Unbabbled: Autism Spectrum Disorder 101

Autism Spectrum Disorder 101 with Dr. Cathy Guttentag

According to the CDC’s Autism and Developmental Disabilities Monitoring Network, an estimated 1 in 59 children in the U.S. have a diagnosis of autism spectrum disorder (1 in 37 boys and 1 in 151 girls). While the prevalence of autism has increased over the past decade, it’s still a confusing, overwhelming and unfamiliar diagnosis for many families.
In this episode, we speak with Cathy Guttentag, PhD, to learn what ASD is, common misconceptions, and the red flags for identification. Additionally, Cathy shares resources for parents, including where to obtain an evaluation, what to expect during the evaluation process, and which services/therapies are often recommended for children on the autism spectrum.

About Dr. Guttentag

Dr. Guttentag is a licensed Clinical Child Psychologist and an Associate Professor of Pediatrics at the Children’s Learning Institute at the University of Texas Health Science Center. She received her master’s and doctorate degrees in clinical child psychology from Pennsylvania State University and completed a post-doctoral fellowship at Texas Children’s Hospital. She specializes in providing diagnostic and developmental evaluations to infants and children with possible or diagnosed autism spectrum disorder. Dr. Guttentag has expertise in testing very young children and works collaboratively with parents to determine the most appropriate intervention plans and approaches to emotional and behavioral issues.

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Stephanie
Hello and welcome to Unbabbled, a podcast that navigates the world of special education, communication delays and learning differences. We are your hosts, Stephanie Landis and Meredith Krimmel, and we're certified speech language pathologists who spend our days at The Parish School in Houston helping children find their voices and connect with the world around them. Did you know that an estimated 1 in 59 children in the U. S. have a diagnosis of autism spectrum disorder with an increased to 1 and 37 for boys? However, even with such high prevalence of autism, it continues to be a confusing, overwhelming and often misunderstood diagnosis. In this episode, Dr Cathy Guttentag speaks to us about autism spectrum disorder. Dr. Guttentag is a licensed clinical child psychologist and an associate professor of pediatrics at the Children's Learning Institute at the University of Texas Health Science Center in Houston. She specializes in providing diagnostic and developmental evaluations to infants and children with possible or diagnosed autism spectrum disorder. She has expertise and testing very young children, and in working collaboratively with parents to determine intervention plans and approaches. During our chat, we discuss what autism spectrum disorder is, red flags for parents and educators to look for, and resources for parents, including where to obtain an evaluation, what to expect during an evaluation and which therapies are often recommended. We also discuss common misconceptions people often associate with autism. Welcome. Today on the podcast we have Dr. Cathy Guttentag. Welcome to the podcast. We're so excited to have you here today.


Cathy
Thank you. I'm excited to be here.


Stephanie
Today we'll be focusing on autism and autism spectrum disorders. Can you give us a little bit of background on your experience with autism?


Cathy
Sure. I am a clinical child psychologist at the University of Texas, part of the Children's Learning Institute, and the clinic, which is called the Center for Autism and Related Conditions. And I have been in practice since about 2001 and have been seeing children with autism for many years, and we primarily focus on at our clinic on early diagnosis and giving parents recommendations and referrals for where to go to get the best help for their children.


Stephanie
You said that one of the areas you specialize in is early diagnosis. Can you give us a few red flags or things for people to look out for in early childhood?


Cathy
Sure, um, you know, research is showing that earlier and earlier we can start to look for a typical development in very young children. Some children are showing differences in their development as early as one year old. Sometimes there is a change in children's development between 18 months and two years old, and some of the very early things that we look for our things like eye contact, interest in social communication with other people. Do they look at you? Do they smile back at you when you smile? Are they showing interest in other children and their siblings watching what's going on around them? We may also see language delay, where Children are not babbling or not starting to form real words. And sometimes we see an area of regression where maybe a child was saying a few words, starting to point, starting to use gestures and then they stop or lose some of the skills that they had that's certainly a red flag. When that happens, we also may see repetitive behaviors either repetitive behaviors that they do with their hands and arms, such as flapping their arms or twiddling or wiggling their fingers or staring at their hands, we might see spinning around in circles. We might see repetitive jumping and bouncing. And then also children may do repetitive behaviors with objects. They may play with toys in a very repetitive way where they just want to stack things up. Or they just want to put things in a line instead of playing with them in the functional and pretend ways that most children would play. So some of those things air, maybe early signs of autism.


Stephanie
And things like smiling and watching the mom and dad or brother and sister and that joint attention of eye contact. What age does that typically developing kids?


Cathy
Well, really. You should start to see joint attention before age one, and it should be very solid by age one. Joint attention basically means looking at the person and then looking back to something that there that you're showing interest in pointing following. I gaze that that kind of triangular interaction where you and the baby are looking and and focusing and commenting on the same thing at the same time. You can start to see these signs really, really early even in the first year of life.


Stephanie
Yeah, oftentimes kids develop gestural language and communication before they start talking with the pointing and waving and can not doing some of those gestures be an early sign?


Cathy
Absolutely, most children are waving bye bye bye around one year old. They're starting to point also around one year or a little later. If children are not developing those gestural nonverbal communication skills, then that's something that we want to pay attention to as well.


Meredith
And if a child is showing some of these signs, or if a parent is concerned, where should they go or what should they do?  


Cathy
Well, the first thing I would say is to start to document your concerns, write them down so that you have a little running list of things that are really specific that you can say to whomever you're going to consult with. The first stop is often your pediatrician. You don't even have to wait till a well child check up. If you don't have one coming up very soon, contact your pediatrician's office and ask for a new appointment just to talk about your developmental concerns. Pediatricians will do that even if you're not due for a checkup, and then if your pediatrician refers you to early childhood intervention or child psychologist or developmental pediatrician, then you may need to follow up and make sure that that appointment happens that you are being scheduled that you are getting in to see that specialist. Sometimes pediatricians can be a little conservative. They may want you to wait and see. They may provide reassurance. And if you still feel like your concerns are not being heard, or your pediatrician is not taking you seriously, then you need to be an advocate for your child. You need to speak up again. You need to ask specifically for a referral. You are also able to contact early childhood intervention, ECI, which is a free public service to have your child evaluated, and I can give you that resource link for how parents confined there local ECI program and make their own referral. Um, there is also a website called emchat.org, E-M-C-H-A-T  and the Emchat is a little screening measure that parents can fill out online again for free. That will ask you about certain early signs that may indicate that your child should have a full evaluation for autism. And that's something that parents can do proactively if they have a concern. Parents Pediatrician should also be screening with emchat at the 18 month well child visit and at the 24 month well, child visit so that they will know whether there are some red flags in this child that warrant a referral to a specialist.


Stephanie
I love that point of starting to document and write things down, and don't think that anybody is mentioned that previously, and it is so helpful as you get into the appointment and you're talking and your kids were looking around trying to dive off of the table and you forget all of the things and they ask and you're like, Well, they're kind of not doing this, And if you write it down, then you have things and bullet points that you can specifically ask. I know a few times I've gone into the pediatrician with, like, two questions written down, and I'm like, I cannot let myself leave until I ask these questions and I also like that you said to continue to be your own advocate. Part of the thing with going into the pediatrician, especially at such a young age, like a year, 18 months, there tends to be a big range of, you know, normal quote unquote. And I think that pediatricians often are a little more on the conservative side just because it is really young to, you know, frightened parents or bring up a concern if there isn't one. Are there any specific things that you think for parents are a little more of a high indicator that there probably is something going on than just some of the other areas that are have a little more leeway?


Cathy
Sure, I think one thing that is always always a concern is if your child has lost any skills. If there's any regression, if your child was saying words or using gestures and then they stop or they used to smile and do little baby games with you like peekaboo and patty cake and then they lose interest in that social connection, that's a really big concern that a pediatrician should take seriously and then any other delays in the social engagement. You know, there certainly is a wide range of, of normal and typical in terms of at what age children are saying their first words are starting to combine words. We have ranges, but they're fairly broad. But social engagement should really be there during the first year of life. They should show interest in other people. They should smile when you smile back at them by just a couple months old. And if you see your child being very flat emotionally, not really responding when you talk to them not responding to their name, that's another big red flag. Children should be responding to their name well before one year old. And if you call your child's name and they're tuning you out and you think, well, maybe my child can't hear it's often recommended to get a hearing assessment to make sure that that's not what's causing your child to be unresponsive. So audiology testing maybe indicated. But if it's not your child's hearing, and there are responding to other kinds of sounds around them, but not their name and not social engagement, then that's those a really serious concerns that you want to take seriously.  


Meredith
Can you tell us what is autism?


Cathy
So autism is considered a neuro developmental disorder, which means it has to do with the way the brain is wired up and how the brain develops connections between neurons over time. And it is thought to be, a largely a genetic condition. There's lots of research going on to look at our their environmental factors, other factors with maternal age with what happens during pregnancy with genetic predispositions? But it's definitely a condition that is seems to be present early on, maybe even prenatally, and that manifests over the first few years of life. Now, sometimes children don't get diagnosed until a little later in development if their symptoms are more mild. If they are developing language. If they are doing well cognitively that maybe those more subtle aspects of autism don't get picked up until later. But it is still something that is happening within the brain developmentally and has two major components the social language, the social communication, the eye contact, all those social features and then wrote repetitive behaviors and narrow interests. And so we look at both of those broad categories when we look at diagnosis.


Meredith
You mentioned that it's genetic and or that there's research indicating that it could be genetic. A lot of my friends and family ask me what causes autism? Do we know? Do we know what causes autism?


Cathy
That's certainly the $1,000,000 question these days, and everybody would like to know the answer. And that's one of the frequent questions that I get. Ah, and what I try to tell parents is certain things we know that do not cause autism. It does not have to do with whether mom went back to work, whether you put your child in front of a TV or not. Um, it is not caused by parenting except in the most extreme cases of neglect or a child being in an orphanage where they got no attention and stimulation. But really, classic autism is thought to be a biological condition and not something that was caused by anything that a parent did or was neglectful about. Um, so we don't know 100%. What causes autism. There are a number of genes that they think are involved in autism. There are a few identifiable syndromes, such as fragile X, tuberous sclerosis, some chromosomally micro deletion syndromes that have a high correspondence with autism. So sometimes genetic testing does reveal why this particular child has autism, and so we do routinely recommend genetics testing. However, there are a lot of kids for whom the cause is not yet known and that further research needs to be done in order to really be able to fine tune the testing that would identify why each particular child has developed autism.


Stephanie
You mentioned that one of the signs of autism could be regression of skills. I have heard through different parenting websites or just word of mouth that some people are worried because around the same time they're getting some of the vaccines that the kids start to have regressions. Have you seen research that supports this idea?


Cathy
Actually, research is quite clear at this point. There's been lots of large scale epidemiological studies from multiple countries, from multiple cohorts that are all showing that vaccines do not cause autism. And that is that is not a good reason not to vaccinate your child. There's a lot of misinformation that is still out there. There is a lot of concern that's been generated by people who either were fraudulent physicians or not physicians at all on, and then, unfortunately, these myths and incorrect information gets circulated, and it's pretty scary, and I can understand why parents would not want to do anything that might increase the risk of autism. But in this case, the research is very, very clear that vaccines are not the answer, and it is not a good thing to avoid vaccinating your child due to concern about autism.


Stephanie
One of the things you mentioned in the diagnosis is that sometimes children may not have as clear cut of social symptoms or language symptoms, and then they often get diagnosed later. I know that the diagnosis for autism has changed. Where there used to be a separate category of Asperger's. Can you talk a little bit of about the diagnostic codes now? 

 
Stephanie
In 2013 the new version of the Diagnostic Manual for Psychiatrists and Psychologists, which is called the DSM-5, came out and they made some major changes in how they wrote the section on diagnosing autism. And while we used to have multiple separate diagnostic categories such as autistic disorder, Asperger's disorder PDDNOS, now they have done away with those separate categories and everybody is under the broad umbrella term, which is called autism spectrum disorder. So that includes children who may be very high functioning and may have gotten a diagnosis of Asperger's in the past and also children who are much more impaired and would have gotten an autistic disorder diagnosis in the past. So you will still see a lot of those terms floating around because there were books written and podcasts and and all kinds of popular literature that uses Asperger's, that uses PDDNOS, but the most current term now is autism spectrum disorder or A S D.


Meredith
And who can diagnose ASD?


Cathy
So it should be a professional who has a lot of experience working with children with autism and who has training in the diagnostic process. So it could be a developmental paediatrician. It could be a child psychologist. It could be a neuropsychologist. It could be, um, a neurologist, a pediatric neurologist, and sometimes general pediatricians will put that diagnosis down in their records, but usually they want it verified by somebody who has specific expertise in that area.


Stephanie
If a parent is coming to receive an evaluation, what kind of things would they expect to have done with their child?


Cathy
So it varies a little bit, depending on what the model for that clinic is. But certainly they can expect a very thorough parent interview that's gonna ask them a lot of questions about not only their child's current behaviors and the parents current concerns about their child, but also what was their history like? So this is where documenting your concerns and writing down when did my child actually start to say her first words? When did my child smile? When did my child show interest in little baby games like Peek a Boo or Patty cake? Those are the kinds of things that are really helpful information because the person interviewing you will likely and should ask you lots of detailed information about not only what does your child do now, but what do you remember about your child's infancy and toddlerhood? And was there ever a time when things changed for them and they lost skills? You will also probably be asked about any previous evaluations that you've had and what the results of those were, any previous treatment or interventions that your child has had your child's school experience or day care experience and any important family changes that have happened that could also explain atypical behavior. Did you have any traumatic events happen? Was this child born in another country and adopted? Were there any losses or or significant things that would account for a regression in behavior or atypical development in your child? You will also be asked about biological factors. Whether the child was exposed to any drugs or alcohol during pregnancy. Was the child born on time? Were there any complications early in infancy? Your child's health history is important as well? So there's the parent interview part. And then we also want to, of course, take a direct look at the child. And there are lots of different ways that we do that. Unfortunately, there is no laboratory test right now that's foolproof for autism, so you won't go in and get a blood test to tell you with your child has autism. Nor will you get an MRI, a brain scan that will definitively tell you whether your child has autism, and if someone tries to tell you that they dio that's really not well validated by research. What we do is look very closely at the child in a variety of context. So how did they play by themselves? When you give the major appropriate toys, what do they do with toys? How did they engage with Mom or Dad? How did they engage with a friendly new adult? Sometimes there is standardized testing involved. They may look at the child's development overall by doing some developmental testing to look at your child's cognitive level. Look at your child's language, level or to look specifically in a more structured way at your child's interpersonal interactions and play skills through an assessment measure such as the A-DOS 2. But there is no one definitive test at this point for autism, including the A-DOS. Everything has to be taken all together. You can also expect to probably fill out some questionnaires about your child that asks you systematically to rate different behaviors you may or may not see in your child, so that we have a variety of documentation methods, a variety of assessment methods to get sort of a 360 look at what is your child doing? Um, and how are they progressing compared to what would be expected for your child's age level.


Stephanie
If the child's in school, do you often reach out to the school to get there? Input?

  
Cathy
I do, and that will vary again from practitioner to practitioner. But I often find it helpful, especially if I don't have a lot of documentation from the school. If I do, if I can get a look at school records, daycare records, I often ask parents to bring those with, them, share everything that they've already got. But if particularly if the child is kind of ah ah, complex case where maybe I'm not seeing as much of what the parents are reporting, um, or the parent is having difficulty reporting on what they ah, what the child does in school in different settings. I will often make a phone call to a teacher at school at child care and get their direct perspective on what is this child doing with peers in a group setting, which is something that I can't see in the office.


Meredith
And if a child does meet the requirements for a diagnosis of autism, then what are the next steps for that parents, what types of interventions would you recommend to a family?


Cathy
Okay, so there are lots of different recommendations, depending on how old the child is. What kind of service is the child is already getting? Frankly, some of it is is limited a little bit by the financial situation of the family and whether they have insurance. So there are many different treatment options and educational options for children, and it does depend on a number of factors. First of all, what's most appropriate for that child is this a child who can handle being in a group kind of school situation with many other children with a little support, or are they a child, who needs more one on one more intensive intervention and that they were not ready to benefit from being in a group situation yet? There are therapies that hopefully are covered by insurance and also is gonna depend on the parents financial situation. What kind of insurance is air covered? But we very often recommend speech therapy that's almost always a recommendation because very often children have delays in language, either in the expressive area, meaning what they can say and communicate themselves in the receptive area. What they understand of what people say to them and how well they understand things like facial expressions and gestures that other people use. And then in the pragmatics domain, which is the social aspects of language, how much do they understand about being able to read other people's facial expressions about body language and understanding, how to take turns as a speaker and a listener and so forth? So there are lots of different reasons why speech therapy maybe recommended. Some children really need a kind of there be called ABA or applied behavior analysis, And that is a very intensive one on one kind of therapy that can be done in the clinic or in the home at times. And that is really a wonderful and very well validated research proven method of working on children's basic learning skills. How to sit and attend and follow through with the task. Follow directions refrain from distracting behaviors or behaviors that are not very adaptive for learning, such as having tantrums or falling out on the floor or refusing to do something. There's lots of different skills that ABA can work on, and so that's often recommended that something that is a little bit tricky because it's covered by some insurances and not others. Although we hope that that's changing for Medicaid, Um is supposed to cover it in the near future. Um, occupational therapy is sometimes recommended. Occupational therapy can be very helpful for children who have sensory issues where they are very distracted or attracted to various things that they see or hear or wanna touch or put in their mouths. Or if they have a real strong need for deep pressure or physical stimulation and activity. Occupational therapy can very be very helpful. Oh, and then specialized educational placements, depending on again what parents have available to them. We may recommend that a more specialized school setting would be beneficial to the child. Other times they can get what they need from the public school system with some advocacy with some special education services to help them make best of use of their educational instruction.


Stephanie
Sounds like there's a lot of great options, but also very dependent on each child's need, which can probably be very overwhelming for parents at times because just googling what therapy do I do won't help you figure out what specific for your child.


Cathy
For sure. Yeah, and hopefully when you get your evaluation, the person who is doing that evaluation or the team that's doing that evaluation should discuss that as a good part of the feedback that we don't wanna have a practitioner who just says your child has autism come back in a year for follow up. We really want to ask for and be provided with really helpful recommendations for Where do I go next? What kinds of schools or therapies would be best for my child? And how do I find those?


Stephanie
When you are speaking with families after the evaluation and giving your feedback, what kind of questions do you commonly get from parents?


Cathy
I would say, um, I often get asked the question that we were talking about earlier is what causes autism. Did I do something wrong? Is this something that could have been prevented? Because parents often have a lot of guilt, a lot of concern, and so I try to allay families guilt because it's really not something that they could have prevented with the knowledge that we have now. So I know it's natural as a parent to feel like you would have wanted to prevent anything possible from happening to your child. But in this case, it's really not something that that they that we can tell them that something. It's something that I often reassure family's about. Another common question is, at what point will my child grow out of autism? Will they recover from this? Will they get better? And how long is this going to continue? And what I tell families is that from what we know now, autism is a long term type of disability. It is a developmental profile that typically takes a very long time and a lot of intervention to to remediate. And that many Children continue to have something atypical about their development. Indeed, some level of support for a very long time, sometimes even up into adulthood. Um, again, it really depends on the child's cognitive level. It depends on the child's language level, overall severity. On the other hand, there are certainly children who, with good quality intervention, go on to higher education, go on to have jobs go on to have families. There are many adults that we're just now learning about who may have an autism diagnosis and never knew it and never were diagnosed in childhood. So by all means, we want to instill hope and optimism and the, um, the prognosis is unknown at the very beginning. But as your child goes through treatment and you get a better sense of how rapidly they're responding to intervention, then over time we can get a better sense of what to expect for that child in the long term. But it is a long term concern and something that parents will have to be vigilant about and continue to work through intervention process is until such time as their child shows that they no longer need that level of support.


Stephanie
We have therapist on campus, even that work with adults. And it's just as you age and develop and your interactions with people change and the amount of language you need to use changes, that even into adulthood, sometimes they're successful people. They just continue to need a little bit of support, navigating more tricky family relationships or work relationships or the workload and case load. So, yes, it's often a lifelong or long term process.


Cathy
Absolutely. I also want to mention another question that parents often asked, is about younger siblings or older siblings. But sometimes they notice things that are different in more than one child in their family. And we do know that likely because of the genetic nature of the disorder that we do want to keep a close eye on younger siblings, even if those children are still babies and don't have any diagnosis themselves. We do know that children who are siblings of children with the diagnosis of autism are at increased risk for autism,  are increased risk for language difficulties on. And so you do want to keep an eye on all the kids in the family and make sure to monitor their development and have evaluations for those children if there are signs of concern about siblings. Another type of intervention that could be very helpful for children on the autism spectrum is called social skills therapy and social skills therapy can be provided by speech therapists, sometimes special education professionals or behavior therapist. So social skills therapy helps children work on the ways that they engage with other children primarily. So usually that will involve having a small group of children who get together and work on fun projects together, play games, build Legos, do cooking projects. And during that play, the therapists are working with the children to help each other communicate, understand other children's communications, understand the way their behavior is impacting other kids and really increase their level of insight in their level of skill at interacting as part of a pure group, which is something that many children with autism may struggle with.


Stephanie
Here we talk a lot on our campus about perspective taking, which just means understanding that other people have thoughts and feelings that are different from yours. And once you have that understanding, that theory of mind, that ability perspective, take it completely changes the way you socially interact with somebody. Because now, instead of jumping front of them to get candy first, when your trick or treating which happened here last night, you realize that that's gonna make your friends really mad or that you might knock somebody down or that they're going to be angry with you. So instead, you have that theory of mind to perspective take and understand that even though it's it's hard, you have to wait your turn and wait behind or while you're playing, The given take of play leads to the give and take of conversation, and so that all starts at a very basic level of building that perspective taking.


Cathy
Absolutely. And you can be a kid or an adult who has very good language skills or very good cognitive skills. You could be super smart and able to express yourself. And yet those more subtle aspects of social interaction eye contact. How close do you stand to somebody when you're talking? How loud a voice do you use? How do you wait your turn in conversation? Those things can still be very difficult. Ah, and really can benefit from some intervention.  


Stephanie
Understanding sarcasm


Meredith
Higher level language


Cathy
All of those things can be very good targets for for support with social skills therapy.


Meredith
I wanna ask you a little bit about hyperlexia. Um, we actually get a lot of questions about hyperlexia. Can you talk a little bit about what that is and what that might look like in children?  


Cathy
Sure, so hyperlexia is a really interesting phenomenon, and we don't quite know where this comes from, either. But what it means is that the child has very advanced reading skills for their age. Um, I have seen two year olds come in who are able to identify letters and read words. They may not know what it is that the words mean that they're saying. And so one of the concerns is that children with hyperlexia may not have the reading comprehension to go along with their ability to sort of call out words or read sentences. So it is this interesting phenomenon where children who may have delays in other areas, including delays in spoken language, seemed to be just super readers. And it's kind of fascinating. Um, parents often get very excited about it. Uh, and um, I think what we need to know about it is that while it's really great to be able to read, and we certainly want to encourage children to be able to read to their best ability, we have to take into account the context of do they understand what they're reading? How does that fit with the rest of their overall language development and their overall academic and cognitive development, and kind of see it in context because sometimes it goes along with some other atypical developments.


Meredith
Yes. So would you consider hyperlexia to be a red flag for autism?  


Cathy
It can be. It's not one of the diagnostic criteria, but sometimes you do see that. And it's this discrepancy between how well the child can read and the rest of their language related skills.


Stephanie
Are there any other things that you see often go hand in hand with kids who might be diagnosed with the autism spectrum disorder and other areas?


Cathy
Sure, it's very common for children with autism to have delays in language, both in terms of spoken language, their expressive speech and their receptive skills, Um, and pragmatic since we were talking about before that social aspect of language, we often see sensory issues where children are either very easily distressed by getting their hands dirty or by tags and clothing or by loud sounds. They may cover their ears when they hear loud sounds, or they may be kind of sensory seeking. They may do a lot of jumping and bouncing and wanting to, um, do a lot of wrestling and bumping into walls. They may put things in their mouths that are not food. So, um, we often do see sensory issues in children with autism. Picky eating is a big one, for sure, although I must say that there's a lot of picky eating in the general population as well. It's also normal for toddlers to go through a phase of decreased appetite and picky eating. So picky eating by itself is certainly not diagnostic of autism, and it it is seen in kids who don't have other atypical behaviors as well. But it's often seen in kids with autism as well, sometimes recede delays in general adaptive self help skills as well. Children who are delayed in being able to fasten their clothing or brush their own teeth or get dressed, take care of their own needs to the extent that would be appropriate for their age. So there's often a number of delays that may go along with autism. But certainly every kid is different, and there's a lot of diversity. So some children are strong in one area and weak in another.


Stephanie
Are there any mental health areas that often go together with autism spectrum disorder?


Cathy
Anxiety is very often seen in children with autism. They may be particularly anxious in situations that are busy or overwhelming, such as birthday parties, going out to public events where there's lots of people and crowds and noise. They may also be anxious because they have some sort of obsessive and perfectionistic tendencies. So when things are not exactly the way they expect or they don't have real control over exactly how things were going to go, they may become anxious. So anxiety is one that we see Ah, and then with kids who are higher functioning and older. You may see some depression as well as they get frustrated as they are smart enough to be aware socially of how they're not fitting in and they want to have friends. I think that's one of the myths too that sometimes goes along with autism is that they they are not interested in being successful socially. Many of those children really are, and they may want tohave friendships and want to do the right thing with peers. And if that's not going well for them, they may start to get frustrated and discouraged and and you can see some signs of sadness and depression that does tend to be in the kids who are higher functioning and have that level of awareness of not fitting in with other kids and really caring about that.


Meredith
As your listing some of these other associate issues, it makes me think how important it is to see a specialist if you have concerns, because a lot of the things you mentioned really alone don't diagnose or can't be used to diagnose autism spectrum disorder. But it may be a fine motor delay or just a sensory delay or, a sensory processing disorder or a language delay stand alone. So, I mean, it's very important to have really someone who could look globally at the whole child to make this diagnosis.


Cathy
Absolutely yes, you can certainly see any of these things in isolation. And if your child is showing one of those things, by no means is an indicator of of autism. But if you see several, the more things that you see that's atypical, certainly the likelihood goes up, and the more important it is, um, to take a real close look at all aspects of that child's development.


Stephanie
I have a close friend that was currently going through getting her child diagnosed, and she kept going back and forth with people around her, doctors, whether it was just attention deficit disorder or maybe autism spectrum. Do often see that those have similar looking profiles?


Cathy
Yes. I'm glad you brought that up. Interestingly, in the previous addition of the DSM, the DSM 4, um, they did not allow diagnosing both ADHD and autism. In the DSM 5, they do. So these books are written by human beings researchers, clinicians who Lauren more and more as they go along. And they try to update these manuals to reflect the most current research. Um, and so now, yes, indeed. You can have ADHD and autism spectrum disorder. Um, or you can have one, but not the other.


Stephanie
You mentioned earlier a myth about people with autism spectrum disorder that they don't want any friends. You also mentioned that there's common miss information out there about what might cause. Are there any other common misconceptions or myths that we might not have touched on? One that comes to mind is that as soon as somebody hears autism, they think of just nonverbal, really aggressive children that they don't see the whole wide spectrum.  


Cathy
Yeah, that's a good point. There's really a wide spectrum for children with autism and some of the sort of old classic portrayals of autism such as the movie Rain Man, which is now quite old but which many of us maybe grew up seeing, Um, that's one presentation. Every person with autism is different. And so, yes, there are some children who struggle with a lot of aggressive behavior who may bite themselves, who may have severe tantrums, who may be difficult to manage behaviorally. There are other children with autism who are very sweet, very easy going. Do not have those acting out behaviors. But yet they do show the social, the language, the play that is more typical of autism. So, um, so absolutely. Having a diagnosis of autism does not necessarily mean that the child has a cognitive delay. Some children are very, very smart and have autism. Um, it doesn't mean that the child is necessarily aggressive or behaviorally difficult. But often when you have difficulty with language, difficulty with social interaction, you feel uncomfortable in your body because of sensory issues. Those are some of the reasons why children may have acting out, or frustrated or aggressive behaviors because they are having a hard time, and so it's often their when they do show aggressive behaviors. It's more of a defense way of expressing frustration. And it's not that they're mean spirited or really trying to make life difficult for other people.


Stephanie
Are there any great organizations or websites that you often have parents go to for more information?


Cathy
There are and I can mention some of those, um, one of course, by the time I see them, they may have already had an Emchat, but parents should know about the website that's emchat.org, which they can fill out a little online questionnaire, um, to sort of do a little screening for autism. The website Autism Speaks is a very popular website that has a lot of good information for parents and does a lot of advocacy so that the public knows more about autism. Um, there is the Texas Autism Research and Resource Center. There's the National Institute of Mental Health, the Autism Society of America, and the Association for Science in Autism Treatment. Those are some of the reputable organizations and websites that I often refer families to to keep up to date on the latest research and reliable information about autism.


Stephanie
Yeah, that's great. Without having specific places to go often wind up turning to like Mommy Facebook groups, which is understandable. But then you do the hard work of sifting through what's reputable and what's not. And what only worked for your neighbor's neighbor's cousin instead of you know what research is showing us that works well.  


Meredith
And when you Google autism, I mean the amount of information out there. It's nice to know more direct, reputable places to go.


Cathy
Yes, and when we were talking before about some of the myths or some of the treatment options also want to mention that it's important to to really do your research on any treatment that is suggested to you, um, to see whether there is research behind it. So, for example, some kinds of treatments have really been debunked as being unhelpful, Um, and and a really a waste of time and money and effort for your child. Um, some of those include keylation therapy, hyperbaric oxygen therapy. There's some kind of far out types of treatments that, um, have been promoted, um, by people without any research backing behind them that the scientific community really recognizes as valid. So you want to be careful of not wasting your precious time and money and energy on treatments that are not well regarded and not well researched.


Stephanie
And it's understandable. There's so much information out there that it's hard to sift through. And there's so many places that promise quote unquote cures, or that this is guaranteed to make your child better. And every parent wants to make sure that their child is living up to their greatest potential. And so it's really hard on parents to figure out where to go and what to do next.


Cathy
Absolutely. And you know, one of the things that you can look for is some of the red flags about particular interventions. Often, they have really huge claims about what they say they can treat and what their results purport to be. So if you see a treatment that says this cures autism, this cures dyslexia. This cures ADHD. It's, you know, quick and painless, and, um, you want to be skeptical when something says that they are the magic pill that takes care of every possible atypical problem that your child might have. That's kind of a big red flag right there. You also want to know, Have they published their results in reputable journals? Do they have any research evidence that really shows in controlled trials that this is an effective treatment? And does the scientific community stand behind that? If it's just one physician or one practitioner or chiropractor or whatever they are, um, touting this magical cure. You want to be really careful.  


Meredith
I mean, if there was a magic cure- all, wouldn't we all do? It absolutely would be everywhere. 


Stephanie
So the end of every episode, we ask our guests that if you had one piece of advice to give to parents and it can be related to this, or it can be whatever advice you'd like, um, what would you give parents and why?


Cathy
That's a great question. Um, I think I can I do more than one. Um, I think certainly one is to be proactive in watching your child's development and, um, sharing any concerns. Speaking up to your healthcare provider, whether that's your pediatrician, nurse practitioner, whoever you see on a regular basis, speak up and ask questions and share information because remember that pediatricians may see 20 or more children every single day, and they're dealing with coughs and colds and ear infections. And if you are not speaking up about your child, some things might get missed. So you definitely want to speak up proactively and be persistent if someone's not taking your concerns seriously, Um, ask for a referral. Early childhood intervention is, um, some is a service that you can always access for children who are between the ages of birth and three years old. Once they turn 36 months, the school district is responsible for evaluating them. But between birth and three early childhood intervention is is one way that parents can have their child evaluated, even if perhaps their pediatrician or others are telling them it's not necessary. Um, and I would say that that advocacy, um, continues once you do have a diagnosis for your child, that you are the person as the parent or the grandparent who loves and cares and is invested in your child more than anybody else. And so while you may have fabulous speech therapists, or ABA therapist or pediatrician, you may end up being sort of the case manager for your child, who coordinates everything and make sure that people are talking to each other, that your child is getting to their therapy appointments. That you are asking good questions to make sure that you know what your child is working on in therapy and what kind of progress they're making. And what we do know is that the more engaged and involved parents are, the more you put into working with your child and making sure they're getting the service is that they need. The better the outcomes, the better the likelihood that your child will make good progress.


Stephanie
That's great advice. All right, well, thank you so much. It was such a pleasure to talk with you today.


Cathy
Pleasure to talk with you.  


Stephanie
Thank you for listening to the Unbabbled podcast. For more information on today's episode, please see our episode description. For more information on The Parish School, visit parishschool.org. And if you're not already, don't forget to subscribe to the Unbabbled podcast on your APP of choice. And if you like what you're hearing, be sure to leave a rating and review. A special thank you to Stig Daniels, Amy Tanner, Amanda Arnold and Stella Limuel for their hard work behind the scenes. Thanks again for listening.