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: 1 00:00:05,840 -- 00:00:07,080 Hi everyone, 2 00:00:07,090 -- 00:00:14,860 this is Dr Theresa Regan and thank you for joining me for a new episode of autism in the adult podcast. 3 00:00:14,870 -- 00:00:29,450 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. 4 00:00:30,340 -- 00:00:35,610 I'm happy to share my experiences about this as a neuropsychologist, 5 00:00:36,040 -- 00:00:41,260 a certified autism specialist and the mother of a teen on the spectrum. 6 00:00:42,940 -- 00:00:59,850 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. 7 00:01:00,940 -- 00:01:14,180 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, 8 00:01:14,180 -- 00:01:26,360 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. 9 00:01:27,740 -- 00:01:28,970 And indeed, 10 00:01:28,980 -- 00:01:30,890 in the diagnostic manual, 11 00:01:30,890 -- 00:02:01,470 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. 12 00:02:01,470 -- 00:02:01,980 So, 13 00:02:01,990 -- 00:02:03,710 for example, 14 00:02:03,720 -- 00:02:12,950 if somebody is really triggered and has flashbacks in a certain environment related to trauma, 15 00:02:13,740 -- 00:02:21,760 we don't want to call that autism and perhaps we can tell the difference because in other setting, 16 00:02:21,770 -- 00:02:29,360 they really seem to feel centered and to interact easily with others and not show the same pattern. 17 00:02:29,370 -- 00:02:38,350 Or perhaps someone just has a real struggle connecting with a certain person because of past experiences. 18 00:02:38,350 -- 00:02:46,160 But their ability to connect across environments with a large range of people is where we would expect it to be. 19 00:02:47,740 -- 00:02:48,430 So, 20 00:02:48,430 -- 00:02:50,470 there is a reason that, 21 00:02:50,480 -- 00:02:51,200 you know, 22 00:02:51,210 -- 00:03:00,360 the emphasis is placed on the fact that this is something seen across time and across context. 23 00:03:01,240 -- 00:03:03,030 But at the same time, 24 00:03:03,340 -- 00:03:14,460 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. 25 00:03:15,740 -- 00:03:21,990 So this first episode is going to be about some foundational things, 26 00:03:22,000 -- 00:03:23,260 how the brain works. 27 00:03:23,260 -- 00:03:28,360 We're going to talk about the criteria and what the text actually says. 28 00:03:28,740 -- 00:03:36,660 and we're going to talk about the trajectory of some of the changes that we can see within autism across the lifespan. 29 00:03:37,340 -- 00:03:49,400 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. 30 00:03:50,240 -- 00:04:01,960 The third episode will have to do with hormonal shifts and the impact of shifting biochemistry on those autistic characteristics. 31 00:04:02,540 -- 00:04:15,550 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, 32 00:04:15,560 -- 00:04:16,670 pregnancy, 33 00:04:16,680 -- 00:04:18,960 breast feeding and menopause. 34 00:04:18,970 -- 00:04:24,970 And the fourth and final episode will be about aging and autism. 35 00:04:24,970 -- 00:04:30,680 What to expect or what we typically see across the aging period. 36 00:04:30,690 -- 00:04:36,970 And this episode will focus on the fifth decade of life and onwards. 37 00:04:36,970 -- 00:04:38,390 So fifties, 38 00:04:38,390 -- 00:04:38,890 sixties, 39 00:04:38,890 -- 00:04:39,430 seventies, 40 00:04:39,430 -- 00:04:40,130 etcetera. 41 00:04:40,140 -- 00:04:50,950 We're going to capture what the aging brain may shift as far as how those characteristics are experienced. 42 00:04:53,740 -- 00:05:07,860 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. 43 00:05:09,340 -- 00:05:10,180 Well, 44 00:05:10,190 -- 00:05:14,110 let's talk about the brain itself. 45 00:05:14,170 -- 00:05:17,560 So as we've talked about in other episodes, 46 00:05:17,940 -- 00:05:26,440 autism is a developmental neurologic condition reflecting how the brain has developed, 47 00:05:26,440 -- 00:05:33,730 how the wiring has been established in this early developmental period. 48 00:05:33,740 -- 00:05:47,680 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. 49 00:05:47,690 -- 00:05:48,290 Now, 50 00:05:48,300 -- 00:05:50,560 as the brain develops, 51 00:05:50,560 -- 00:05:52,990 because it is a physical part of the body, 52 00:05:53,000 -- 00:06:01,240 you can see shifts in what those characteristics look like over time because the brain is evolving, 53 00:06:01,240 -- 00:06:08,870 it's developing. And the brain does not stop physically developing until about age 20, 21... 54 00:06:09,540 -- 00:06:11,910 That early adult period. 55 00:06:11,920 -- 00:06:17,160 And so there's a lot of development that's going on all through childhood, 56 00:06:17,170 -- 00:06:24,400 really getting up into the 20's and in the context of the brain, 57 00:06:24,400 -- 00:06:26,620 as a part of the body developing. 58 00:06:26,630 -- 00:06:35,060 You can certainly see shifts in what that feels like and what it looks like in varying individuals. 59 00:06:35,740 -- 00:06:44,150 One person may feel like some of the characteristics that were challenging to them and childhood have calmed down. 60 00:06:44,150 -- 00:06:46,760 Some may feel that they, 61 00:06:46,770 -- 00:06:47,080 you know, 62 00:06:47,080 -- 00:06:55,790 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. 63 00:06:56,040 -- 00:06:59,270 But the development of physical development, 64 00:06:59,370 -- 00:07:09,750 the foundation of the neurology occurring over that long period of time is one of the reasons that the experience and expression can shift. 65 00:07:11,540 -- 00:07:12,540 In addition, 66 00:07:12,540 -- 00:07:17,840 there are changes in the biochemistry of the body, 67 00:07:17,850 -- 00:07:19,390 including hormones. 68 00:07:19,390 -- 00:07:31,590 And we alluded to that when I talked about the episode and hormones are supposed to change body organs and this includes the brain, 69 00:07:31,600 -- 00:07:33,300 so different parts of the body, 70 00:07:33,300 -- 00:07:34,580 the muscles, 71 00:07:34,590 -- 00:07:35,960 the vocal cords, 72 00:07:35,970 -- 00:07:41,560 lots of different parts are impacted by the release of hormones. 73 00:07:41,840 -- 00:07:44,750 And the brain is changed as well. 74 00:07:45,140 -- 00:07:47,880 That's part of the function of hormones. 75 00:07:48,540 -- 00:08:06,260 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, 76 00:08:06,440 -- 00:08:20,550 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. 77 00:08:20,550 -- 00:08:23,950 So the changes in the biochemistry, 78 00:08:24,440 -- 00:08:33,350 this also can occur during hormonal shifts as we stated within the female autistic individual over her lifespan. 79 00:08:34,240 -- 00:08:38,460 And with aging there will be some biochemical shifts as well. 80 00:08:40,940 -- 00:08:46,060 It's not only the physical part that changes in our life. 81 00:08:46,060 -- 00:08:50,750 So the anatomy and the developmental piece... the biochemistry, 82 00:08:50,750 -- 00:08:53,860 but also our environment changes. 83 00:08:54,340 -- 00:09:00,480 And this happens both with the environmental demand on us. 84 00:09:00,490 -- 00:09:03,330 How much are we being requested to do? 85 00:09:03,340 -- 00:09:05,220 How complicated is it? 86 00:09:05,220 -- 00:09:07,250 How fast is it coming at us? 87 00:09:07,260 -- 00:09:09,780 How much is changing at one time? 88 00:09:09,780 -- 00:09:11,560 How much do I have to adapt to? 89 00:09:12,440 -- 00:09:13,450 But also, 90 00:09:13,450 -- 00:09:17,810 the amount of support we're offered in the environment will also shift. 91 00:09:17,840 -- 00:09:21,960 And sometimes that has to do with just life circumstances. 92 00:09:21,980 -- 00:09:23,320 For example, 93 00:09:23,320 -- 00:09:34,760 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. 94 00:09:35,740 -- 00:09:39,120 But also it will change with life seasons. 95 00:09:39,220 -- 00:10:01,050 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 96 00:10:01,060 -- 00:10:18,140 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, 97 00:10:18,150 -- 00:10:23,120 we can think about what has been shifting in this person's life. 98 00:10:23,130 -- 00:10:27,560 Is there a new stressor, is more being demanded of them, 99 00:10:27,840 -- 00:10:29,320 Have things changed? 100 00:10:29,320 -- 00:10:31,490 Have supports has been removed. 101 00:10:31,500 -- 00:10:32,550 For example, 102 00:10:32,550 -- 00:10:38,960 the individual that's used to working the same job for 30 years and retires. 103 00:10:39,340 -- 00:10:39,780 Boy. 104 00:10:39,780 -- 00:10:46,360 That's a huge shift in the environmental structure that is offered to this person. 105 00:10:46,740 -- 00:10:50,620 Now there is a reduction in demand in some ways, 106 00:10:50,630 -- 00:10:58,640 although the demand was so repetitious by that time it was something the person was so used to. 107 00:10:58,650 -- 00:11:03,730 And now all of a sudden the demand actually is to structure yourself, 108 00:11:03,740 -- 00:11:06,260 fill your life with meaningful activities. 109 00:11:06,640 -- 00:11:15,120 And that kind of shift in the environment and shift in life season can bring about changes. 110 00:11:15,130 -- 00:11:16,380 And people around 111 00:11:16,380 -- 00:11:20,180 the individual may comment that they seem different. 112 00:11:20,190 -- 00:11:22,440 Things aren't quite going as before. 113 00:11:22,450 -- 00:11:29,950 Or the person themselves may feel that they just can't get in the same rhythm they were and they just feel different. 114 00:11:32,940 -- 00:11:53,660 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. 115 00:11:54,940 -- 00:12:02,020 So as I said in the diagnostic manual and this manual that I'm referring to is the D. 116 00:12:02,020 -- 00:12:02,300 S. 117 00:12:02,300 -- 00:12:02,580 M. 118 00:12:02,580 -- 00:12:10,750 Five which is the diagnostic manual that clinicians use in the United States. 119 00:12:10,750 -- 00:12:20,750 So it's called the diagnostic and statistical manual 5th edition. therapists and psychologists and clinicians use this. 120 00:12:21,130 -- 00:12:27,450 Sometimes people in other contexts or other geographic areas use the i. 121 00:12:27,450 -- 00:12:27,640 c. 122 00:12:27,640 -- 00:12:27,800 d. 123 00:12:27,800 -- 00:12:28,450 10. 124 00:12:28,740 -- 00:12:40,260 But in general I'm going to review Information from the DSM5 and I'm going to give some page numbers to reference. 125 00:12:41,140 -- 00:13:07,760 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. 126 00:13:09,160 -- 00:13:18,860 This does make sense because the neurologic framework would not be expected to just come and go from day to day. 127 00:13:18,860 -- 00:13:22,460 That's kind of the anatomical framework. 128 00:13:23,240 -- 00:13:23,960 However, 129 00:13:23,960 -- 00:13:36,850 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-- 130 00:13:37,240 -- 00:13:56,260 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. 131 00:13:57,940 -- 00:14:07,470 So if we read on page 50 and page 53 what the manual says is the symptoms are present from early childhood. 132 00:14:07,470 -- 00:14:26,490 "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. 133 00:14:26,500 -- 00:14:38,860 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) 134 00:14:40,040 -- 00:14:40,430 So. 135 00:14:40,430 -- 00:14:40,750 Again, 136 00:14:40,750 -- 00:14:50,330 the stage at which functional impairment becomes obvious will vary according to characteristics of the individual. 137 00:14:50,400 -- 00:14:56,000 So this is what we referred to earlier as far as the person, 138 00:14:56,000 -- 00:14:57,340 the physical person, 139 00:14:57,340 -- 00:15:04,960 the biochemical person and the characteristics of the individual and his or her environment. 140 00:15:05,740 -- 00:15:13,660 So we tapped into this when we talked about the assistance in the environment and the demand of the environment. 141 00:15:15,210 -- 00:15:16,200 It continues. 142 00:15:16,200 -- 00:15:28,400 The symptoms may not be fully manifest until social demands exceed limited capacities or maybe masked by learned strategies. 143 00:15:28,940 -- 00:15:29,270 So, 144 00:15:29,270 -- 00:15:46,570 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. 145 00:15:46,580 -- 00:15:59,950 And then the difficulties that were there all along may become manifest when the demands exceed their limited capacity. 146 00:16:01,940 -- 00:16:09,120 Intervention compensation and supports may mask difficulties in at least some context. 147 00:16:09,130 -- 00:16:10,030 So, 148 00:16:10,030 -- 00:16:10,510 again, 149 00:16:10,510 -- 00:16:28,820 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. 150 00:16:28,820 -- 00:16:30,510 On page 53, 151 00:16:30,520 -- 00:16:42,130 the manual states the verbal and nonverbal deficits in social communication have varying manifestations depending on the individual's age, 152 00:16:42,140 -- 00:16:44,970 intellectual level and language ability, 153 00:16:45,000 -- 00:16:50,470 as well as other factors such as treatment history and current supports. 154 00:16:52,740 -- 00:16:54,490 On page 56, 155 00:16:54,500 -- 00:16:58,970 the characteristics are also impacted by compensation strategies. 156 00:16:58,980 -- 00:17:07,430 "for some, social challenges are still a struggle in novel or unsupported situations." 158 00:17:08,790 -- 00:17:09,870 although you know, 159 00:17:09,870 -- 00:17:13,930 the person may cope better with them in other situations. 160 00:17:16,340 -- 00:17:19,770 The manual also states that when you're doing an assessment, 161 00:17:19,780 -- 00:17:23,860 it's important to get multiple sources of information. 162 00:17:23,870 -- 00:17:34,620 So diagnosis should not only be based on one source of information like the school or or one on one observations, 163 00:17:34,630 -- 00:17:47,210 but it should put together this whole constellation of observations across context because the person's behavior and interactions will not look the same 164 00:17:47,210 -- 00:17:50,460 from everyone's perspective or in every context. 165 00:17:54,740 -- 00:17:55,460 Additionally, 166 00:17:55,460 -- 00:17:56,810 on page 51, 167 00:17:56,820 -- 00:18:04,670 it states that quote severity may vary by context and fluctuate over time. 168 00:18:05,910 -- 00:18:06,470 Therefore, 169 00:18:06,470 -- 00:18:07,960 as we can see, 170 00:18:08,790 -- 00:18:22,010 the manual is trying to emphasize a balance between understanding that there is a neurologic foundation in the autistic profile, that is, 171 00:18:22,080 -- 00:18:28,490 a kind of base, but that different things will change this base. 172 00:18:29,240 -- 00:18:31,130 The brain develops, 173 00:18:31,140 -- 00:18:33,850 the brain is shifted by hormones, 174 00:18:33,850 -- 00:18:35,450 the brain ages, 175 00:18:36,440 -- 00:18:38,860 chemistry changes etcetera. 176 00:18:39,940 -- 00:18:42,140 Also the environment changes, 177 00:18:42,140 -- 00:18:43,640 the demands change. 178 00:18:43,650 -- 00:18:43,860 Oh, 179 00:18:43,860 -- 00:18:46,300 I've never been asked to do this before. 180 00:18:46,320 -- 00:18:53,250 Now I'm being asked to do it frequently and the supports that I used to have just aren't even there. 181 00:18:53,280 -- 00:19:05,140 So now there's this manifesting of different things or perhaps someone really was just feeling really centered doing well at work, 182 00:19:05,150 -- 00:19:07,020 had nice relationships. 183 00:19:07,540 -- 00:19:24,550 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. 184 00:19:26,840 -- 00:19:31,910 Even if people are using the severity levels that the D. 185 00:19:31,910 -- 00:19:32,150 S. 186 00:19:32,150 -- 00:19:34,960 M suggests can be used. 187 00:19:35,840 -- 00:19:46,860 The manual emphasizes that those levels can change over time and that is because of what we've discussed that things change. 188 00:19:47,540 -- 00:19:49,250 The person changes, 189 00:19:49,260 -- 00:19:51,010 the environment changes, 190 00:19:51,020 -- 00:20:03,160 seasons change and it is expected that there will be some shifts and how the person is experiencing. 191 00:20:03,170 -- 00:20:28,990 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. 192 00:20:29,000 -- 00:20:37,560 I see that there's a difference in how this person tolerates some of the relational ambiguity that we're having. 193 00:20:38,240 -- 00:20:53,060 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. 194 00:20:55,030 -- 00:20:57,730 This helps us when we see these shifts, 195 00:20:57,880 -- 00:21:04,740 it helps us to feel less confused and to understand the context that yes, 196 00:21:04,740 -- 00:21:05,770 this happens. 197 00:21:06,140 -- 00:21:09,350 Um and this may be why, 198 00:21:09,360 -- 00:21:09,700 you know, 199 00:21:09,700 -- 00:21:13,450 there have been these shifts in physical function, 200 00:21:13,450 -- 00:21:18,240 there have been these shifts in environmental demand and support, 201 00:21:18,250 -- 00:21:27,350 and now we can try to focus on understanding and coming alongside this individual to feel more centered. 202 00:21:32,040 -- 00:21:34,700 This is our foundational episode. 203 00:21:34,710 -- 00:21:36,610 And as I said, 204 00:21:36,610 -- 00:21:49,790 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. 205 00:21:49,800 -- 00:21:50,240 You know, 206 00:21:50,240 -- 00:21:52,610 adolescence and young adulthood period. 207 00:21:52,620 -- 00:21:57,750 A lot of shifting goes on during that time and I can't wait to talk to you guys about it. 208 00:21:57,760 -- 00:21:59,270 Please join me next time.

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