothing wrong with people with autism. We don’t need to be fixed. We see the world in a different way, and that’s really what autism is. It’s just our brain works in a way that makes things more colourful, or, you know, louder, or brighter, that it makes us special, not broken. So if someone is afraid for their child because they’re autistic, there’s no limits on what that child can do regardless of their diagnosis.
“There are phenomenal artists or phenomenal musicians and professors at universities. So it’s not something that they need to be afraid of. It’s just, it’s a challenge, like any other challenge as a parent you’re going to have to face. And there may be other ways that parents need to adapt to raising that child, but it’s not like their child is broken. And there’s a whole world of people out there that are exactly like those children, and the community is amazing.”
What’s needed isn’t a cure, she says, but for society to hold out a helping hand to those who need it. When it comes to acceptance of autism and the support autistic people need, she explained, “there’s not enough of it. This goes for every parent and school; there’s not enough of a collaborative relationship. So there’s not a lot of that understanding where a teacher can say maybe this child that I’m seeing is not the child that I need to teach, it’s the child they’re hiding, that I’m not seeing that I need to teach.
“Only the primary caregivers know that. Wherever that child feels safe is where they’re going to unmask, and that is where that true person is. So it’s important for that relationship to be mutual, and for openness, I guess, with schools and teachers and principals to what parents are saying, because they’re not all helicopter parents. They’re not all trying to make everything about their child. They just need someone to show them that they see that hidden child too.
We just want them to have the best experience possible.”
Her final message? This one is for the moms. “There are people who can help, especially with mothers, new mothers, young mothers, who are dealing with all of these things and who don’t know who to trust because they’re getting messages that might not necessarily be based in reality. There are places that can help and that have people who know what they’re going through. Just going to somewhere like Autism Canada, and finding those resources or getting connected with peer support groups or anything like that is a huge help.
“The first thing that a mother needs to remember is that she needs to take care of herself too. And if that means finding that support system, whether it’s provincial organization or national organization or local it’s impossible to do it without help and without support.”
If you want to learn more about Autism Canada and their advocacy, visit them here.
Ed: MNB thanks Jamie for her kindness, her generosity with her time and her patience.
