Autism in the Adult Neurodiversity: Making Space for Complexity
Join Dr. Regan for this episode on the neurodiversity movement, autism affirming services, and the importance of allowing for complexity in our understanding of autism.
Dr. Regan's online presentations with Zur Institute March, 2023:
Is my Client on the Spectrum? Dispelling Myths About Autism Diagnoses
Autism Assessment: The Seven Diagnostic Criteria Brought to Life
Dr. Regan's Resources
Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
Read the transcript here:
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Welcome to the podcast Autism in the Adult.
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I'm Dr Theresa Regan,
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a neuropsychologist,
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the mother of a teen on the spectrum,
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and the founder and director of an autism diagnostic clinic in Central Illinois for adolescents,
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adults and aging adults.
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Sometimes I get emails from people asking if I perform autism assessments for adults.
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And indeed,
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that's my full time job.
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So I go to work every day.
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I see patients and clients in a medical setting for evaluations and recommendations.
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Then I also have other things that I've chosen to do in the topic area of autism because I'm passionate about the people impacted and the positive things that can happen when we understand more about the autistic neurology.
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I do have a few online presentations coming up through Zur Institute which is a continuing education program for professionals.
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I'll include a link in the podcast show notes to these programs so you can look at the descriptions and registration links.
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And the first one is Tuesday March 7th 2023.
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For one hour.
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The presentation covers information about the basic foundational rules of the autism.
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Diagnostic criteria Will be dispelling myths about the foundations and requirements that may prevent people from being referred for assessment appropriately.
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And the second presentation is on Saturday,
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March 25,
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that's for two hours and this presentation will highlight the seven diagnostic criteria what they mean and also what they look like in a clinical case of a young adult female,
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just to illustrate some of the concepts.
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So if you are a clinician or you know,
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of professionals in your area who are wanting to learn more about autism,
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this may be a good resource opportunity.
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The topic of the podcast today is actually not the topic that I had been working on.
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Uh to record,
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I've had multiple interactions about a different topic over the last few weeks.
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And it really struck me as perhaps something that would be timely to talk about or helpful to process.
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And so in this episode,
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I wanted to talk about neurodiversity and autism affirming approaches to serving those on the spectrum.
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I'm gonna talk about three things within the context of this episode.
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One is just what are we talking about?
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What's the definition when we talk about neuro diversity?
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The second is what kinds of conditions or characteristics might we want to include under the umbrella of neuro diversity?
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And the third has to do with a viewpoint that some put forward that says that only individuals who have diagnoses of neuro divergence should be offering services to those on the spectrum.
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When we talk about neuro diversity,
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we're basically talking about the idea that people experience and interact with the world around them in many different ways.
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And this concept of course,
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neuro being neurology and diversity,
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meaning diversity.
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So we all have variations in our neurologic wiring and there's no one quote right way of thinking,
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learning and behaving and that all neurologic differences should be appreciated as part of natural variation.
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And I explain those concepts,
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knowing and wanting to communicate that people will defined neuro diversity differently.
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And so I'm trying to use phrases that are commonly used um in describing what that means,
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one person can say that,
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you know,
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that isn't really what it means to me and that's completely fine.
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It's such a complex topic that getting it right as everyone would define it is difficult.
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But basically,
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it is this understanding that there's variations on our wiring and there's this emphasis that there's not one right way to be connected neurologically um at its best when we're talking about neuro diversity as a concept and autism affirmation as a concept.
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It really helps ward against an approach to intervention that may focus on correcting or fixing behaviors in the neuro diverse individual only because the behaviors are unusual or atypical. When a therapist is neuro diversity affirming or autism affirming,
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this is often used to emphasize that they understand that neuro divergence itself is not a flaw or an illness that needs to be fixed or corrected.
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And we're gonna talk about this a little bit more later.
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But neuro divergence often refers to autism,
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but it is a much larger umbrella right now.
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And so we'll talk about that as well.
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However,
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at the same time,
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we hope that the autism affirming therapist can also acknowledge some parts of autism that really may create a lot of difficulty or pain for the person that's presenting for care.
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So at its best,
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we really hope there's this balance of understanding of the gifts and strengths in the autistic experience in the struggles and difficulties that someone may really inherently experience,
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not because of the attitudes of society or,
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or anything,
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but because this neurologic piece is really giving them difficulty. At it's extreme,
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there may be some in the autism affirming community or the neuro divergence community that really emphasize that the autistic experience is very positive in its essence that the diverse experience should always be emphasized as strength and the variation doesn't involve any inherent struggle.
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I think that when
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we get to that categorical kind of description,
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whether someone is talking about the autistic experience is all bad... or all good,
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you know,
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I think we're missing the complexity of the human experience and specifically here,
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the autistic experience.
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So what I would say about the movement and the concept of neuro diversity is it's really best when we're able to stay centered in the complexity... in the center,
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not those two extreme categories,
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but in the center of this mix of good and difficult where most often the truth lies in that center in that complexity.
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Let me explain what the DSM 5,
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that's the diagnostic manual for many of the conditions that people refer to as neurodivergent...
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I want to talk about the criteria they use for when something is called a diagnosis.
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So this is not specific to autism.
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This could include learning disability,
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autism,
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psychosis,
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depression,
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lots of different things.
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And there are two things that they really focus on as being present in order for a diagnosis to be relevant.
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And so one is that the condition,
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the constellation of characteristics, is statistically atypical ... that it's not the most common constellation that we see in the daily human experience.
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It's not the most common state.
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Now,
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the second thing though is that the atypical constellation of characteristics must cause some form of difficulty for the individual,
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you know,
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does it work against their physical health?
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Does it reduce their safety in some situations?
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Is it associated with internal distress,
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does it prevent the person from reaching goals for daily living,
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like maintaining work?
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Is it associated with pain and relationships?
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So it has to have some functional impact that has worked against the well being of this individual.
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So,
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both things according to the diagnostic manual must be present for a diagnosis.
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There has to be this atypical constellation,
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but there also has to be ... that this atypical constellation has been the root of some functional struggle.
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So if there are individuals who have the autistic neurology and it has never been a source of functional difficulty,
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they actually don't meet the criteria for a diagnosis as defined in the in the manual.
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So when we're talking about having an official diagnosis,
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that would be part of it,
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that in some season,
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in some way,
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there's really been a struggle associated with those neurologic characteristics.
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And this is why,
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for example,
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depression is a diagnosis as well. It's not rare,
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but ... it's not the most typical mood state.
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And when people get stuck in that atypical mood state,
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it causes these functional areas of difficulty.
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It's hard to get up,
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it's hard to go to work,
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it's hard to maintain relationships.
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And so that's where we shift from saying something is diverse to something that
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we're calling a diagnosis... that rather than just being mood-diversity where gosh,
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I've had a bad day,
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but it's really not impacted functionally how I'm doing across time...
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but when I get stuck in this mood state and it's really interfering with wellness in my daily life,
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that's when it's a diagnosis.
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Now,
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autism as a diagnosis does require that difficulty at some point in your life that you've really had the autistic neurology,
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making it hard to function in a way that's comfortable where you're achieving your goals.
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Now,
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autism as a diagnosis occurs in 2% of individuals,
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they would meet the full criteria.
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The neurologic characteristics hang together in those individuals because they hang together anatomically and they have also impacted the individual's well being their goals,
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their functional life.
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Now,
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does this mean that the neurology of autism causes pain or distress in every way?
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Absolutely not.
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Does it mean that the difficulty is constant throughout the whole lifespan?
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No.
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So in my viewpoint,
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all humans have characteristics that work for them in some ways and against them in some ways.
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And this is true in autism as well.
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For example,
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the attention to detail can be a great strength in some work projects.
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Whereas it can really create difficulty when the ultimate goal is speed and generalization rather than detail.
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So much of the benefit for the autistic individual and those who love them is this increased awareness of how their characteristics may work for them or against them in different contexts or across life seasons?
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Now,
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having said that again,
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remember that individuals who meet that full criteria by definition have had a level of neurologic difference that really increases the risk of difficulty and a lot of these functional areas compared with someone with a different neurology,
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we know that every human will have this mix of gifts and weaknesses,
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strengths and struggles,
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abilities and limitations.
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And for one person,
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you know,
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he may excel in athletics but struggle to read at functional levels.
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So he can't read a contract or release or a medical form without struggling and getting taken advantage of,
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that's a neurologic difference in that reading comprehension.
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Another person may be able to produce wonderful needlework that requires really good fine motor skills appreciation of color
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palettes,
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creativity and design.
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However,
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they might struggle to keep blood sugar levels even and their pancreas just isn't helping them with this task as much as we would wish.
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And maybe they take insulin shots because of this.
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I bring these examples up just to say that in our human form,
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we all have gifts and strengths and triumphs and skill sets.
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And we also will have some form of limitation or struggle at some part in our life and my struggle,
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my limitation in my human form may be different than yours.
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But I know that the commonality of the human experience is that you also will have some strength,
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some gift in your human form and some limitation,
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some struggle in that human form.
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And for some their area of gift and struggle may involve aspects of this autistic neurology.
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I think we do best for each other when we appreciate all sides of our humanity,
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that these are my strengths,
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these are my limitations,
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this is my humanity,
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this mix of good and difficult and strong and weak.
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And I'll always have a mix of this and this is what it is to be human and to truly show honor and respect and appreciation to the personhood of each individual.
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We allow all those things in the mix to be viewed and discussed.
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There's no reason to only talk about easy things,
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bright things,
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successful things.
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We can talk about all the messiness of each of our humanity and still affirm that every single person,
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no matter their age,
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culture,
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health abilities,
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spirituality,
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gender,
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any of these things,
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every single person is filled with inherent value and is deserving of honor and respect because that is inherent to their personhood and having a gift does not make them any more valued in having limitations.
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Does not take away any of their value.
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When someone is celebrating and rejoicing,
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we can come alongside and celebrate too.
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And when someone is grieving,
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when someone is struggling with something or coming across their own limitations,
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we also come alongside them in this as well.
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We can acknowledge the struggle,
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we can offer community assistance,
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anything that we can bring to the table in this moment of of humanity and coming together.
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So let's talk about the second topic,
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which is What kinds of diagnoses or characteristics do we want to consider as under that neuro diversity umbrella.
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So the neuro diversity movement began in the 90s as a way of talking about autism and sometimes attention deficit and the real benefit of it was that it,
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it championed the humanity of everyone with neuro diverse characteristics and made sure that they weren't being looked at as less than or somehow not as valued in society.
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Examples of conditions that are currently considered under the neuro diversity umbrella often include in addition to autism and attention deficit,
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things like obsessive compulsive disorder,
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bipolar disorder,
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dyslexia,
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and dyspraxia.
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But now,
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even though in the beginning,
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we often would talk about autism or attention deficit as being a large part of neuro diversity.
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Now,
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there's a much bigger umbrella that people um talk about as involving these kinds of conditions and it's kind of growing all the time and there's not an inherent difficulty with that,
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but there are some challenges with having the umbrella be very narrow or having it be really um inclusive because neuro diversity at its most inclusive is anything that has diverse neurology as part of its definition.
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So,
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if we're going to expand it beyond autism and attention deficit,
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that we're really going to um be expanding it to include everything with diverse neurology.
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And so that's going to include things like spinal cord injury,
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stroke,
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cerebral palsy,
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parkinson's traumatic brain injury,
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encephalitis,
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brain tumor,
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multiple sclerosis,
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hydrocephalus,
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Alzheimer's disease,
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and all other forms of dementia,
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all learning difficulties,
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intellectual disability and so on.
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If we're going to use the umbrella to be all inclusive of neurologic diversity,
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we are essentially going to be talking about all neurologic conditions.
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In which case,
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we really kind of lost the meaning of the term itself.
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So I'm not sure that it's as powerful a term or meaningful a term.
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But if that's what we prefer,
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we certainly can do this.
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I just think at some point,
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we'll need to decide what meaning do we want the term to include and to be specific,
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knowing that there are a lot of neuro diverse conditions that would have to be under the umbrella if we're going to be all inclusive for neuro diverse conditions.
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So,
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in summary,
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so far,
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I would suggest that we think about what kind of meaning we want the term to have as far as neurology.
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And then also are we able to approach autism in a way that acknowledges all the strengths and the struggles that each individual presents with?
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Always understanding that in all of this mix,
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every person is filled with inherent value and you are important and your importance is never defined by strengths or limitations and you will always have a mix of both because you are human.
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Now,
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in this final section will be addressing an opinion that some have put forth that states that it's really not okay for individuals without an autism diagnosis or some form of neurodivergent diagnosis.
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Again,
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this is ill defined,
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but it's not all right for these individuals to provide services or input to autistic individuals essentially,
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only autistic providers should serve those on the spectrum.
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Uh For example,
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there are some workplaces that serve neurodivergent clients and only hire those with neurodivergent diagnoses.
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I think my response to this is similar to my response to the topics that we've covered so far,
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which is basically that I think the truth and the life and the best outcomes are often found in the center rather than um at either categorical opinion.
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So anytime we're tempted to go for that uh kind of simple,
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straightforward,
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only this and never that kind of thought process,
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we're really limiting the truth and limiting the good that we'll find in the complex middle.
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And in this case,
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I think the wonderful thing about this approach is it does emphasize uh welcoming all kinds of diverse inputs to discussion services and program development as far as they do go,
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which is neuro diversity that we bring together the neuro diverse to serve the neuro diverse.
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Now,
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I love to hear people's stories,
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their opinions,
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their perspectives and whether those are from the autistic individual,
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their friends,
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their family members,
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whether those are from individuals and a helping profession,
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anyone,
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it enriches me over and over and over again.
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However,
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I think saying that only autistic providers should come alongside the autistic to provide input is limiting in a way that would work against the greatest good.
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Not because the autistic providers viewpoint is not valid or in some way less than others viewpoint.
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But because the breadth of specialization and experience that benefits individuals is so huge that no one group of individuals can ever cover all of that information.
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And I think if we tap into our diverse knowledge and experience that we will have the richest information to share.
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So having occupational therapists and neurologists and neuropsychologist,
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experts in academic learning and nutrition,
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all of these things are so beneficial,
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such richness of knowledge and experience that it's the exchange here that brings the blessing.
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It's increasing the diversity of input that brings the blessing.
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And some of these individuals in their specialization will be on the spectrum and some will not in other examples.
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You know,
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if I had multiple sclerosis and I would only receive care from a neurologist who had the same diagnosis.
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I would be limiting some of my um options.
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There may not be someone available.
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Uh This person may not be as experienced as someone else.
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Um I may be limiting where I could have a whole team of people.
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Maybe I'm saying no,
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I just want this one person.
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It would get even more difficult if I had two conditions,
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right?
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That I have multiple sclerosis and congestive heart failure.
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Now,
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do I have to find a provider that has both or I can see a heart provider that also has congestive heart failure?
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It's not that there's not value in getting input from others who share characteristics about your life and have walked in your shoes and get it.
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I think that's really valuable.
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But there's also value in getting input from those who don't share the same characteristics,
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but they have areas of expertise that they can offer some input that you wouldn't get in other places.
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Essentially,
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we're talking about the benefits of diversity and getting diverse input.
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When you have some struggles or limitations in any form of your life,
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then you get to take in the perspectives of all those other people and you decide what's helpful to you.
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But you have a lot of diverse input and rather than limiting the input,
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you're getting,
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you get to take in this information process it and say this has really helped me.
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This is not helpful to me and you get to be the filter for what you take into your own life.
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This is a really complex topic.
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There's a lot of emotions involved.
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I think in the end,
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what I'm saying is just that being able to be in the center of complexity helps me the most to understand the good and the difficult,
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the strength and the struggle of all kinds of human experience.
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And I would emphasize that the inherent value of the person is in their personhood and that never changes.
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So whether we're working with someone on something that they're celebrating or something that they're grieving,
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we can come along either way and say you are important,
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your personhood,
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you have this inherent value.
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I value that you've come,
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I value your story and your input and let me come alongside you and add what I can to your journey.
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I'm glad that you joined me today and that you're part of this podcast community and I hope you join me next time for another great topic.