Podcast: Autism 101 – A Guide to the Spectrum of Disorders
Jenn talks to Laura D. Mead, MSEd. Laura provides insight into recognizing the signs of autism and discusses treatment and support for children and parents.
Laura D. Mead, MSEd, is the educational administrator at Pathways Academy, McLean Hospital’s school for students on the autism spectrum, with and without co-occurring psychiatric diagnoses. She has taught elementary and middle school special education to students with social-emotional and behavioral challenges and her interests lie in building students’ self-esteem within the therapeutic learning environment.
Jenn: Hey everyone, welcome to Mindful Things.
The Mindful Things podcast is brought to you by the Deconstructing Stigma team at McLean Hospital. You can help us change attitudes about mental health by visiting deconstructingstigma.org. Now on to the show.
Hey everybody, thank you so much for joining us today. If you’re joining us for the first time or the 41st time, just thanks for taking some time to spend with us. I would like to introduce myself. I’m Jenn Kearney and I’m a digital communications manager for McLean Hospital. And today’s session is about understanding the spectrum of autism disorders.
So, there’s, you know, when you think about a spectrum, it’s like, ROY G BIV, you’re going to get something on every end of it. And I’m super excited to have Laura today talking all about it. So, it’s going to be about 45 minutes or so that she’s going to be talking about the spectrum of autism, spectrum disorders and then we should have time for Q&A with the audience at the end.
If you don’t know Laura, you are in for a treat. She is fantastic. She is professionally also a teacher and administrator with over 20 years of experience in special education. And she is currently the educational administrator at Pathways Academy, which is McLean’s school for students on the autism spectrum, often with co-occurring psychiatric diagnoses.
So, Laura, I obviously could talk about how wonderful and kind and empathetic you are. But that’s not why people joined today. So, I’m going to hand it over to you. And your screen is already being shared. So how about it? Thank you so much.
Laura: Thank you Jenn and thank you for having me. And just a quick disclaimer of my own. So, I am a school principal, I am a special education teacher. I am not a psychiatrist, I’m not a psychologist, an occupational therapist, a speech therapist.
So, there may be some questions that people have that I might not be able to answer or I might be able to kind of formulate something of an answer. But any questions that people do have, I can get answers to, if I don’t have them by consulting with my colleagues. So, don’t let that stop you.
But I just want to kind of explain to people where my expertise comes in and where my knowledge comes from. As Jenn said, we’re going to talk about the autism spectrum. And I really want to give kind of a broad understanding of the spectrum and hit on a couple key points, a couple key topics.
So, we’re going to talk about what is autism spectrum disorder? What are the brain differences? This is something that I find so, so interesting. And in the last 20 years, there’s been a lot of information coming out. And it often it’s hard to replicate, it can be conflicting with other research because every individual with autism is so different.
But there are some trends in brain differences that researchers are finding. We’re going to talk a little bit about what the presentation of autism looks like. And so, if you have a child and you’re thinking, oh, they might be on the spectrum, we’re going to go through a handful of aspects to an individual’s presentation that might give you a clue. Not a diagnosis, of course, but some kind of cluing in.
Causes and risk factors. Again, that’s an area where there’s research developing, we don’t know a ton, a lot of things conflict. But at the same time, there are some things that we have learned. We’re going to talk about developmental beginnings, early signs of autism, the monitoring, screening, evaluation, treatments and supports.
And I’m not going to go super in depth, that’s its own presentation. There are so many different interventions and not one method won’t work for everyone with autism. So that’s why I think there are so many because you need to really hand select and put together kind of eclectic programming in order to support someone with autism.
And then I just want to talk about the strengths of autism as kind of a way to sum things up. A quick note on terminology. So, this really always bothers me. It bothers me that we have to say that autism is a disability.
It bothers me that it’s a disorder because there is no normal. Normal is a concept that is kind of amalgamated and boiled down from taking an average and even an average when it can be calculated numerically in people, it’s not quite as easy.
So, autism is a spectrum, human behavior and personality is a spectrum. We’re all so, so different. And I really hate to think of autism as a disability because it can bring so many strengths. But at the same time, we do need to categorize things in order to be eligible for special ed services, to have insurance pay for things.
So when I say disorder, when I say disability, it’s important to me that people know that I don’t mean it in a negative way, it’s the terminology we have but I really like to think of learning differences and you know, abilities, strengths in areas of challenge or weakness.
So, what is ASD? Also, a quick other disclaimer. I pulled information from a lot of different sources on this to put into this PowerPoint and I didn’t have a lot of time to reword things myself. So, you’re going to see a lot of quotes around things and down at the bottom, you can see where I got the info.
And so, the CDC defines autism as a developmental disability that can cause significant social, communication and behavior related challenges. Individuals with ASD may communicate, interact, behave, and learn in ways that are different from many people.
And I love that they put learn in there because I think that is one of the key pieces to understanding the spectrum and understanding how to work with people who have a diagnosis on the spectrum. A quick note on developmental disabilities.
So, we’re saying autism is a developmental disability. What is that? What’s a developmental disability? Well, a developmental disability is a condition that occurs during developmental, the developmental period of a child’s growth. And so, there are a lot of different developmental disabilities.
That’s an umbrella category, for example, intellectual disability, cerebral palsy is a developmental disability. All these different kind of milestones that kids will meet as they’re growing from infant to toddler. If conditions are rising where a child isn’t meeting those milestones, chances are it might indicate a developmental disability and autism is one of them.
So, the ASD diagnosis. This is why I think it gets confusing for a lot of people ‘cause things have changed over time, but the diagnosis includes several conditions that used to be separately listed in the DSM-5 or in the DSM-4. The DSM is the Diagnostic and Statistical Manual, and it previously listed Asperger’s syndrome as a separate category, autism, pervasive developmental disorder.
And in I think it maybe was 2013, don’t quote me on that, but the DSM and it’s really the textbook that doctors, psychiatrists, psychologists use to make diagnoses, that the new version of that book basically said, “We are now grouping all ASD diagnoses in together under one umbrella.”
So no longer is there, in reality, a separate diagnosis for autism, pervasive developmental disability, Asperger’s syndrome, it’s just the umbrella term of autism.
How can one diagnosis capture all of the varying strengths and challenges that we see with individuals with autism? And that’s kind of the problem, it can’t, but we just have to recognize that under one diagnosis, spectrum disorder, you can have a person who isn’t verbal, who doesn’t have the ability to communicate using language.
And you can have someone who is going to MIT, and who is a brilliant scientist and engineer, but struggles with interpersonal relationships and that’s all under the diagnosis of autism. Brain differences. So, autism is a neurodevelopmental condition.
Meaning you know, neuro meaning brain, developmental meaning coming with the development of the brain, it’s a neurodevelopmental condition.
And although it’s diagnosed based on the presence of two core behaviors, restricted interests, and repetitive behaviors, as well as difficulties with social interactions and communication, those traits are thought to arise because of alterations and how different areas of the brain are formed, and connect and communicate with one another.
So, no research has uncovered a characteristic brain structure for autism. Meaning that there’s no single pattern of changes that appears in every autistic person. Studies of brain structure often turn up dissimilar results.
Like I was saying there’ll be conflicting evidence about different research studies. But there is a great amount of variety across individuals with autism, which is why it’s so hard to study. But also, so fascinating. Some trends have begun to emerge for subsets of people with autism.
These differences might one day provide insight into how people with autism’s brains work, and treatments. And I think, personally that we’re probably headed toward a diagnostic category of autism with the different subtypes. You see that with other conditions and disorders.
And again, I don’t like to think of autism as a condition or a disorder but if we’re forced to think in those, in that context, I think you will find, it’s very common to have an overarching term with different subtypes that are very specific, instead of this kind of general umbrella with different terms all over the place. I think it’ll be more helpful, but we’re probably a ways off.
Children and adolescents with autism often have an enlarged hippocampus. So now we’re talking about the part of the brain responsible for forming and storing memories. And it’s unclear if this difference persists when a child kind of grows up and becomes an adult.
So that’s another X Factor. When researchers are studying autism, that sometimes you’ll see changes or differences in comparing children who have autism sprains with neuro developmentally typical peers.
They might be different as children, but perhaps, over time, the changes, the differences in the brain might change as the child with autism becomes an adult. So, it’s a little hard to study in that way but also, that’s part of what makes it so fascinating.
A solid body of evidence suggests that white matter, and those are the bundles of the long-insulated neuron fibers that connect brain regions, that that’s also altered in people with autism.
Researchers typically infer the structure of white matter using a technique, I’m sure you’ve all heard of MRI, magnetic resonance imaging. There is a technique called diffusion MRI, which measures the flow of water throughout the brain.
So, I think the ability to use an MRI, a functional MRI, where you can see what parts of the brains light up while someone’s doing a task. MRIs has been enormous in studying child and adolescent brains with autism and adults, but in seeing the changes in the brain over time and seeing the differences.
So I think the white matter piece is key because those long neuron fibers that connect brain regions, if you think about your brain, you have gray matter on the outside, and you know, the different lobes, the different areas that are in charge of different things.
And then the white matter are the connecting wires, basically, that connect the different parts of your brain and help it communicate among itself, helps connect the different parts together.
And there is something called the connectivity theory of autism, which talks about some differences in how people with autism, how their brains connect the different parts and how the different areas of the brain communicate.
So, I think that’s really interesting. Decreased amounts of brain tissue had been found in parts of the cerebellum and that’s the brain structure at the base of the skull. This is according to a meta-analysis of 17 imaging studies.
So that’s 17 different experiments that someone then took a wider look at and analyzed. Scientists long thought the cerebellum was really just about movement and coordinating body movements, but it’s now understood to play a role in social interaction and cognition. So, the decreased amounts of brain tissue in parts of the cerebellum, that’s an interesting newer finding.
On a more global level, the cortex, that brain outer layer seems to have a different pattern of thickness in people with and without autism. And so, it’s thinner in some areas, thicker in other areas. And that is not unique to autism in, for example, dyslexia.
The parts of the brain that are known for working with letters and letter sound associations and phonemic, that area is a little thinner in people with dyslexia. So, it makes a lot of sense to have different patterns of cortical thickness.
And this difference tracks with alterations to a single type of neuron during development. And I was reading about this recently, it’s a single type of excitatory neuron that is part of passing information on and it’s been found to be related in other psychiatric disorders, ADHD, and we see a lot of overlap with anxiety disorders, mood disorders, ADHD in the autism spectrum.
So that’s why, Jenn, you had mentioned Pathways, the school where I work at, we have a lot of students, most of them have disorders on the spectrum, not all. And a lot of the students also have co-occurring psychiatric disorders, like an anxiety or OCD disorder like a bipolar or mood disorder, depression. And it’s just so common to have that overlap.
And so, I think this really spoke to me in terms of this one neuron that they’re studying that might be related in both. The sides of the amygdala. I think, a lot of people if you know, one brain, one piece of brain anatomy, it might be the amygdala because it’s the fear center, it’s the area that gets activated. And the size of the amygdala also seems to differ between people with and without autism.
Other researchers from different labs have turned up different results. Some people with autism have smaller amygdala, than people without, others have larger. Sometimes it’s smaller only if there’s anxiety also in place. So sometimes, researchers have also found that autistic children have enlarged amygdala early in development and that difference levels off over time.
So, the brain is a growing changing thing, which adds to the complexity of autism spectrum disorders. People who lack all are part of one of the white matter tract components of the brain called the corpus callosum.
And that’s the part that is connecting both sides of your brain. People that are missing all or a part of it, have an increased likelihood of being autistic or having the traits of autism.
So that tells us something. And the corpus callosum contains many of those long-range connecting neuro fibers that extend throughout the brain, and the fact that disrupting these connections may lead to autism supports again, that connectivity theory. Preschoolers with autism show significant differences in the structure of multiple white matter tracks.
Again, the white matter is the part of your brain that’s connecting the parts that are in charge of different areas of thinking. And autistic toddlers and adolescents show alterations in white matter throughout the brain.
So now, let’s talk about some presentation pieces, components that we see with people who have autism spectrum disorders. And this might mean, if there’s an Asperger’s presentation or profile, a nonverbal learning disability profile.
If your child used to have maybe a diagnosis of PDD-NOS but now just has the autism spectrum diagnosis, you might see some of these in someone with a diagnosis of social pragmatic communication disorder as well. But that can be kind of differentiated from autism spectrum disorder because it’s really specific to communication.
But so, we see trouble interacting, individuals having trouble interacting, or communicating with others including family, trouble speaking, difficulty expressing feelings or understanding how another person feels. And it doesn’t have to be an inability, it could just be a struggle to not quite truly understand how another person feels.
Disinterested physical contact, being withdrawn, difficulty making friends, avoidance of eye contact, that’s always kind of a big sign for people. It’s not always, you know, a direct correlate with autism, but it often is not using gestures such as pointing or saying a word over and over.
Having trouble understanding subtleties in language like sarcasm, jokes, idioms, repetitive motion, such as rocking or flapping hands or spinning in circles. Rituals, lining up toys instead of playing with them, organizing them by different features, and not that there’s anything wrong with that.
Again, there’s no right way to play with a toy but compared to what is seen, on average. a preference for routines, anxiety when the routine is broken. And the kind of particular all-encompassing area of interest, which can change over time, but really takes over as the key interest in the moment.
Also, unusual sensory behaviors, being preoccupied with lights or spinning things, moving objects, looking at things out of the corner of one’s eye, disliking certain sensory information, bright lights, loud sounds, not liking light touch but craving deep pressure.
Sometimes when we see kids kind of tumbling into one another or constantly hugging or pushing up against people, it might be assigned that they’re craving that deeper sensory input.
Okay, so causes and risk factors. We don’t know about all the causes. But we have learned through research over time that there’s probably multiple causes for multiple subtypes of ASD. And right now, we don’t have the ability to really categorize subtypes as well as we’d like. But there are a variety of different causes that come together, environmental, biologic, and genetic.
So, most scientists agree that genes are one of the risk factors that can make a person more likely to develop ASD. Children of a sibling with autism are at a higher risk of also having autism. Individuals with certain genetic chromosomal conditions like fragile X or tuberous sclerosis can also have a greater chance of getting a diagnosis on the spectrum.
We know that when taken during pregnancy, valproic acid and thalidomide have been linked with a higher risk of autism. There might be some other medications or drugs also connected. There is some evidence that the critical period for developing ASD occurs before, during and immediately after birth.
So sometimes if there’s trauma involved in the birth or lack of oxygen that might have an effect and children born to older parents are at greater risk. A couple quick things about developmental beginnings. ASD begins before the age of three and lasts throughout a person’s life. Symptoms might improve over time; people may learn to compensate.
But if you have autism, chances are you’re going to be kind of working through autism your whole life to try to fit into society that’s made for non-autistic people. And hopefully we can turn society towards them. And I think we’re headed that way, towards a more inclusive direction where it’s okay to stim, it’s okay to spin around and it’s not considered weird.
I think we’re getting there to be more understanding of how we all meet our different needs. But it is kind of a lifetime situation. And even though as we become adults, we might have more strategies to mitigate our challenges or mediate our challenges, we are dealing with it for a lifetime.
Some children with ASD show hints of future problems within the first few months of life and for others might not show up until they’re about two. Some children with ASD seem to develop normally, but then around 18 or 24 months stop learning new skills or lose skills.
So, it can be different. And studies have shown that one third to a half of parents of children with an ASD noticed a problem before their child’s first birthday. So, it’s kind of important to really pay attention during the early years. Nearly 80 to 90% saw problems by 24 months of age.
And again, the problems being not meeting typical milestones is indicators. Early signs: limited or no eye contact, showing little interest in others, caretakers, other kids, limited back and forth expression or sharing of sounds and smiles, limited display of language or delayed development, getting upset by minor changes. Those are not all of the early signs.
It’s not an all-inclusive list, but some early signs. So, in terms of monitoring, screening, and evaluating, developmental monitoring is something that’s happening at your, parents are doing it all the time, you can’t help but monitor how your child is growing. You’re doing it at well-child visits, your doctor and nurse are observing the child, asking questions, asking about milestones.
And there are developmental screenings that take place at certain age well-child visits, at certain stages where a doctor or a nurse will take a closer look and do a quick screening questionnaire, again, trying to determine how the child is doing in terms of milestones. The screening may identify an area of concern and so in that case, a more comprehensive evaluation might be needed.
And so, for an infant or a toddler, it’s going to be a lot of observation. It’s going to be interaction-based evaluation. There’ll be questionnaires for checklists for parents.
As the child is older, school age, it might involve intelligence testing, cognitive testing, achievement testing, speech, and language testing as well and that can occur before school but tends to be more observation-based regardless of the practitioner. The results of the formal evaluation determine whether a child might need special intervention or not. So, no treatment.
In terms of treatments and supports, no treatments been shown to cure ASD, but we do have interventions. So, interventions can reduce symptoms, improve cognitive ability of daily living skills, and maximize abilities.
The differences in how ASD affects one person to the next, is really unique. Each individual has unique strengths and challenges. And so, the treatment plans are usually really multidisciplinary, the treatment teams are multidisciplinary.
And by that, for a young child, there might be a developmental pediatrician, a child adolescent psychiatrist, there might be a psychologist, a speech and language pathologist, an occupational therapist, perhaps the behavior therapist, perhaps a special education preschool.
And for older kids, similar, all of those different team members, and you start getting involved in special education and kind of school-based services, in addition to maybe some services that you’re getting through insurance like speech and OT.
Research shows that early intervention can have a real, wonderful impact on prognosis for kids with an autism diagnosis. Early intervention services help children from birth to three and they can really help kids with learning how to walk, how to talk, interacting.
The goal with early intervention is to teach directly the different skills that children with autism aren’t picking up on their own naturally. And with direct instruction and exposure to so many different skills.
There is so much area for growth, and it’s a great way to kind of get a head start on the challenge of autism. But if you have, say, an adolescent, who you’re thinking might have, Asperger’s, might be on the spectrum, all is not lost, that you didn’t have early intervention, speech therapy, and a special ed preschool, there’s still so much we can do in the educational setting to help individuals with autism.
Behavioral intervention strategies focus on social communication, skill development, reducing some of those repetitive and challenging behaviors. You never want to just insist upon a child to stop doing any behavior, you have to give them a substitute. Teach them alternate ways to express their needs or meet their needs.
For some kids, OT and speech therapy is helpful. For some medication is helpful. There are so many different types of interventions from floor time, to applied behavioral analysis, to naturalistic interventions, social pragmatic interventions, that that interventions are a literal presentation in and of themselves, there’s so many.
And it really, for any one person on the spectrum, you want to kind of pick and choose from different interventions. Some of them are all inclusive programs, others are used for certain specific skills.
So, at Pathways we like to pick from all of the different approaches to find what works best for our kids. Okay, so I talked about kind of the brain differences in the diagnosis and screening, really generally, I didn’t go deep into that.
And we talked about early intervention. I would like to now talk about some of the accommodations that are generally helpful. These are just a sample of accommodations.
And every child being so different, a child that has autism presents with maybe able to use a few words, points to pictures to communicate, his learning skills at a more basic level, they’re going to need a different set of accommodations than a student with an Asperger’s profile in eighth grade, who is in the inclusive education setting, in general ed classes with their peers, but goes to a study skills group twice a day to try to work on the planning and initiation, task completion of homework and activities.
So, it can be very different, but these are a general selection of accommodations that we find helpful. But just a few general.
We want to when working with individuals, kids or adults on the spectrum, you want to use brief language and give direct directions instead of giving, I think often as adults, we give a stream of consciousness direction where we are kind of thinking of it, as we’re saying, and we’re like, okay, go over and grab that plate and while you’re there, grab the fork and knife, now bring them over.
Oh, don’t forget to grab the napkin. We want to be purposeful in the directions that we give to individuals with autism, because they might have trouble keeping things in their working memory. Or they might focus on the first thing you say and not focus on the, five other things you say.
You want to be direct in instruction with individuals on the spectrum. You don’t want to assume that they are going to read between the lines or pick up what you’re laying down.
You don’t want to use idioms like I just did there, pick up what you’re laying down. You don’t want to use language like that, because there’s a chance they might not know what that means, or they might be looking for something to actually pick up that you’ve laid out. It’s a bit of a hallmark in autism spectrum disorders to not understand idiomatic language.
However, so many students at Pathways do and are very good at sarcasm. So, you never know, but they might not get it, so you just want to be direct. And if you do use any kind of figurative language, you want to explain it after and say in other words, understand what I’m saying. Flexibility.
I can’t say enough about how important it is for anyone working with anyone or interacting with anyone on the spectrum, you have to be flexible. And that’s something that I can do as “neurotypical person.”
Although, I beg to differ ‘cause I don’t think there is one neurotypical but if you have to group us, and you consider me neurotypical, well, then I have the ability to be flexible. And so why wouldn’t I use that ability when working with someone who thinks a little more rigidly, who sees things in black and white. I can give an example of the black and white thinking.
We once had a student and he was saying that his dentist was his friend. And we were trying to teach him at the time the difference between family, friends, acquaintances, there’s so many subtle grays in the spectrum of friendship.
And we made a concentric circle diagram with him at the middle and he put his dentist right in with his family, and a couple close family friends, and he put the mailman in there and basically anyone he knew. He put in this close friend in concentric circle and he said, but they’re not my foes.
And outside the concentric circle of friends and family, he put a couple students that he didn’t happen to like, he put the kid down the street that was a bully. So, in his mind, it’s either friend or foe.
And it took us a couple years of working with him on the on and off on the concept of the subtle differences in friendship and acquaintances, and how you might still be good friends with someone even if you don’t see them every day. You might not be friends with your dentist, even though you have a cordial and friendly relationship when you see them twice a year for cleanings.
So, if we can be flexible, we should when dealing with people that are thinking more rigidly, thinking in a more black and white fashion, it’s up to us to be flexible. And if we’re in an educational setting or a family setting, we can then help the individual with autism understand that there’s different gradations within a category.
And we’re willing to if they insist that we’re friends, even though I’m just the mailman dropping things off, I don’t need to say well, you know, we’re not actually friends, we’re acquaintances, that’s okay. Provide assistance for processing events and for pragmatic language, visual and verbal cues. We want to use social stories. They don’t work with everyone with autism but for so many kids, they’re really helpful.
And if you’re not familiar with social stories, I would google social story or social narrative, and you’ll get a lot of information on that. It’s a way of putting down on paper and practicing with someone what you want their mind to be thinking.
Kind of narrating what we would like their thought process to be, for example, you know, sometimes I get angry. When I get angry, sometimes I hit things but another way I can express my frustration is to say I’m angry. That might be social story, a little snippet of one.
We want to be flexible around expectations for time, and activity and a sensory diet. If you’re not familiar with that concept, I would google that because we all meet our sensory needs throughout the day, and it’s something as simple as playing with our hair or ear or chewing gum, drinking coffee. We’re often drinking caffeine to meet our sensory needs or eating crunchy foods.
And people on the spectrum meet their sensory needs by stimming or flapping or looking at the corner of their eye or something. We all have sensory needs. And so, kind of allowing kids to get those needs met through fidgets, through a weighted lap blanket. Noise canceling headphones allows them to block out sound or the ability to eat lunch in a quieter space.
And we really want to be non-judgmental in the cueing and redirection and I know that is probably the hardest thing. The easiest thing for me as an educator, the hardest thing for me in my personal life, because we get frustrated with our siblings, our parents, the people that we love the most, we get the most frustrated with, but we really want to try to be non-judgmental when redirecting someone with autism ‘cause they’re not doing whatever they’re doing on purpose.
And chances are they’re meeting a sensory need that’s driving us crazy ‘cause it’s loud, and they’re humming, you know, loud to themselves or something. But it’s important to not if it is a matter of frustration, and something you’ve asked someone not to do, it is okay to say, can you tell that I seem a little frustrated right now and narrate that.
If you narrate it, I think it’s a good learning tool. Otherwise, it’s really better to try to stay non-judgmental, and I know it’s really hard. Scheduling accommodations, again, the kind of predictable visual change things in real time. A quick note about the state regulations.
Massachusetts IEP is when we meet for an IEP team, if a student has a diagnosis of autism spectrum disorder, the state requires us to make sure that we hit on seven different key points as we’re developing the IEP. And so sometimes this will come in the form of just as you’re developing the IEP and talking about the different goals and accommodations and services.
Other times it’s an actual set of check boxes that will occur or appear on the actual IEP itself, but we’re looking at the verbal and nonverbal communication needs of the student.
The need to develop social interaction skills proficiencies needs from sensory experiences and unusual responses to those needs from resistance to change or change in the daily routine and schedule, needs resulting from engagement in those repetitive activities and stereotyped movements.
And again, chances are those are a way of processing emotion or processing information, meeting sensory needs. So, we want to take that into account when we’re developing an IEP. And again, IEP, I think, I don’t know if I mentioned this before it stands for individualized education program.
And it really is supposed to be kind of the backbone of a student who has special needs and identified special needs. The backbone of their educational experience, including goals and accommodations to help them reach those goals.
The other two pieces, noticing or making sure that we pay attention to the need for any positive behavioral intervention, strategies and supports and address any behavioral difficulties and any other needs resulting from the student’s disability that can impact progress. So that is from the DESE website.
Okay, so the last thing I really wanted to bring up is that autism style wiring is, we all have differently structured brains, and we all have different strengths. People with autism, even among themselves, have differently structured brains, different strengths, different challenges, no matter where you are on the spectrum.
And so, some common strengths; we see learning to read at a very early age, memorizing and learning quickly, thinking and learning in a visual way, logical thinking ability, being precise and detail oriented, exceptional honesty and reliability, being precise and detail oriented.
I once had a student who, do you remember the Where’s Waldo books? It would be like this giant picture book, size book of all this different scene and somewhere in there was Waldo with his striped sweater and his hat and the student could literally open the book and find exactly where Waldo was.
And I personally have really poor visual scanning ability and it would take me maybe 40 minutes to find it, it’s just fascinating. Let me go to this last piece. Just continuing with the strengths; excellent sense of direction, someone with autism might be very punctual or you might struggle to get them out of the house within an hour of an appointment time and it might be the opposite of punctual.
So, these are not common strengths for everyone. But some strengths that we sometimes see, an adherence to rules, the ability to concentrate for long periods on something of high interest, which drives everyone crazy when a student then can’t focus on homework like they could on Minecraft. As adults, we’re like, just try harder, just focus, doesn’t work that way.
Drive for perfection, and order and that’s a strength that can also sometimes work against us. Even people without autism that can work against us. A capability for problem solving, and a fresh kind of sense of wonder at everything around them.
That’s one of my favorite things about working with kids in general. And I would love to say a special sense of humor for kids and individuals on the spectrum. There’s really nothing better than just combining the autistic style of thinking that is logical and detail oriented and combining that with humor, it’s just so cool.
Also, we see people, often with autism, excelling in science, engineering, computer science and math, but again, not everyone, and these aren’t the opposite of social skills. So, some people might think, well, if you’re good at social skills, maybe you’re not as good at math. That might be the case, it’s not necessarily the case. But you can also struggle with social skills and math so something I want to mention. Okay, bring up the questions.
Jenn: Alright, so first and foremost, we had someone write in asking, what do you think of using conditions, disabilities, or disorders as adjectives? Meaning calling someone autistic, bipolar, or schizophrenic instead of a person with autism, bipolarity, or schizophrenia?
Laura: That is a wonderful question. I’m very much a people first type of person. So, I would almost always prefer to say a person with autism, a child with autism. Interestingly enough, in the information from the CDC, they use terms, and I quoted like the autistic brain or autistic children, infants and toddlers.
And so that made its way into a little bit of my speaking today because I was reading from it and didn’t have a chance to paraphrase. But typically, I always go with person first, because it just sounds so crass to say, oh, that bipolar girl, that autistic boy. It sounds like a form of bullying almost in and of itself.
Jenn: And there’s so much more to a person than just one facet of their brain structure, right?
Jenn: So, we had a great question. Someone asked that they were curious if the characteristics that you mentioned are so geared toward the male presentation of autism, but girls are continuing to be undiagnosed? Do you know if there’s any work being done in area to expand to encompass girls?
And I know that it’s a lot of times when it comes to children who identify as female, a lot of them recognize the social cues and try to suppress them in order to fit in a little bit better, and in turn, sometimes have a quieter presentation of autism spectrum disorder, right?
Laura: Yeah, yeah. I think the diagnostic bias, that the diagnostic criteria are geared more toward how boys present. It’s not that unsimilar to when we talk about males and females in the different way that heart attacks present, and that it’s really geared towards in kind of common media culture, the typical aspects of a heart attack are ones that men tend to experience and it’s because men were originally the ones in the studies. And, you know, it’s very similar.
And also, I think there’s a real difference in the brains of individuals who are female. It’s often autism affects them differently. So, I think it’s probably, my opinion, and it’s not a very well-educated opinion but my own personal opinion is that it probably would skew towards more males than females having a diagnosis of autism.
But I don’t think it’s as great as a separation as we see, a one to four type of ratio. I think that probably we’re just not seeing girls.
Although there is a certain amount of research that shows that there’s a certain protective factor in the female brain that you need a few more kind of genetic hits, a few more things to have mutations or go differently than expected for a female brain to then present as autism.
And a researcher once told me that the female brain is a little bit better at rewiring, rerouting, and using nontraditional areas for other tasks and the male brain isn’t as good at that, or at least at infancy. I’m not sure if that carries forward. And there’s other things that the male brain might be a little bit better than, than the female brain. But I think it all plays into it, yeah.
Jenn: Do we understand why some children show early signs of behaviors that are associated with ASD and others seem to end up regressing in their development? And a follow up question would be, do you know of any research studies that look at earlier identification of children who are more likely to regress?
Laura: It’s a great question. I know, part of the diagnostic umbrella includes something called childhood disintegrative disorder. And that diagnosis kind of approaches some of those aspects where skills are lost, or skills that are gained are then lost.
And I think in the past, when you were trying to differentiate between autism and Asperger’s, it was well, were there signs before age three? Were there signs after age three?
I don’t really know the answer to those questions. But I do believe that there is research going on now, more than ever before in terms of addressing those kind of questions. So, I can do some a little research and ask around, see if I can pick anything up.
Jenn: If an adult suspects that they have ASD, what is the best way to determine a diagnosis as an adult? And is there any neuro psychiatric testing that’s geared more towards adults to get that diagnosis?
Laura: Yes, so today we’ve been talking about infants and children, but it’s definitely not too late if you’re an adult, and you’re thinking, I think I might be on the spectrum.
I would say a psychologist is probably the person you want to go to as a point person to then help you with figuring out maybe, giving you some evaluations, there are adult scales and checklists, questionnaire, screeners, if you will, and more extensive psychological testing that you can get into but, I would see a psychologist.
Or even your pediatrician, not your pediatrician, your family doctor, a psychiatrist if you happen to have one already, or if you’re not averse to seeing one, but a psychologist is probably a good place to start.
Jenn: We did have a couple more questions about adults on the autism spectrum. Someone asked, are there general accommodations and supports that are recommended for an adult in a working environment? Or are they similar to those that are being used in the school environment?
And a follow up question to that would be, how do the accommodations for those of us with ASD be adapted as an individual ages and their environment changes? I know I just threw a lot at you at once. So, I can always ask it again. Like don’t hesitate to have me ask it again.
Laura: Great kind of constellation of questions. So, I think accommodations for ASD in the workplace. I know there’s always kind of back and forth, do you disclose that you have an ASD diagnosis and explain that you need these accommodations?
Do you just ask for the accommodations and not disclose? We see our students going through this when they might take a community college course. And they would prefer not to have to use the disabilities office and not to have to tell their professor.
It almost always seems like it’s better to be open and honest about it, because and this is the part that I think makes the most sense, some of the actions or the things that people with ASD might do, they can be considered by someone who doesn’t know better to be rude.
And I think that’s why it’s better to disclose, because then it won’t be held against you that you abruptly ended a conversation and walked away, and didn’t do this kind of obligatory hanging around, like, you know, these kind of weird subtle things that seems so cultural and not that important. And to someone on the spectrum, may be a waste of time.
Also, to introverts, may be a waste of time. But if you kind of do disclose, then you’re in a better place to say here are the handful of accommodations that I need to maximize my capabilities as a worker.
And it will pay off if you kind of have that, believe in yourself kind of attitude and say, it’s not just about what you are giving me as a workplace because it’s the right thing to do but it’ll pay off, it’ll pay off. Did I miss any parts? Are there any aspects of that that I missed?
Jenn: No, I don’t think so. I go, whether you were just describing it, that made me think of a friend of mine in college, who was very open about his diagnosis with Asperger’s and said, you know, as a result, you might think I’m a jerk, but it’s because I’m just a little bit different than you.
And that manifested in ways like you would be on the phone with him and he would just go okay, and hang up the phone, and you could be mid-sentence, but to him the conversation was over.
And, you know, as an 18, 19 year old, that was something that it really opened up my eyes to how everybody’s brain is wired differently and that what might look like “a textbook autism case” isn’t necessarily the same for everybody.
So, I think that’s really important information to bring up, you know, as you continue to age. We did have an individual ask, is high functioning autism, harder to determine or diagnose than somebody who presents with more typical autism traits and are they more likely to fly under the radar?
Laura: I would say definitely more likely to fly under the radar. However, if you are kind of categorized as high functioning autism, sometimes also called Asperger’s syndrome, you may have the ability to fly under the radar in some ways, but I think there would still be some cues like an intensive interest, or I guess sometimes the stimming seems to be a good diagnostic kind of clue.
Although you can certainly have a sensory processing disorder and move your body in different ways. But people with Asperger’s can still kind of get into stimming, and sometimes that can cue in a diagnostician.
I think it could be harder, but I think for the most part, especially people with Asperger’s might still have delays in meeting milestones, individuals with Asperger’s might still struggle socially once they get into the intermediate grades, fourth, fifth, sixth.
Like it didn’t seem as strange in first and second, because all kids are kind of awkward and doing their own thing and trying to like, you know, grab toys from each other. But those subtle social, kind of learning aspects that come even in those early grades, I think it’s usually pretty possible to tell. Hard to say, though, because there’s definitely, there’s a lot of aspies as some people.
I don’t know if every individual with Asperger’s would love to be called an aspie but the people who kind of own the diagnosis, a lot of funky, cool young people with YouTube channels, and they, you know, are self-proclaimed aspies.
I do think there are a lot of people that can fly under the radar. And a lot of them happen to have YouTube channels, and they get comments like, ‘cause they’ll talk about, well, what is stimming? Why do you do this? Why do you do that? You don’t look like you have autism. And they’ll say well, but that’s the thing. There’s no one right look of someone that has autism, so.
Jenn: So, I did want to ask you a question, someone wrote in saying our child is having a really hard time, not taking things literally, and it’s causing them a lot of confusion. As a parent, they’re having a hard time finding out how to explain why things are labeled certain ways, or why people use certain phrases. Do you have any advice for them?
Laura: My first thought is to start an idiom book and just actually directly teach the language of people in, you know, day to day life use phrases called idioms and they’re silly, and we don’t know why we use them but we do. And the child can start collecting them and make it a learning game. And if you can pair a funny visual, with the actual saying.
So, coming up with one on the spot, seemingly impossible. On any given day, you can think of, well, I’ll tell you a funny one. My boyfriend recently taught my eight-year-old nephew, what cut the cheese means and he thought that was hysterical. But I don’t think he would have known, I mean, that’s so from the ‘80s, by the way, but I don’t think he would have known what that was.
But I could just picture him enjoying drawing a funny version of it. And then the phrase, you know, cut the cheese, and then underneath what it really means and drawing a picture of, as grotesque as it might be, but just kind of involving them in the learning process. That’s tough, though. I think speech therapists probably have a lot of great ideas on that as well.
Jenn: One that comes to mind is that more recently, people have been using the phrase “cancel culture” and saying that people are canceled and your thought goes, how can you cancel a person if it’s not something that’s happening, you know?
Laura: Right, yeah.
Jenn: So, we do have time for one more question. We had an individual right and saying they are curious, have some of the intervention ideas that you brought up, how they could be adapted to behavioral therapy with adults to treat comorbid conditions? Specifically, do we know anything about effectively treating suicidality in adults with autism?
Laura: I’m wondering if we’re talking about an Asperger’s profile, suicidality in autism, or I’m guessing that is it. I imagine there has to be so much potential in terms of the different interventions. It’s probably the key piece finding, what works for that individual.
So for example, for some people, applied behavioral analysis has made a world of difference in their lives, because they’re able to recognize and be reinforced and rewarded when they do a certain action and can kind of get in the habit and build that pathway to do that action and feel the reward that they’re getting from it.
Whereas some people, the act of having to do an action in order to get rewarded and then feeling bad about themselves ‘cause they didn’t do the action. If there’s a certain interplay of anxiety, sometimes it’s not helpful. So, it’s all about picking the right intervention. I don’t have any information specifically on that in reducing suicidality.
But I would think there has to be, especially in kind of sensory interventions. And calming and grounding, it overlaps a little with dialectical behavior therapy to some extent, and mindfulness.
But I think there’s a lot there for helping people and I think occupational therapists might be a hidden gem in terms of helping with, because sensory needs are a way, meeting the needs are a way to calm ourselves, and kind of work through motion, so.
Jenn: Awesome. I know we are bumping up against an hour. So, I did want to say, Laura, just thank you so much for all of your insight and all of the resources that you’ve provided. You’re just a treasure trove of information. And I think this will be something that’s helpful not just to people attending, but to people who will be listening as well.
So, thank you tremendously, and everybody who joined, thank you. I know we didn’t get to all the questions today but hopefully we can do another session regarding ASD and hopefully we can get to those questions in the future. But until the next time, thank you again for joining. Be nice to one another, be nice to yourselves and wash your hands. Have a great day, thank you so much.
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