Autism Acceptance Month gives us a chance to move beyond awareness
Dr. Jay-Sheree Allen is a family medicine physician practicing in central Minnesota and the host of the Millennial Health podcast.
Courtesy of Dr. Jay-Sheree Allen.
April is Autism Acceptance Month. Most of us likely know someone who is on the autism spectrum, so Mayo Clinic family medicine physician Dr. Jay Sheree Allen joined MPR News host Cathy Wurzer to talk about supporting the people with autism in our lives.
Use the audio player above to listen to the full conversation.
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Audio transcript
CATHY WURZER: You may know that April is Autism Acceptance Month. Now most of us likely know someone who is on the autism spectrum, so we thought it would be a good idea to check in with our friend, Dr. Jay-Sheree Allen, about supporting the people with autism in our lives. Dr. Jay is a family medicine physician at Mayo Clinic and also a podcaster. Dr. Jay, welcome back.
JAY-SHEREE ALLEN: Oh, thank you so much for having me, Cathy.
CATHY WURZER: We should say that the figures show that 1 in 36 children in this country are diagnosed with what's called autism spectrum disorder. That's from the CDC. There are about-- oh gosh, almost 6 million autistic adults in the US. Can you tell us though, what specifically classifies someone as being on the spectrum?
JAY-SHEREE ALLEN: Yes. So just that word, spectrum-- autism spectrum disorder-- that refers to a wide range of symptoms and severity-- but symptoms and severity of neurodevelopmental disorders, or simply put, conditions related to brain development that impact how a person perceives the world or socializes with others. You'll see things like social interaction challenges, verbal and nonverbal communication challenges, sometimes some repetitive behaviors, or even responses to sensory stimuli that are a bit atypical. And again, this lives on a spectrum.
CATHY WURZER: From severe to-- not as, right?
JAY-SHEREE ALLEN: Yes, from severe to mild-- to mild, to, absolutely not obvious to the average individual without medical training.
CATHY WURZER: Does autism affect any specific group of people more than others?
JAY-SHEREE ALLEN: So all racial, ethnic, and socioeconomic groups are impacted by autism spectrum disorders. We actually see it more though in boys. So boys are four times more likely to have a diagnosis of autism than girls. There are some research-- as research is improving and increasing in the field-- there's especially a paper that came out in The Pediatrics Journal in January of this year, that shows there are some disparities that we're noting with diagnosis. But right now, what we're seeing are more boys than girls.
CATHY WURZER: There's a lot of misinformation out there, I think, about what causes autism. Do medical professionals know what makes someone more likely to be on the spectrum?
JAY-SHEREE ALLEN: So everyone hates this answer because everyone wants the-- the is it, and this is how you eliminate it. But the short answer is, we honestly don't have one specific cause. The truth is, with the complexity of this disorder, having so many symptoms or such a range of symptoms and severity, there are probably multiple causes.
Right now, the leading players are, is this a genetic issue versus environmental. We're seeing some people who are higher risk, like children of older parents. There are certain medical conditions that seem to be linked. Family history-- so a child in one family, likely to have another child in that same family. But one clear-cut reason does not exist.
CATHY WURZER: You've heard of course-- and many of us have heard the term neurodivergent. It's gained popularity in recent years. What does that mean? And do you think-- double question here-- what does it mean? What do you think it is-- has it helped foster more acceptance for people with autism?
JAY-SHEREE ALLEN: Yes, buzzwords! There are a couple of these new buzzwords that are coming out. Neurodivergent is one, psychological safety another one. But what this is essentially referring to is a diversity or a variation of cognitive functioning in all people.
So it's essentially trying to describe the idea that people experience and they interact with the world around them in many different ways. And there is no one right way of thinking or learning or behaving. And these differences-- they're not viewed as deficits. It's on this spectrum.
CATHY WURZER: And that's why the Autism Society of America changed the name of this month from Autism Awareness Month to Autism Acceptance Month. You know?
JAY-SHEREE ALLEN: Yes.
CATHY WURZER: I'm wondering if we can talk a bit about the conversations shifting to around treating autism. Remember, doctors would treat autism. So now are medical professionals supporting-- approaching the support of autistic children and adults-- instead of treating them, they're supporting them. You know what I'm saying?
JAY-SHEREE ALLEN: Yes, yes I-- and language matters. So your question is great because language matters. The way in which you frame things can help to shift the stigma and the culture around it. So I think it's important that we talk more about acceptance and about support as opposed to using more stigmatizing language.
So the most important thing is to bring this to the attention of your pediatrician or family physician during either a well-child visit, or whenever you have a visit scheduled, if as a parent you are concerned. There are interventions. And if they're implemented earlier in life, they can help with behavioral skills, language development, communication skills.
There are home-based and school-based plans that can be tailored, again, based on the needs of an individual or child and where they fall on that spectrum. So it's important to bring this up as early as possible. And then there are also specialists who, this is what they do. Some of our child psychiatrists and psychologists, pediatric neurologists, and developmental pediatricians-- so there is support available.
CATHY WURZER: Do you have signs that new parents would want to watch for if they think their young child might be having some potential problems?
JAY-SHEREE ALLEN: Mmm-hmm, absolutely. Again, on a spectrum, right?
CATHY WURZER: Right.
JAY-SHEREE ALLEN: So I don't want to pathologize the range of normal behaviors. But things like, does your child respond? And this is under the age of three, so typically under the age of three.
Are they responding when their name is called? Do they have an interest in playing with others? How do they react to sensory stimuli? Do bright lights and loud sounds really disturb them more than you would expect?
Those sorts of subtle hints I think are really important to pick up on. When you present for a well-child visit, there are some questions that you'll have to answer, depending on the age of your child, to ensure that they're meeting their developmental milestones. If they're not hitting those markers, I think it's worth at least putting the question in your mind. Might not be the definitive answer, but it's worth questioning, is there more to this.
CATHY WURZER: All right. Dr. Jay, always a pleasure. Thanks for the good information. We appreciate it.
JAY-SHEREE ALLEN: Thank you so much for having me, Cathy.
CATHY WURZER: That was Dr. Jay-Sheree Allen. She's a family medicine physician at Mayo Clinic.
JAY-SHEREE ALLEN: Oh, thank you so much for having me, Cathy.
CATHY WURZER: We should say that the figures show that 1 in 36 children in this country are diagnosed with what's called autism spectrum disorder. That's from the CDC. There are about-- oh gosh, almost 6 million autistic adults in the US. Can you tell us though, what specifically classifies someone as being on the spectrum?
JAY-SHEREE ALLEN: Yes. So just that word, spectrum-- autism spectrum disorder-- that refers to a wide range of symptoms and severity-- but symptoms and severity of neurodevelopmental disorders, or simply put, conditions related to brain development that impact how a person perceives the world or socializes with others. You'll see things like social interaction challenges, verbal and nonverbal communication challenges, sometimes some repetitive behaviors, or even responses to sensory stimuli that are a bit atypical. And again, this lives on a spectrum.
CATHY WURZER: From severe to-- not as, right?
JAY-SHEREE ALLEN: Yes, from severe to mild-- to mild, to, absolutely not obvious to the average individual without medical training.
CATHY WURZER: Does autism affect any specific group of people more than others?
JAY-SHEREE ALLEN: So all racial, ethnic, and socioeconomic groups are impacted by autism spectrum disorders. We actually see it more though in boys. So boys are four times more likely to have a diagnosis of autism than girls. There are some research-- as research is improving and increasing in the field-- there's especially a paper that came out in The Pediatrics Journal in January of this year, that shows there are some disparities that we're noting with diagnosis. But right now, what we're seeing are more boys than girls.
CATHY WURZER: There's a lot of misinformation out there, I think, about what causes autism. Do medical professionals know what makes someone more likely to be on the spectrum?
JAY-SHEREE ALLEN: So everyone hates this answer because everyone wants the-- the is it, and this is how you eliminate it. But the short answer is, we honestly don't have one specific cause. The truth is, with the complexity of this disorder, having so many symptoms or such a range of symptoms and severity, there are probably multiple causes.
Right now, the leading players are, is this a genetic issue versus environmental. We're seeing some people who are higher risk, like children of older parents. There are certain medical conditions that seem to be linked. Family history-- so a child in one family, likely to have another child in that same family. But one clear-cut reason does not exist.
CATHY WURZER: You've heard of course-- and many of us have heard the term neurodivergent. It's gained popularity in recent years. What does that mean? And do you think-- double question here-- what does it mean? What do you think it is-- has it helped foster more acceptance for people with autism?
JAY-SHEREE ALLEN: Yes, buzzwords! There are a couple of these new buzzwords that are coming out. Neurodivergent is one, psychological safety another one. But what this is essentially referring to is a diversity or a variation of cognitive functioning in all people.
So it's essentially trying to describe the idea that people experience and they interact with the world around them in many different ways. And there is no one right way of thinking or learning or behaving. And these differences-- they're not viewed as deficits. It's on this spectrum.
CATHY WURZER: And that's why the Autism Society of America changed the name of this month from Autism Awareness Month to Autism Acceptance Month. You know?
JAY-SHEREE ALLEN: Yes.
CATHY WURZER: I'm wondering if we can talk a bit about the conversations shifting to around treating autism. Remember, doctors would treat autism. So now are medical professionals supporting-- approaching the support of autistic children and adults-- instead of treating them, they're supporting them. You know what I'm saying?
JAY-SHEREE ALLEN: Yes, yes I-- and language matters. So your question is great because language matters. The way in which you frame things can help to shift the stigma and the culture around it. So I think it's important that we talk more about acceptance and about support as opposed to using more stigmatizing language.
So the most important thing is to bring this to the attention of your pediatrician or family physician during either a well-child visit, or whenever you have a visit scheduled, if as a parent you are concerned. There are interventions. And if they're implemented earlier in life, they can help with behavioral skills, language development, communication skills.
There are home-based and school-based plans that can be tailored, again, based on the needs of an individual or child and where they fall on that spectrum. So it's important to bring this up as early as possible. And then there are also specialists who, this is what they do. Some of our child psychiatrists and psychologists, pediatric neurologists, and developmental pediatricians-- so there is support available.
CATHY WURZER: Do you have signs that new parents would want to watch for if they think their young child might be having some potential problems?
JAY-SHEREE ALLEN: Mmm-hmm, absolutely. Again, on a spectrum, right?
CATHY WURZER: Right.
JAY-SHEREE ALLEN: So I don't want to pathologize the range of normal behaviors. But things like, does your child respond? And this is under the age of three, so typically under the age of three.
Are they responding when their name is called? Do they have an interest in playing with others? How do they react to sensory stimuli? Do bright lights and loud sounds really disturb them more than you would expect?
Those sorts of subtle hints I think are really important to pick up on. When you present for a well-child visit, there are some questions that you'll have to answer, depending on the age of your child, to ensure that they're meeting their developmental milestones. If they're not hitting those markers, I think it's worth at least putting the question in your mind. Might not be the definitive answer, but it's worth questioning, is there more to this.
CATHY WURZER: All right. Dr. Jay, always a pleasure. Thanks for the good information. We appreciate it.
JAY-SHEREE ALLEN: Thank you so much for having me, Cathy.
CATHY WURZER: That was Dr. Jay-Sheree Allen. She's a family medicine physician at Mayo Clinic.
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