ASM153 Autism Spectrum Disorder

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let's talk about autism on a special episode of ask sciencemic [Music] let's start with the obvious shall we it's been a little while since i've had a mass science mic and even then they've been a little irregular what's been going on well our first question on this week's show will address part of that and the other thing is i've been doing a lot and a lot and a lot of events traveling and uh i just haven't been able to get the show done uh in conjunction with what you've about to hear in the next question it's been a lot of life changes recently but it looks like things are settling in a little bit and for the next few months i should be able to to ease back into that proper weekly ask science mic routine thank you for your concerned emails and in a couple cases letters uh i'm okay it just i get really busy being science mike and uh and you know unlike the liturgist podcast uh this is kind of a solo operation so if i don't have time the show just doesn't get done uh but i'm back and speaking of events um i'm gonna be in vancouver canada this week uh so if you're in vancouver i'm doing an event called radical inclusivity and you can learn more about that at ask sciencemike.com as well as checking out other events that i have going on in the future like the skylight festival in toronto uh or the liturgist gathering in london by the way austin tons of fun we had together for the liturgist gathering at austin if you weren't there i'm so sorry you really missed an incredibly amazing experience and i am sorry for your loss because oh my gosh uh i don't know i think it was one of the most fun um gatherings that we've ever had especially the after party man that was a good one no offense to the other liturgists gatherings which were also amazing uh there's just something something about this one it might have been that this was our first gathering uh with william and hillary as season four hosts on the program and that that led to a good time anyway so don't really have any other announcements other than thank you for your patience in this little busy season and i hope you'll understand more about what's been going on in my life as we get to the next question [Music] our next question came from email and it reads dear mike i recently discovered that i may in fact be autistic i haven't been formally diagnosed yet but many of the traits fit and it helps me understand myself in a new and more accepting way i've done a lot of research into the lives of autistic people and what that looks like practically and what i haven't researched yet was if there are any studies about what is going on neurologically that makes us different and why those differences lie on a spectrum i know that is generally accepted that autism is a developmental difference that is present at birth and is dynamic in the way that it can affect day to day life some days or periods have different challenges than others i'm also aware that no specific gene or cause has been discovered and that there is mixed feelings on if one should even be looked for from the from one person who's insatiably curious about brains to another i'm wondering if you can find any studies or research into any physical differences between an autistic brain and nervous system and a neurotypical one bonus question is there any evidence that autistic people are more prone to spiritual experiences can't thank you enough for the work that you do alison okay uh really relevant to this question i've recently had to confront like my own preconceptions about autism because i discovered that a friend of mine and a public figure uh is on the autism spectrum and i would have never guessed that this person could possibly be autistic why well this person is a public figure makes his living you know standing on stage and talking to people he's got an easy social manner and he just didn't seem to fit my mental conception of what a person on the autism spectrum would look like behaviorally this was especially shocking because the person is me i've recently discovered that uh i i have autism spectrum disorder and even saying that that there is a i'm learning there's a debate over the right terms to use some people prefer to say i have autism and some prefer to say i am autistic and there are differences in the autism community especially between adults with autism and parents of autistic children about which language is more correct or appropriate and i certainly have not made that decision in my own life so if i alternate pretty willy-nilly between uh i am autistic and i have autism during the course of this answer uh i don't want anyone in the autism community to think that i'm taking that debate lightly but rather that i'm genuinely wrestling through what autism spectrum disorder means in my life and honestly i was shocked when a friend asked me if i'd ever considered that i was on the autism spectrum i mean i was shocked because i look people directly in the eye when i speak to them and one of the diagnostic criteria about young children and autism is if they look people in the eye and so i was like well that can't be me and then i also wondered well i'm socially aware you know how could i have autism when i have such an easy manner with people and that i can understand what they're feeling moment by moment and one of the things we understand about people with autism spectrum disorder is a is a lack of social understanding especially in regards to what other people are feeling now many other things associated with autism definitely sound like me uh my wife has said in a non-joking manner for years perhaps even a full decade that she thinks i'm on the autism disorder but i would always say well jenny you're not a mental health professional what do you know but more and more people would ask me including listeners by the way listeners of this program and the liturgist podcast have contacted me in person and via mail and email to thank me for inspiring them and how i deal with my autism and and telling them that it gives them hope that they can deal with theirs and i would always write back gosh i'm sorry i don't have autism i don't know what you're talking about but somehow many of my listeners on the spectrum recognize something that i did not but back to looking people in the eye and being socially aware um when i look people in the eye i think something over and over do you know what that is look them in the eye look them in the eye look them in the eye look them in the eye it's a constant loop that doesn't stop because i'm incredibly uncomfortable with anything more than a few moments of eye contact it raises feelings in my body that i don't understand and it makes me uncomfortable but i grew up in the south and every adult and authority figure in my life from early childhood would say to me look me in the eye when i'm talking to you and so i learned that that was important and necessary and so i look people in the eye and i'm socially aware if you've been to an event you know that i know what people are thinking and i respond to that and as i sat in an office with a clinical psychiatrist which was full of toys and decorations because most people who specialize in autism deal mostly with children adult autism especially adult autism diagnosis is pretty rare she asked me about how i relate to people and i told her well it's very easy i've memorized the vocal tone inflections facial expressions and body postures associated with different emotional states and i assess them in real time and then move my body and my face into what i've memorized as a sympathetic and empathetic posture to make them feel emotionally safe and make them feel like i'm emotionally responsive and paying attention and uh if that you know fails or doesn't seem to do the trick as i read their body language with primarily my eyes and my intellect then i will recall memories that help me feel what they're feeling and she said and how do you how do you know what your feelings are and i said well that's easy i've asked people my whole life where their feelings are in their body because it doesn't come naturally to me the difference between being nervous or excited or angry or sad uh my own con my own feelings are pretty confusing to me but i've always just thought i was weird so here i sit with a couple of professional opinions that uh my childhood development and present circumstances uh indicate that i have autism spectrum disorder at least according to the most recent revision in the dsm-5 which is the the collective work psychologists use for diagnosing conditions and in the dsm-5 there's been some changes i'd just like to catch you all up on in case you're not as familiar with autism as i am after reading a few thousand articles this week the autism spectrum includes high functioning autistic people which high functioning is not a clinical label that is a a colloquial or conversational label that basically means autistic people that can live independently that can you know maintain some kind of employment and function to some degree in relationships without assistance it includes people with asperger's syndrome which in the dsm-4 was a separate condition but which experts believe is too fuzzy to differentiate from autism proper and so in the dsm-5 those conditions have been merged and it would include people with your kind of classical autism in the popular imagination people who can't function in society without assistance and that would include people that are non-verbal people that cannot speak uh because of autism and uh so it's a big tent now this spectrum um now if you're curious like in the dsm-5 what does it mean to have autism well there are three criteria one is difficulty with communication and interaction with other people two restricted interests and repetitive behaviors three symptoms that hurt the person's ability to function properly in school work and other areas of life and i really was challenged by all three of those in conjunction with mental health professionals i didn't believe that those were all present in my life restricted interests i'm called science mike for a reason when i think about a topic i can't stop until i know everything about it i get this state of hyper focus and repetitive behaviors um gosh i have a lot i do the same thing every day from the time i get up to the time i go to bed in what i call loops and mental health professionals call routines and if i don't get to do those loops uh at best i get confused and at worst i get extremely upset in a way that can even frighten my wife which goes into that person's ability to function properly in school work and other areas of life my exceptional gifts at communication and memorization have always afforded me accommodations that weren't always available to other employees when i worked in the corporate world people would be assigned to my care when traveling um and now uh you know jenny makes sure if i'm going out socially somebody's around to watch me if i'm traveling doing a liturgist event or getting picked up to speak in a science mic capacity um i i can't necessarily get in a car and get where i need to go even with a gps um so i actually do have genuine impairment but because my gifts the things about autism uh the way it manifests in my ability to learn and communicate i provide enough economic value that people are willing to make accommodation they won't necessarily make for other people including people on the autism spectrum which is something i felt very guilty about i felt guilty about emailing listeners and saying i don't have autism when it appears that i do and i have felt very guilty about the way that autism has been a real boon in my life difficulty with communication and interaction i fake it really well and i like being around people but i never know uh when i'm allowed to talk uh sometime last year i believe it was last year some bloggers talked about the way i interrupt women on the liturgist podcast i went through and listened to a bunch of episodes on the literature's podcast and i do interrupt women but i also interrupt men because i never know when it's my turn to talk uh so i either wait too long and say nothing or jump in too soon and interrupt people conversation's very difficult for me to navigate i've just got this memorized criteria and this facade that i put forward that makes me appear to be at ease socially uh but you know people don't know that uh in order to do that that i'm i'm rubbing my toes so much in my shoes that shoes don't last very long for me that i i wear the toes out of socks very very quickly because to keep from moving and fidgeting i have to move my toes constantly people don't know that when sometimes my routines are interrupted or i'm socially frustrated there's been times when i've sat in my car and screamed uncontrollably and pounded my face and this is something i carried a lot of shame about so i'm an open and vulnerable person in the media that i produce but i i've had many of these behaviors from my wife for years um and she was very encouraged to hear that i could be on the spectrum because she said she needed a reason that i slapped my face if she interrupts me when i am quote studying unquote uh so the people who know you best sometimes know more about you so my point is you might hear those three criteria difficulty with communication and interaction with other people restricted interests and repetitive behaviors symptoms that hurt the person's ability to function properly in school work and other areas of life and think gosh science mike that's not you or gosh science mike that's not some other person you know and be aware that many people with autism are good at masking and hiding their autism from other people those of us who are fortunate enough i suppose to to be on the quote high functioning unquote side of the spectrum which by the way it's not a simplified spectrum the different criteria and symptoms associated with autism all exist on a spectrum so you know i have i have great verbal acuity but terrible terrible body awareness and and fine motor control i can't move my shoulders independently from one another uh i can't move my hips basically to me from my neck to my hips is like one muscle that i can't really uh pull out individual control of consciously which is weird but i guess that's what i mean this this this diagnosis for me was very freeing after my shock because it took a million things in my life that i'm deeply ashamed of the way that i make noises in my throat whenever i'm alone the way that i spin in my office chair uh the way that you know again if i if my little routines get interrupted that i just simply cannot function the way that i line things up on my desk all day long all of these strange little eccentricities that i'm embarrassed about well they all have a name and the name is autism so anyway if we think about autism a couple things you want to be aware of and this is very relevant to you if you think you might have autism one it is present in early childhood um there's signs of autism that are present in your life asperger's what was called asperger's can present a little differently um but that there's a reason diagnosis is easiest among children and it is related to brain features although we don't know precisely what those are recent research has shown that dendrites in the brains of people on the autism spectrum aren't pruned in the same way that other peoples are so dendrites are these little you can imagine like cilia or hair uh in the spaces between neurons and uh they create strength and neural connections and normal people are born with lots and lots of dendrites and they grow a lot in early childhood and they get pruned and pruned and pruned to create these functional networks in the brain and in autistic people those those networks don't get pruned the same way there's a lot of dendrites especially in the neocortex and especially in the prefrontal cortex and then there's competing theories about other mechanisms of the brain there's one called social motivation hypothesis there's another one called overly intense world hypothesis that that have different ideas about what features in the brain are doing what but the fact is we don't have enough research to have a definitive understanding of how the brains of autistic people are different and and in fact what genetic factors contribute and indeed whether autism is a single disorder or in fact a set of related neurological conditions that as research improves might be broken out into separate types of autism or subcategories as we see with adhd so on your brain question i'm equally fascinated and believe me i've studied a lot what i don't feel qualified to do is share specific information given how tenuous the confidence is in the actual medical community today so if you're curious keep googling just understand that you won't find a definitive answer on what makes a brain a brain with autism now you mentioned that you have not been formally diagnosed you know and i i think for adults who suspect they may be on that autism spectrum this is a necessary conversation and the first thing you would want to ask is why do you want a diagnosis as an adult diagnosis is helpful for children today because there's less stigma associated with autism and additional support resources are available to children with autism in educational communities and and so today a diagnosis of a child can be very helpful when i was growing up in the 80s a diagnosis of autism probably wouldn't have been helpful i would have been removed from normal classes and that could have had lasting implications into adulthood for me so for adults a formal diagnosis of autism would primarily be about qualifying for disability assistance and programs so if you're able to function in your life and you're able to make an income you may not want a formal diagnosis i've heard some reports that a formal diagnosis can be used against you in some court situations and that is colloquial knowledge i've gotten from the autism community and nothing that i have a legal opinion on especially as a non-lawyer and to be formally diagnosed with autism in dsm 5 an interdisciplinary panel is required this is a big project that takes a long time and costs thousands of dollars of course most practitioners even in these panels specialize in diagnosing children so you would have to do additional searching to find you know professionals and organizations who are willing and able to do adult diagnosis because adult diagnosis is tough because so much of autism diagnosis is about early childhood so for example parental interviews are involved in a formal autism diagnosis which is why self-diagnosis is supported in the autism community now i don't mean casual self-diagnosis i think that's a big problem in our culture people say things like oh i'm so ocd when they're not actually suffering excuse me suffering from is a very ableist way to phrase that when people aren't actually experiencing real obsessive-compulsive disorder which as a disorder has serious life-interfering complications uh so that that can minimize what people who have ocd actually experience if you just casually call yourself ocd and the same thing would be true for autism you don't want to casually call yourself autistic or a person with autism so you can start with online screeners there are many and some some are are quite good and similar to what professionals would use as an initial screening and that's a good first step but in no cases is taking an online screener anything like a definitive diagnosis you want to look at the diagnostic criteria you want to do a lot of reading you want to look at records from your childhood so for example in my case it took me hours every day three four five six eight hours every day to do my homework after school when i was in kindergarten first and second grade i was literally put in special classes for children who were learning disabled or or suffer from severe developmental disabilities because of my difficulties socializing with other children my difficulties reading and difficulties writing okay so that was something that you know when i was talking to a professional that they assessed they looked at actual actual records from my elementary school to look at that so there's self-diagnosis there's formal diagnosis but there's also something kind of in the middle and in the middle you can talk to a qualified professional informally meaning you go in for an hourly rate you talk to them you share your struggles and they can kind of tell you well you know this could look like autism this may not be autism uh they may be able to move that into a formal diagnosis if that interests you or short of a formal diagnosis they may be able to help you create strategies for mitigating problems in your life so i'm in the process of working with an occupational therapist to overcome some of my difficulties with texting and email because i have a bunch of strategies i've produced over a lifetime to be social to be communicative that worked well all the way into me being an executive in the advertising industry and those coping strategies have collapsed with me being a public figure just the amount of people trying to contact me in a given week is is a lot and far beyond what i'm able to effectively handle as a as an autistic person so occupational therapy uh is just as helpful as like talking therapy or or psychotherapy in creating solutions to life problems and as you create solutions to life problems and occupational therapy you may find some of the emotional issues are easier to cope with so occupational therapy and informal relationships with the mental health professional are something i recommend but it's also expensive if you're getting full-blown autism diagnostic that can be three thousand six thousand ten thousand dollars it's very expensive an informal relationship with a therapist you're going to pay by the hour and insurance probably won't cover it so there is some not some there's considerable economic burden here and i think that's why self-diagnosis is so supported in the autism community simply because of the cost associated with a formal diagnosis especially a formal diagnosis for an adult so i've been reflecting this week a lot about this new part of my identity and i think i prefer to say i am autistic the reason i prefer to say that i am autistic is so many people squirm when you say i am autistic but there's a reason i think i want to start being publicly involved and publicly identifying as someone with autism one is how many emails i already get from people with autism who say that relating to me is helpful for them so as a source of solidarity i think that's important but i also think i can challenge people's assumptions about autism just by being me i heard a statement that i have thought about a lot and really enjoyed once you've met a person with autism you've met one person with autism there's a tremendous diversity in people with autism in the world there's a tremendous diversity in how symptoms are present what our struggles are what our gifts are and too often in the popular imagination autistic people are viewed as either rain man these kind of brilliant savants who are otherwise non-functional people or viewed as kind of absent-minded professors and reducing this community down to those two notions eliminates so many people's experiences and validates them makes social support unavailable to them for example women are much less often diagnosed with autism and now we believe that's because women are so heavily socialized as children they're forced to mask their symptoms frankly i think my participation in religious communities as a small child is a big reason why i mask my autism so well i had to learn to behave in some basically acceptable manner or as a religious southerner the consequences were severe and they were severe anyway you've heard my story you know i didn't have any friends growing up i didn't know how to relate to other children their behavior is confused and mystified me even more than my own feelings but i made it i was lucky had good parents and here i am today an autistic person coming up on my 40th birthday been married 18 years two beautiful children i had a successful career in advertising i'm a published author with another book on the way people buy tickets to see me on stage often north of 80 percent of my events sell out i am in the eyes of our culture successful and i am autistic but i don't want that to become some expectation for autistic people that if they're not like me they're not successful because what i truly understand is that if your brain is anything like mine existing has been a struggle and so if you're listening and you're autistic or you have autism however you prefer to say that i want you to know that i consider you a success because you're still here and you bring to the world something unique something that only you can bring whatever your interests are however you verbalize or do not the world is fortunate to have you in it and so as one autistic person to another i can't wait to figure out how to teach the rest of our culture how to be more inclusive and more accommodating to people of all types of abilities and disabilities and for those of you who are neurotypical for those of you who are not on the autism spectrum i hope that this little conversation together maybe helps you understand more about me that's fine but helps you confront what you might think about autistic people and blind people and people who are unable to walk or people who don't have the use of their arms people are missing body parts that in our time together all these years that you've been reading the book or listening to the podcast you haven't held preconceptions about me and you've viewed me as a person and now you've discovered that i have autism and i hope what that can encourage you to do as believe me it is encouraging me to do is to not reduce other people to a condition but to also not ignore the roles that disability plays in the lives of the people we love and the lives of the people that we meet each day thanks for listening everyone and i'll talk to you next week