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Welcome to the neuro nurture podcast, dedicated to equipping and supporting families, navigating the world of autism and neurodiversity. I am your host, Kirsten Sullivan, who is on a mission to help autism families go from surviving to thriving. Welcome to the show. Hey there. And welcome back to another episode of the NeuroNergy podcast. Today's episode is all about defining autism and redefining autism and why the language that we use when we describe autism, why is that so important? To do that, let's first unpack the term neurodiversity. Now, I know you've probably heard this term a million times before, but it really sets a foundation for how we view autism, how we perceive autism, and it can really aid in a complete mindset shift to how we see this condition. Now, the term neurodiversity was first coined by a woman named Judy Singer in 1998, and she used this term neurodiversity and neurodivergence in her thesis. And she described this term as, you know, just as there is variation in eye color, in hair color, in height, that there is also this natural variation in human behavior and this diversity in human brains. And so, back then it was only used to conceptualize autistic differences, but now we see that it really is this umbrella term for a variety of different conditions that include ADHD, dyspraxia, tics, uh, OCD. We see it also encapsulates a lot of other mental conditions. And so really, rather than trying to fit people into these medical categories, which does not always work, instead of thinking as no disorder or a disorder, that it really comes down to recognizing that they will always be this difference. They will always be this divergent from the norm, but that this difference. Does not need any cutoffs. And so, when people ask me, you know, well, how, how do you define autism? It's really tough to, to come to one single definition because, you know, as you know, every single person on the spectrum is so different. There is no two people that are exactly alike on the spectrum. I like to refer to it as, someone whose brain processes learns and behaves in a way that is different, it's considered different to the norm, or considered different to what is typical. Now you've also probably heard of the term neurotypical, and now this refers to someone who, who process information that is sort of typical to the general population, you know, the, the population at large something that I also want to bring in here is the whole debate about labels, a lot of people are saying, well, with this rise in neurodiversity and this sort of different conceptualization in the way that we define these conditions, well, our labels even necessary, you know, are they restrictive, are they more harmful than helpful? And for me, it comes down to striking that balance. So we see that a lot of autistic adults when, when they speak up, they were so relieved when they received a diagnosis because they felt that they finally had answers. We also see that, a diagnosis can be super beneficial, especially when it comes to clinicians that do need to recognize diagnostic thresholds and boundaries in order for, for autistic individuals to receive the appropriate support, it comes down to, accommodations. in educational settings, it comes down to the medical services. A lot of the times, if you do not have a diagnosis, you are not able to access the appropriate and correct support, but there also needs to be this balance in, in the way that language is used, you know, especially in a lot of medical textbooks I've seen that the language is often very deficit based it's very much based on impairments. The language that we use and the role that language plays really shapes, a young person's identity and how they view themselves. It's really important to, to get this balance. When it comes to defining autism, as I said before, it's very difficult to, place a single definition around autism, but let's look at the DSM 5 and let's compare the DSM 5 to perhaps a more strength based approach. The DSM 5 is the Diagnostic and Statistical Manual, the fifth edition, and it provides a standardized criteria to help diagnose autism. Autism, but you will see that a lot of the ways in which autism is defined nowadays is very different to the way that autism was defined in the past. So we see that the DSM five. They use a lot of deficit based language instead of a strength based approach. And I want to provide a difference between the two but before we get into. The DSM five and perhaps redefining it. We know that autism is a condition that affects social communication and the current estimates are one in 67 of the population. But these statistics are always changing. And in the USA, for instance, there have been recent studies come out that it's now one in 36, that the prevalence has been increasing, but the reasons for that varies, it could be due to, an increased awareness in screening, just more awareness that more people are getting tested. And we also know that autistic people, they generally have. A difference and difficulty with communicating with others, but this manifests and varies widely. We see that, for example, some autistic people, including children have very sophisticated language skills and they can be extremely articulate but their ability to communicate with strangers or to understand social cues that can be slightly lacking in certain areas. On the other side of the spectrum, quite literally, others may have profound language and communication difficulties. we also see that some autistic children, they have intellectual difficulties while others do not. So the way that autism manifests varies very differently from individual to individual. You've also probably heard that autism is sometimes called a neurodevelopmental condition this is a condition that affects the brain development so this means that the neural pathways necessary to understand human behavior and communicate may develop and function very differently. We also know that autism can be highly heritable, however, not one, but many genes can be implicated in the development of autism. And also just to, to mention that, you know, autism is not due to parenting styles, it is not due to vaccines or diet. This is not to say that your certain dietary changes haven't been helpful for some autistic children we often see that they are helpful, but it is not the cause of autism. Now the diagnostic criteria in the DSM five, like I said before, is very deficit based. So they would define these two main domains. The first one being persistent deficits in social communication and social interaction. And the second one being restricted, repetitive behaviors. Just to unpack that a bit more, the first domain, I like to refer to it as purely social communication and interaction differences not deficits in them. In the DSM five, a child has to have persistent deficits in each of these three areas. And these three areas being deficits in social emotional reciprocity, deficits in nonverbal communicative behaviors, and also deficits in developing, maintaining and understanding relationships. To turn it into slightly more strength based approach the first one I like to refer to as differences in reciprocating people's emotions or social behavior. The second one is differences in initiating or responding to social interactions, and the third one being differences in developing and maintaining and understanding relationships. And there's also just an extra one that I would like to add. And that's reduced nonverbal communication. So in order to unpack these four that I have under social communication and interaction differences a bit further in the first one, the differences in reciprocating people's emotions or social behavior. This includes reduced sharing of interest or emotions. So we see with typically developing children that oftentimes, they will point at it. They will look at it. They will look at you. They will look back at the object, they will see if you are interested in the object or there'll be shifting the gaze between you and the object but we see in children with autism that this is reduced or, or not even prevalent at all the same goes for when someone is hurt or they are hurt, they will immediately seek at comfort from the caregiver, or that will show empathy in a very typical way if someone else's hurt, but we see with autistic children that, they'll show empathy in a different way. This doesn't mean that children on the spectrum do not have empathy. They do it's a huge myth that autistic individuals do not show empathy. They do. They just show it in a different way. Now, moving on to the second one, the differences in initiating or responding to social interactions. This comes down to children develop skills in approaching others and initiating play, so we see with typically developing children that they want to make and keep friends it's very important for them, you know, that they place a very high regard on their desire for social interaction and social curiosity, you know? So we see in autistic children that this is often not really the case that they do not hold social curiosity in a very high regard, and oftentimes we see that. The questions that autistic children ask are slightly different to what neurotypical children will ask for instance, a neurotypical child will ask questions like, what's your name? what's your favorite color? How are you? But the reason for these questions are very different And also we see that oftentimes autistic children will ask these questions just because they have seen other children doing so and this is also where masking comes in, that they have learned that this is sort of the right thing to do, but their response or their delivery might not be entirely natural. The third one is differences in developing, maintaining, and understanding relationships. And this is also Sort of closely linked to the area that I unpacked now before this is that when it comes to continuing with the social interaction, it really affects whether we form long lasting relationships. In terms of social skills and knowing how much to share, knowing with whom, who we shared with is very important and important in keeping and making friends. We also see another area here, cooperative play skills, is really important in younger children where, they make playdates an enjoyable experience and they'll want to repeat it, but we see in autistic children that they may have difficulty with either of these skills, in making or keeping friends or they may have difficulty joining into games that they are not interested in or sharing toys and this may be driven by the theory of mind. Because it's really crucial in understanding other people's thoughts and perceptions and emotions and intentions, which oftentimes autistic people find quite difficult to do so. The fourth one is reduced non verbal communication. We often see that in autistic children, that their eye contact is visibly lesser and invisibly more reduced than in typical children, or they might have sort of unusual eye contact what's considered typical, where they will peer out of, the corners of their eye, for instance, and we also see Autistic children often show fewer gestures that they often have fewer facial expressions and when it comes to gestures, we speak a lot with our hands you know, show how big something is. For example, we wave goodbye, we wave hello. When it comes to autistic individuals, oftentimes. That frequency and that duration of gestures is often lesser or non existent. And so when it comes to the second area of difference, the DSM 5 characterizes this as impairments and restricted repetitive patterns of behavior. We see that restricted repetitive patterns of behavior, interests or activities need to be manifested by at least two of the following. And this is stereotyped or repetitive motor movements. So the use of objects or speech. And insistence on sameness, inflexible adherence to routines or ritualized patterns of verbal or non verbal behavior. The third one being highly restricted or fixated interests that are abnormal in intensity or focus. And the fourth one being hyper or hypo. reactivity to sensory input or unusual interest in, in sensory aspects of the environment. Now you can see that the language used is extremely deficit based. So I like to refer to the first one as simply stereotyped or repetitive motor movements. The second one being a preference for sameness. Or inflexible adherence to routines. And the third one being highly focused interests. And the fourth one being under or over responsiveness to sensory input. So let's dive into the first one of the stereotype or repetitive motor movements. I just want to say that yes, or while it is common, that most young children flap their hands, that they engage in dog. Repetitive motor movements on a frequent basis, especially when they are younger. The intensity and duration and focus is very different when it comes to autistic children. When a child does some of these behaviors to the exclusion of other play. For instance, lining up toys or spinning the wheels on cars, you know, then we see that this might be an indication for autism. Other stereotype repetitive motor movements might include rocking back and forth. It might include also peering at things out of the corner of the eye. It might include finger twisting. So we all see that this domain includes echolalia and echolalia is repeating what someone else has just said. once again, it's a very normal part of language development, but if it persists past the age of three, or if a child's main language production is echolalia, then this might be a sign of autism. Now moving on to the third one, a preference for sameness or inflexible adherence to routines. We see that a lot of autistic children, They want to eat the same food every day. You know, the beige diet is very common. And this is because autistic children love sameness. They need predictability. They need that routine and, and that sort of comfort that they get from knowing that what they will get is the same thing provides a lot of reassurance. It provides a lot of safety. It provides a lot of calmness. And we also see that, some autistic children also, they're very particular about, the route that you take home, for instance it has to be the same And another aspect of inflexibility might include difficulties with transitions. And this is transitioning from one activity to the next. Now there are a lot of different factors that, that come to play here, but it might also be due to executive functioning challenges and this can cause really extreme distress. When it comes to tiny changes in their environment, it may also cause extreme distress because their adherence for sameness and routine is really overpowering. The fourth one is highly focused interests. Again, many children, they have a fascination with certain things, but when this becomes unusual is a matter of pure judgment. So the key word is intensity and in focus, if a child is constantly thinking about space, for instance, you know, they, they cannot think about Anything else, all they want to speak about, all they want to do, or dinosaurs, that they just want to wear dinosaur clothing the whole time. They just want to speak about dinosaurs. They don't want to play with anything else apart from dinosaurs. Then we know that this might be a sign of autism. We also see a lot of children, they have an encyclopedia of knowledge when it comes to World War II, for instance. And when this highly focused interest outweighs all other interests and it becomes really intense in, in duration and frequency, then this is considered a highly focused interest. And the fourth one is under or over responsiveness to sensory input. Now, this is so important. A lot of people really disregard the importance of sensory input, especially when it comes to autistic children. A lot of the times autistic children have very heightened responses to sensory stimuli. So this can include sensitivity to certain materials, even labels, in the inside of their clothes might really, really get to them or, certain smells or sounds, or, you know, even fluorescent lights. It might be so overbearing. We also see that there can also be a fascination with lights or, or spinning wheels, you know, that visual input, a lot of kids, they love that visual input. Whereas other kids are completely hypo responsive to, to sensory stimuli. You know, they need to do a lot of heavy work. They need a lot of jumping, a lot of spinning, a lot of running It's important to note that, there's no single feature that would mean that a child or an individual is autistic. reaching a diagnostic conclusion really, it should be carefully conducted and it should be done by a professional who is very experienced in, in autism spectrum conditions. It also has to take into account the impact on an individual's life. So let's quickly dive into myths. And I love debunking myths because there are so many autism myths that really need to be spoken about and need to be squashed. So. The first myth is that autistic people have no imagination. Now this is completely false. While you are true that some autistic people, they have difficulty with imagination. We see that oftentimes in young autistic children, that they weren't engaged in imaginary play for instance but many autistic people are capable of incredible creativity. A lot of autistic people are talented artists. They're thinkers, poets, this all requires imagination. Another one is that autistic people are not interested in socializing or having friends, right? Yes, they are. Like to keep to themselves, they'll rather engage in parallel play for instance, but oftentimes they just lack the skills to make or keep friends. It doesn't mean that they are not interested in socializing or having friends. Another myth is that all autistic people have special skills. You know, we've all seen the movie Rain Man. Sometimes this is true. Yes, we, we do see that some autistic people have incredible talents and some may seem superhuman, but most autistic people, they have strengths and difficulties just like the rest of us there might be more pronounced in autism, but this doesn't mean to say that every single autistic individual has this skill that is superhuman. And the last myth being that autistic people have no empathy. Now I did mention this. Previously in this episode, they may have difficulty with understanding other's perspectives, right? But this doesn't mean that they lack compassion or that they are cold or that they are rude or, or that they do not care for other people's feelings. It might seem that autistic people lack empathy because they, they often find it difficult to disengage what's going on in their own mind. Understanding empathy on a cognitive level, recognizing that someone else's emotion and, and lacking compassionate facial expressions or, fear that, you might be doing the wrong thing, it doesn't represent that they are unkind or the behavior is lacking in empathy. Autistic people will vary very widely in their ability to empathize, just as a lot of neurotypical people, also do not show much empathy I also want to dive into just a few other characteristics that are related to autism and, throughout the different research journal articles that I've been reading and they've sort of been coming up a lot and, and there's sort of a pattern in what researchers are finding in, you know, how we can define autism. So understanding these can really be crucial in thinking about how to help your child. The first one is understanding other people's perspectives. The theory of mind refers to the ability to infer other people's thoughts and feelings and emotions and intentions. And, and sort of to make these predictions on. They behavior based on these inferences. When it comes to autistic people, they often find it very difficult to perceive other people's emotions. This is obviously a very important skill for humans, you know, in order to form relationships in, in order to understand each other's perspectives. We see that somebody's facial expressions and body language, if it's suggesting that they are anxious, for instance, we need to be able to represent this in our own minds and we need to be able to formulate our behavior and our actions and what we say accordingly. Autistic people sometimes find this very difficult. And this is also where, you know, as I mentioned before, where the, the whole empathy side comes into it. And so we see that, you know, a lot of research shows that autistic children, they have difficulty acquiring theory of mind. And this may also be related to differences in joint attention and imitation at a young age, whereby how they acquire theory of mind is different, you know, to the typical child. So a lot of times, they learn through logical deduction. So this person said this, so this must mean that they think that. Rather than the sort of intuitive natural process. A lot of the times if people are able to pass the sort of experimental theory of mind, it doesn't mean that they in real life, that they are able to apply those skills, right? So factors such as anxiety and language processing can also get in the way. So we see that this is a lot more prominent in autistic individuals. Another area that a lot of research has been focusing on is what does it people usually process the detail this is a theory that was developed in the 1990s and it was called a central coherence hypothesis. And it refers to the way that autistic people process information than seeing the bigger picture, autistic people really focus on detail. This may be because processing context is compromised which could explain why some autistic children are really proficient readers, but then they're not so skilled at reading comprehension, for instance, so initially this was seen as a deficit and an impairment where, the assumption that bigger picture processing is always desirable for social success, for instance, But there are many instances where processing detail is way more beneficial than seeing the bigger picture when it comes to proofreading, for instance, you know, or, or surgery, I think I would definitely have someone who has an eye for detail in, in these areas, then have the strength of being able to see a bigger picture or they have a strength in bigger picture processing. Another one is a difficulty in managing uncertain situations. Right. And this really fits into the second area of the social interaction communication where they have this sort of instance for sameness and, the sort of inflexibility to routines so this cognitive style, which has been linked to a number of mental health conditions has only recently been sort of brought to light in autism. What the research is saying is that a lot of autistic children, individuals, they have a greater intolerance for, for change, for uncertainty, we see that anxiety is very pronounced in a lot of autistic individuals and neurodivergent individuals because they have this need for, for sameness and predictability that when there is change, that this really can throw them off. And the last one is a difficulty in recognizing and reporting your own emotions. We see that this is often linked with interception problems. So interception refers to the difficulties in recognizing any internal signals. So, you know, we all have these signals for hunger, when we need to relieve ourselves, when we're tired, when we're in pain, we have these internal signals in our body that sends these signals to our brain to alert us that our need needs to be met. But we see that in children with autism and individuals with autism, that they often are unable to recognize their own emotions and recognize these cues, these hunger cues, these pain cues. And this can cause a lot of distress and confusion. If you can't recognize your emotions and especially at an early stage you can't employ the strategies to manage these emotions. And then this is where we see a lot of shutdown, a lot of meltdowns, really the inability to regulate. Emotions, very prevalent in autistic children and individuals. So learning more about these characteristics can really foster and enhance a deep connection and understanding to your child. And it can really provide some clarity on, you know, the reason behind their actions and thought processes. And so I hope that this podcast has given you a bit more clarity and perspective on autism and can provide you with a slightly different understanding of how we view autism. we have come a long way in our understanding of autism, but we still have a very long way to go. If you live in South Africa, like me, you'll understand that we are still very far behind in a lot of areas. But if there's one thing that I want you to take away from this episode is that every single child on the spectrum is different. Every single child is so unique and the uniqueness needs to be celebrated. It needs to be fostered. Rather than trying to change or cure or fix autism, we need to think about how the world needs to change to accommodate the diverse needs of autistic children and autistic individuals. You have been listening to the NeuroNurture podcast. Remember to subscribe. And if you have enjoyed this episode, please leave a five star review. This will help other autism families find podcasts like this to help them navigate the world of autism and neurodiversity. Until then, take care and celebrate neurodiversity in all its forms.