Join Dr. Regan for the first episode in her new series about how autistic characteristics may shift across the lifespan. This episode focuses on why this happens (i.e., changes in the individual and the environment). Stay tuned for the next episodes in the series to hear about changes during adolescence, hormonal shifts in women, and aging (50's and beyond).
Dr. Regan's Resources
New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Audiobook
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
Read the Episode Transcript:
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Hi everyone,
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this is Dr Theresa Regan and thank you for joining me for a new episode of autism in the adult podcast.
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We are starting a new series today and it is going to focus on how the characteristics of autism may shift in their expression or in the experience of the individual across the lifespan.
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I'm happy to share my experiences about this as a neuropsychologist,
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a certified autism specialist and the mother of a teen on the spectrum.
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We are starting this new series and I plan to have four episodes that are outlining some of these shifts that we can see in what autism feels like and what it looks like across the lifespan of the individual.
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The reason that I want to focus on this topic is that it does feel confusing to many people as to why would there be shifts? if I'm seeing something that changes over time,
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doesn't it mean that something new has happened or that it's not related to an underlying kind of neurologic framework that is part of the foundation of the brain itself.
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And indeed,
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in the diagnostic manual,
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many clinicians really focused on an important part of the criteria which is that the characteristics have to be present across multiple contexts in order to make this diagnosis -- and that is to safeguard from having a diagnosis established when in fact there's just something about the environment or the combination of the environment and the person that triggers similar characteristics.
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So,
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for example,
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if somebody is really triggered and has flashbacks in a certain environment related to trauma,
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we don't want to call that autism and perhaps we can tell the difference because in other setting,
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they really seem to feel centered and to interact easily with others and not show the same pattern.
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Or perhaps someone just has a real struggle connecting with a certain person because of past experiences.
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But their ability to connect across environments with a large range of people is where we would expect it to be.
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So,
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there is a reason that,
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you know,
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the emphasis is placed on the fact that this is something seen across time and across context.
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But at the same time,
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I think we need to understand that there can be shifts in what the characteristics feel like and how they are expressed or what they look like to other people.
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So this first episode is going to be about some foundational things,
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how the brain works.
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We're going to talk about the criteria and what the text actually says.
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and we're going to talk about the trajectory of some of the changes that we can see within autism across the lifespan.
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The second episode I'm planning will have to do with that age range of adolescence through young adulthood and changes that we may see during that period of time.
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The third episode will have to do with hormonal shifts and the impact of shifting biochemistry on those autistic characteristics.
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A good part of this discussion will center around autism and women as we'll be talking about various hormone shifts in adulthood that will include monthly cycles,
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pregnancy,
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breast feeding and menopause.
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And the fourth and final episode will be about aging and autism.
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What to expect or what we typically see across the aging period.
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And this episode will focus on the fifth decade of life and onwards.
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So fifties,
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sixties,
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seventies,
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etcetera.
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We're going to capture what the aging brain may shift as far as how those characteristics are experienced.
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So today you are joining me just for some foundational discussion about ... why would we expect there to be shifts in how this neurologic behavioral pattern is expressed.
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Well,
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let's talk about the brain itself.
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So as we've talked about in other episodes,
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autism is a developmental neurologic condition reflecting how the brain has developed,
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how the wiring has been established in this early developmental period.
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And the manual does note that the characteristics must be present in the developmental period and that they need to be present across multiple contexts.
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Now,
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as the brain develops,
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because it is a physical part of the body,
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you can see shifts in what those characteristics look like over time because the brain is evolving,
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it's developing. And the brain does not stop physically developing until about age 20, 21...
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That early adult period.
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And so there's a lot of development that's going on all through childhood,
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really getting up into the 20's and in the context of the brain,
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as a part of the body developing.
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You can certainly see shifts in what that feels like and what it looks like in varying individuals.
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One person may feel like some of the characteristics that were challenging to them and childhood have calmed down.
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Some may feel that they,
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you know,
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hit a point where things are quite a bit harder for a season and we'll talk about why that might be in these later episodes.
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But the development of physical development,
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the foundation of the neurology occurring over that long period of time is one of the reasons that the experience and expression can shift.
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In addition,
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there are changes in the biochemistry of the body,
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including hormones.
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And we alluded to that when I talked about the episode and hormones are supposed to change body organs and this includes the brain,
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so different parts of the body,
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the muscles,
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the vocal cords,
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lots of different parts are impacted by the release of hormones.
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And the brain is changed as well.
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That's part of the function of hormones.
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Adolescence is well known for this period of time where people don't act like themselves in some ways. they seem very intense or just that that that period of time as the brain is kind of bathed in these chemicals,
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there can be a shift in emotional expression and behavioral patterns and connecting with others and that is true for every human and certainly for those on the spectrum as well.
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So the changes in the biochemistry,
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this also can occur during hormonal shifts as we stated within the female autistic individual over her lifespan.
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And with aging there will be some biochemical shifts as well.
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It's not only the physical part that changes in our life.
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So the anatomy and the developmental piece... the biochemistry,
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but also our environment changes.
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And this happens both with the environmental demand on us.
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How much are we being requested to do?
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How complicated is it?
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How fast is it coming at us?
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How much is changing at one time?
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How much do I have to adapt to?
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But also,
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the amount of support we're offered in the environment will also shift.
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And sometimes that has to do with just life circumstances.
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For example,
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someone in our life is no longer there or we change jobs and the demands on us are different or we had no children now all of a sudden we have twins.
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But also it will change with life seasons.
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So as a youngster becomes older and they're not in kindergarten anymore - they're in the third grade and then they're in the sixth grade and you start to get into this season of life where more and more independence is asked of you and less environmental support is given
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while the demands continue to increase. When we see something that has changed that the person's experience of the autism characteristics feels different or the person's expression feels different to others,
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we can think about what has been shifting in this person's life.
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Is there a new stressor, is more being demanded of them,
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Have things changed?
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Have supports has been removed.
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For example,
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the individual that's used to working the same job for 30 years and retires.
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Boy.
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That's a huge shift in the environmental structure that is offered to this person.
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Now there is a reduction in demand in some ways,
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although the demand was so repetitious by that time it was something the person was so used to.
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And now all of a sudden the demand actually is to structure yourself,
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fill your life with meaningful activities.
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And that kind of shift in the environment and shift in life season can bring about changes.
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And people around
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the individual may comment that they seem different.
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Things aren't quite going as before.
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Or the person themselves may feel that they just can't get in the same rhythm they were and they just feel different.
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Let's talk for a moment about why someone who is versed in autism may argue that changes in the characteristics of autism should not be seen or that we wouldn't expect it to or that shifts are evidence that it's really not a neurologic pattern.
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So as I said in the diagnostic manual and this manual that I'm referring to is the D.
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S.
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M.
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Five which is the diagnostic manual that clinicians use in the United States.
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So it's called the diagnostic and statistical manual 5th edition. therapists and psychologists and clinicians use this.
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Sometimes people in other contexts or other geographic areas use the i.
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c.
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d.
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10.
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But in general I'm going to review Information from the DSM5 and I'm going to give some page numbers to reference.
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So when you look up the criteria for autism on the internet you will get the diagnostic criteria and you will see the sentences there about how the characteristics are supposed to be present in the developmental period and are also supposed to be seen across a variety of contexts so that we have this implication of consistency to some extent.
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This does make sense because the neurologic framework would not be expected to just come and go from day to day.
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That's kind of the anatomical framework.
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However,
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if individuals don't read from the actual manual -- because there are I don't know eight or 10 additional pages that explain what the criteria mean--
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This person may be under the assumption that if there's any variation or if people didn't notice some of the characteristics in early life and they seem to emerge in middle school that that negates the possible diagnosis.
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So if we read on page 50 and page 53 what the manual says is the symptoms are present from early childhood.
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"However the stage at which functional impairment becomes obvious (and I'll just interject here that what they're referring to is the stage at which someone may uh seem to be struggling with some of these things that this is causing them to stress.
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It's causing difficulty with age appropriate life skills or they're having to use so much more energy to do something that their peers are doing)
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So.
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Again,
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the stage at which functional impairment becomes obvious will vary according to characteristics of the individual.
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So this is what we referred to earlier as far as the person,
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the physical person,
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the biochemical person and the characteristics of the individual and his or her environment.
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So we tapped into this when we talked about the assistance in the environment and the demand of the environment.
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It continues.
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The symptoms may not be fully manifest until social demands exceed limited capacities or maybe masked by learned strategies.
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So,
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what this is saying is that it very well can be that little kiddos get along pretty well because not much reciprocity is demanded of them in their early life or in the context in which they are at.
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And then the difficulties that were there all along may become manifest when the demands exceed their limited capacity.
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Intervention compensation and supports may mask difficulties in at least some context.
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So,
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again,
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we see that the person's way of coping with things or hiding things or masking things can bring about some variation in context and can hide some of the difficulties that have been there all along Again.
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On page 53,
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the manual states the verbal and nonverbal deficits in social communication have varying manifestations depending on the individual's age,
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intellectual level and language ability,
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as well as other factors such as treatment history and current supports.
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On page 56,
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the characteristics are also impacted by compensation strategies.
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"for some, social challenges are still a struggle in novel or unsupported situations."
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although you know,
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the person may cope better with them in other situations.
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The manual also states that when you're doing an assessment,
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it's important to get multiple sources of information.
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So diagnosis should not only be based on one source of information like the school or or one on one observations,
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but it should put together this whole constellation of observations across context because the person's behavior and interactions will not look the same
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from everyone's perspective or in every context.
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Additionally,
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on page 51,
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it states that quote severity may vary by context and fluctuate over time.
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Therefore,
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as we can see,
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the manual is trying to emphasize a balance between understanding that there is a neurologic foundation in the autistic profile, that is,
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a kind of base, but that different things will change this base.
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The brain develops,
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the brain is shifted by hormones,
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the brain ages,
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chemistry changes etcetera.
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Also the environment changes,
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the demands change.
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Oh,
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I've never been asked to do this before.
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Now I'm being asked to do it frequently and the supports that I used to have just aren't even there.
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So now there's this manifesting of different things or perhaps someone really was just feeling really centered doing well at work,
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had nice relationships.
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Uh But then you know something happened where there was a trauma or the death of a loved one and the things that felt really balanced began to feel unbalanced and really difficult to manage during that season.
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Even if people are using the severity levels that the D.
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S.
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M suggests can be used.
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The manual emphasizes that those levels can change over time and that is because of what we've discussed that things change.
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The person changes,
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the environment changes,
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seasons change and it is expected that there will be some shifts and how the person is experiencing.
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You know the level of anxiety or sleep disturbance or the ability to connect with others or the amount of resilience they have or the sensory processing um how flexible they feel and how other people experience those that other people say wow I'm really noticing the shift in our relationship now and it's confusing to me.
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I see that there's a difference in how this person tolerates some of the relational ambiguity that we're having.
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What we expect is that there will be this neurologic base that is somewhat steady and there will also be shifts based on seasons of life.
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This helps us when we see these shifts,
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it helps us to feel less confused and to understand the context that yes,
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this happens.
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Um and this may be why,
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you know,
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there have been these shifts in physical function,
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there have been these shifts in environmental demand and support,
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and now we can try to focus on understanding and coming alongside this individual to feel more centered.
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This is our foundational episode.
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And as I said,
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we'll be reviewing seasons of the lifespan in our next three episodes and this first one coming up will be that emergence from young childhood into this.
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You know,
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adolescence and young adulthood period.
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A lot of shifting goes on during that time and I can't wait to talk to you guys about it.
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Please join me next time.
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