Join Dr. Regan for this first episode of the new series "Talking About Autism." This episode focuses on talking about autism when you are on a journey toward diagnosis and after you have received a diagnosis. 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 Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians Read the transcript: 1 00:00:03,540 -- 00:00:07,840 Hello and welcome to this episode of Autism in the Adult. 2 00:00:07,880 -- 00:00:09,020 I am your host, 3 00:00:09,020 -- 00:00:10,510 Dr Theresa Regan. 4 00:00:10,520 -- 00:00:12,600 I'm a neuropsychologist. 5 00:00:12,620 -- 00:00:15,060 I am a certified autism specialist, 6 00:00:15,440 -- 00:00:23,750 the director of an autism diagnostic clinic for adults in central Illinois, and the mother of a teen and the spectrum. 7 00:00:24,550 -- 00:00:27,630 I am starting a new series of episodes today. 8 00:00:28,040 -- 00:00:33,040 I think this may end up being a 3-4 part series. 9 00:00:33,040 -- 00:00:34,330 We'll see how it goes. 10 00:00:34,340 -- 00:00:40,060 Um and basically the series is going to be called "Talking About Autism." 11 00:00:40,440 -- 00:00:50,490 And this was a listener request... from multiple listeners that have emailed about "How do I talk about this to other people, 12 00:00:50,490 -- 00:00:52,570 whether that's my own diagnosis, 13 00:00:52,570 -- 00:00:56,720 whether that's talking to people that I think may be on the spectrum, 14 00:00:56,720 -- 00:01:07,320 but they haven't been thinking in that direction... and how do I navigate all the emotion that sometimes comes with these kinds of discussions?" 15 00:01:07,320 -- 00:01:12,460 So we're going to take some time to sort through some of those topics. 16 00:01:13,340 -- 00:01:22,680 I believe that this topic is really important, and that's why I have set aside to do a series of episodes about the topic. 17 00:01:22,690 -- 00:01:31,780 I also feel like this is probably one of the most challenging episodes that I've put my mind to here. 18 00:01:31,790 -- 00:01:59,210 And that is because in some ways it's a lot easier to present some research and a list of facts and definitions of terms than to talk about these concepts and experiences and to wrap words around things that are perhaps more personal or experiential is a little more challenging, but worth it I think... 19 00:01:59,210 -- 00:02:00,260 but challenging. 20 00:02:00,270 -- 00:02:05,960 And one of the challenges is probably to make some organization of it. 22 00:02:06,750 -- 00:02:11,650 ... So there's some cohesion in what we're talking about in each episode. 23 00:02:12,140 -- 00:02:13,810 So in this first episode, 24 00:02:13,810 -- 00:02:22,700 I'm going to cover the topic of talking about your own autism diagnosis to other people, 25 00:02:22,700 -- 00:02:25,060 and I'm going to cover two things. 26 00:02:25,060 -- 00:02:37,560 One is if you're an individual who's thinking about starting a journey toward evaluation, and you're talking to people about your desire to do this, 27 00:02:37,940 -- 00:02:38,340 um, 28 00:02:38,340 -- 00:02:45,270 some of what we review will have to do with this kind of process ... this starting of that journey. 29 00:02:45,280 -- 00:02:46,590 And also, 30 00:02:46,590 -- 00:02:50,800 then we'll finish by talking about once you have a diagnosis, 31 00:02:50,810 -- 00:02:51,930 um, 32 00:02:51,940 -- 00:02:54,270 who do you talk to about it? 33 00:02:54,280 -- 00:02:55,960 How do you bring it up? 34 00:02:56,340 -- 00:02:56,890 Um, 35 00:02:56,900 -- 00:03:00,750 how does that go after you have a diagnosis? 36 00:03:01,140 -- 00:03:01,660 Um, 37 00:03:01,660 -- 00:03:13,960 so we're going to jump in first with that process that perhaps you're someone who's been thinking about yourself or been thinking about, 38 00:03:13,970 -- 00:03:14,870 um, 39 00:03:14,880 -- 00:03:16,890 perhaps your loved one, 40 00:03:16,890 -- 00:03:28,020 Maybe your partner has been thinking about this and wants you to join them in this journey or you have a child or adolescent that you think may be on the spectrum. 41 00:03:28,020 -- 00:03:28,360 And, 42 00:03:28,370 -- 00:03:35,550 and this is just the beginning of a quest to figure out more information. 43 00:03:36,840 -- 00:03:43,910 One of the really unusual things I think about autism as a diagnosis is that for some reason, 44 00:03:43,910 -- 00:04:00,060 and I don't really understand why, everyone really seems to have an opinion about this topic as far as whether you actually are or are not on the spectrum. 45 00:04:01,140 -- 00:04:03,120 And it's, 46 00:04:03,130 -- 00:04:03,780 again, 47 00:04:03,780 -- 00:04:09,280 mystifying to me because it doesn't seem to be based on any professional qualifications. 48 00:04:09,740 -- 00:04:10,330 Um, 49 00:04:10,340 -- 00:04:10,770 you know, 50 00:04:10,770 -- 00:04:17,750 I think someone that you see at the grocery store seems just as adamant about that as your grandmother, 51 00:04:17,750 -- 00:04:19,390 who's just as adamant, 52 00:04:19,400 -- 00:04:21,860 um as your therapist and so forth. 53 00:04:22,540 -- 00:04:33,460 Um it's mystifying in the sense that if someone told me they had a cardiac uh difference that was causing some arrhythmia or whatever, 54 00:04:33,840 -- 00:04:36,020 I would never think to say no, 55 00:04:36,020 -- 00:04:37,180 you don't. 56 00:04:37,320 -- 00:04:39,490 I'm not a cardiologist. 57 00:04:39,500 -- 00:04:42,360 I don't know if you do or not, 58 00:04:42,940 -- 00:04:44,640 and um, 59 00:04:44,650 -- 00:04:50,840 that just doesn't carry over to this neuro behavioral developmental condition. 60 00:04:50,840 -- 00:04:51,260 So, 61 00:04:52,340 -- 00:05:06,610 autism is a physical, neurologic state where the genetic code and the process of development of the brain has produced this less than typical neurology. 62 00:05:06,610 -- 00:05:10,610 So 2% of people 63 00:05:10,620 -- 00:05:17,250 in our population, and that is a percentage that's pretty stable across age groups, 64 00:05:17,250 -- 00:05:18,250 across country, 65 00:05:18,250 -- 00:05:24,220 across research study ... that 2% of people will present with this neurology. 66 00:05:24,220 -- 00:05:26,650 And so it's not very common. 67 00:05:27,340 -- 00:05:28,230 Um, 68 00:05:28,240 -- 00:05:34,130 and yet everyone seems to feel like they could recognize it... and I'm not, 69 00:05:34,140 -- 00:05:35,770 I'm not sure where that comes from, 70 00:05:35,770 -- 00:05:48,970 but that will probably be something you encounter if you say "I've been wondering if I'm on the autism spectrum" or "I've been wondering if my child is on the autism spectrum." 71 00:05:48,970 -- 00:05:55,830 And you'll probably get some immediate responses from people that that is not the case. 72 00:05:55,830 -- 00:05:57,950 And that could range from, 73 00:05:58,340 -- 00:05:58,790 you know, 74 00:05:58,790 -- 00:06:00,860 the physician that you see. 75 00:06:00,860 -- 00:06:02,910 It could be a therapist. 76 00:06:02,910 -- 00:06:07,250 It could be any range of people. 77 00:06:09,040 -- 00:06:20,860 The reason that I bring up this type of encounter is that I think it's often not very helpful because it's non specific. 78 00:06:21,440 -- 00:06:27,290 Um there's often not a reason given and it's not really based in data, 79 00:06:27,290 -- 00:06:38,160 it's kind of based on this general gut feeling or what people expect autism to look like in their neighborhood or their family or their classroom or whatever. 80 00:06:38,640 -- 00:06:39,110 Um, 81 00:06:39,120 -- 00:06:42,260 but it's not really based on substance. 82 00:06:42,840 -- 00:06:54,860 And one of the ways that I have found to kind of defuse that or at least ask for some substance is to say in response to that, 83 00:06:55,440 -- 00:06:55,860 "Oh, 84 00:06:55,860 -- 00:06:56,390 okay. 85 00:06:56,390 -- 00:06:59,410 What criteria don't you think I meet?" 86 00:07:01,040 -- 00:07:04,320 And whenever I've said that, 87 00:07:04,320 -- 00:07:13,660 I've never had anyone who knew the criteria that actually were responding to that or giving this input that autism is incorrect. 88 00:07:14,140 -- 00:07:15,760 Um so again, 89 00:07:16,440 -- 00:07:20,790 unusual that people feel that strongly about it, 90 00:07:21,240 -- 00:07:22,160 um, 91 00:07:22,540 -- 00:07:25,140 and will produce that, 92 00:07:25,150 -- 00:07:25,800 um, 93 00:07:26,040 -- 00:07:27,360 that opinion. 94 00:07:27,740 -- 00:07:33,900 But you can kind of diffuse that if you ask them for more specific data, 95 00:07:33,910 -- 00:07:35,770 more specific information, 96 00:07:35,780 -- 00:07:36,500 um, 97 00:07:36,500 -- 00:07:39,680 you can kind of point out ... and sometimes it's been interesting. 98 00:07:39,680 -- 00:07:40,290 So, 99 00:07:40,300 -- 00:07:41,150 you know, 100 00:07:41,150 -- 00:07:45,240 one person might say to me well I'm a counselor and I'll say, 101 00:07:45,240 -- 00:07:45,480 yeah, 102 00:07:45,480 -- 00:07:47,940 I know... a lot of people don't know the criteria though. 103 00:07:47,940 -- 00:07:51,190 So what criteria don't you think this person meets? 104 00:07:51,640 -- 00:07:52,920 And then she said, 105 00:07:52,920 -- 00:07:53,070 well, 106 00:07:53,070 -- 00:07:55,060 I guess I don't really know the criteria. 107 00:07:55,840 -- 00:07:58,060 So it just helps diffuse that. 108 00:07:58,070 -- 00:07:59,760 And I wouldn't recommend, 109 00:08:00,340 -- 00:08:00,820 you know, 110 00:08:00,820 -- 00:08:03,580 going in guns blazing or anything, 111 00:08:03,660 -- 00:08:05,680 but just in a very matter of fact, 112 00:08:05,690 -- 00:08:10,990 calm way that you'd like their input if it's based in the data, 113 00:08:10,990 -- 00:08:15,550 what kind of observations are they using to say that, 114 00:08:17,440 -- 00:08:17,880 you know, 115 00:08:17,880 -- 00:08:31,410 Another comment that I find non specific and I find this comment to be kind of dismissing 116 00:08:31,410 -- 00:08:44,410 I guess of someone's journey that they're taking toward an evaluation and what can happen unfortunately is the person will say, 117 00:08:44,410 -- 00:08:44,630 "Well, 118 00:08:44,630 -- 00:08:46,120 why do you think that?" 119 00:08:46,130 -- 00:08:55,960 And you'll start to share some of your thoughts and experiences and then you're a bit trapped because they may say, 120 00:08:56,340 -- 00:08:56,780 "Oh yeah, 121 00:08:56,780 -- 00:08:57,760 but I do that too. 122 00:08:57,760 -- 00:08:59,170 And I'm not autistic, 123 00:08:59,180 -- 00:09:00,560 everybody does that." 124 00:09:01,240 -- 00:09:10,350 Um and it just doesn't leave you in any better place than you were. 125 00:09:10,360 -- 00:09:10,680 Again, 126 00:09:10,680 -- 00:09:12,760 it doesn't add anything of substance. 127 00:09:12,760 -- 00:09:14,350 It doesn't clear anything up. 128 00:09:14,840 -- 00:09:23,260 Um And so one thing I find helpful to mention in this kind of dynamic would be to say, 129 00:09:23,840 -- 00:09:24,610 "Well, 130 00:09:24,620 -- 00:09:42,960 that would be like saying that because we all forget things that Alzheimer's dementia isn't really impactful to people, and something may be impactful to an individual because of how frequently it happens or how much distress it causes. 131 00:09:43,340 -- 00:09:44,370 Um So, 132 00:09:44,380 -- 00:09:52,200 so that's the thought process I'm using about my own experiences in the end. 133 00:09:52,200 -- 00:09:56,560 I would never have your goal be ah, 134 00:09:56,940 -- 00:10:00,390 to convince everyone that you come in contact with, 135 00:10:00,390 -- 00:10:02,690 that the journey is relevant. 136 00:10:02,700 -- 00:10:18,650 I think that autism is just such a misunderstood concept that you're going to have people who just are not in the same place that you are, and to go back and forth feeling like your role is to convince people, 137 00:10:18,660 -- 00:10:19,460 um, 138 00:10:19,460 -- 00:10:21,060 is probably not, 139 00:10:21,640 -- 00:10:22,270 um, 140 00:10:22,280 -- 00:10:24,660 not a role that really brings fruit. 141 00:10:25,220 -- 00:10:33,800 And so I would consider letting go that agenda if that's your goal, 142 00:10:33,860 -- 00:10:36,260 that you'll be able to convince everybody. 143 00:10:39,440 -- 00:10:40,950 And interestingly, 144 00:10:40,950 -- 00:10:44,680 as with other complex life situations, 145 00:10:44,680 -- 00:10:53,100 what I find personally is that sometimes the people I expect to be there for me in this situation, 146 00:10:53,110 -- 00:10:57,740 whether that's a celebration or whether I'm grieving about something, 147 00:10:57,750 -- 00:10:58,690 um, 148 00:10:58,700 -- 00:10:59,770 a wedding, 149 00:10:59,770 -- 00:11:00,900 a funeral, 150 00:11:00,910 -- 00:11:01,640 uh, 151 00:11:01,650 -- 00:11:02,630 a promotion, 152 00:11:02,630 -- 00:11:06,240 a move ... sometimes I expect, 153 00:11:06,250 -- 00:11:06,930 you know, 154 00:11:06,930 -- 00:11:17,150 these closest people to be really with me and a lot of times that's not necessarily the case and we may like it to be that way, 155 00:11:17,540 -- 00:11:23,440 but in life I just find that there will always be people that step up that surprise you. 156 00:11:23,450 -- 00:11:23,690 Like, 157 00:11:23,690 -- 00:11:24,150 wow, 158 00:11:24,150 -- 00:11:26,500 I wouldn't have expected you to be the one, 159 00:11:26,510 -- 00:11:27,320 you know, 160 00:11:27,320 -- 00:11:30,190 to kind of step up and meet me in this place. 161 00:11:30,200 -- 00:11:36,860 But I did expect this other person to be able to support me and they're really not able to do that. 162 00:11:37,140 -- 00:11:47,570 So sometimes the journey does involve letting go of some expectations and giving other people the freedom to be in a different place, 163 00:11:47,580 -- 00:11:56,350 allowing yourself to grieve that you're not on the same journey that everyone else is ... that other people don't appreciate that part of your journey. 164 00:11:57,040 -- 00:12:05,960 Um but not getting into the trap of trying to convince people who just aren't really there. 165 00:12:08,640 -- 00:12:23,850 Another comment that I feel is dismissive and very general and non substantive is a comment people make ... I suppose to be um supportive, 166 00:12:24,340 -- 00:12:29,330 but it dismisses some of the complexity of the journey, 167 00:12:29,340 -- 00:12:30,250 I think. 168 00:12:30,260 -- 00:12:32,400 And that is the comment I hear a lot, 169 00:12:32,400 -- 00:12:32,980 which is, 170 00:12:32,980 -- 00:12:33,410 "Well, 171 00:12:33,420 -- 00:12:36,160 I guess everyone's a little autistic these days. 172 00:12:37,040 -- 00:12:39,250 Apparently we're all autistic." 173 00:12:39,260 -- 00:12:39,580 You know, 174 00:12:39,580 -- 00:12:41,260 that kind of comment. 175 00:12:41,940 -- 00:12:49,050 Um actually 2% of individuals meet full criteria for the autism spectrum. 176 00:12:49,440 -- 00:12:50,100 Um, 177 00:12:50,110 -- 00:12:57,360 so it's not this popular fad that everyone's getting diagnosed with. 178 00:12:57,840 -- 00:13:06,360 Um I think there's a lot of emphasis on diagnosis now because we're realizing how many people have been missed or misdiagnosed. 179 00:13:06,840 -- 00:13:07,280 Um, 180 00:13:07,290 -- 00:13:09,490 but everyone's not autistic. 181 00:13:09,500 -- 00:13:13,130 Uh this is an unusual neurologic pattern. 182 00:13:13,140 -- 00:13:14,490 It's unique. 183 00:13:14,500 -- 00:13:21,230 Uh it's not that common and it's really worth paying attention to and realizing, 184 00:13:21,240 -- 00:13:21,770 you know, 185 00:13:21,770 -- 00:13:23,250 when that's present. 186 00:13:26,000 -- 00:13:38,960 Some people will advise that you don't pursue the journey of evaluation based on their premise that the diagnosis won't make a difference anyway. 187 00:13:39,440 -- 00:13:42,810 And I've heard that from physicians, 188 00:13:42,810 -- 00:13:45,760 from psychologists. psychiatrists, teachers, 189 00:13:46,240 -- 00:13:46,770 um, 190 00:13:46,780 -- 00:13:49,930 all kinds of people. 191 00:13:49,930 -- 00:13:56,050 So I don't think it's really specific to any group of people or generation, 192 00:13:56,050 -- 00:14:11,160 but I think it's just a revelation that in our culture... in our communities... we're really not to the point where people understand what a difference it does make and what a difference it should make. 193 00:14:11,540 -- 00:14:15,350 So um if someone says that ... that probably, 194 00:14:15,740 -- 00:14:26,030 well I would say it does reveal that they don't understand the neurology of autism well enough that they can really comment on your situation. 195 00:14:26,040 -- 00:14:35,960 And again it may be your psychiatrist who doesn't or ... and it's not um a criticism of any one person. 196 00:14:36,040 -- 00:14:44,630 I'm just commenting I think on the state of our community as far as our awareness of what the neurology looks like, 197 00:14:44,630 -- 00:14:54,150 what impact it has on you or people around you and all the things that do make a difference about knowing that. 198 00:14:54,640 -- 00:14:59,080 Um So it should direct our expectations, 199 00:14:59,080 -- 00:14:59,860 our goals, 200 00:14:59,860 -- 00:15:03,100 our understanding of the why of behavioral patterns, 201 00:15:03,110 -- 00:15:05,020 how to get the best outcomes, 202 00:15:05,020 -- 00:15:06,600 how to support each other. 203 00:15:06,610 -- 00:15:16,310 Um because at a very basic level when you're going on a journey to um have an evaluation for autism, 204 00:15:16,310 -- 00:15:29,450 you're trying to figure out if your behavioral patterns in certain areas reflect neurology or whether they reflect more traditional mental health issues. 205 00:15:29,450 -- 00:15:39,460 And I know that those two categories are not clean cut categories but for the purpose of this basic discussion, 206 00:15:39,470 -- 00:15:44,340 I'm going to point out those 2 categories. 207 00:15:44,340 -- 00:15:55,380 So I'm going to give an analogy that I hope will demonstrate why it does make a difference to understand if parts of a behavioral pattern have a neurologic base. 208 00:15:55,390 -- 00:16:03,410 So let's consider that a psychologist has two clients coming in that day and they both have the same concern. 209 00:16:03,440 -- 00:16:08,830 They both have a memory concern, and the psychologist could think, 210 00:16:08,830 -- 00:16:11,040 "Well it's the same concern. 211 00:16:11,040 -- 00:16:22,460 So I'm just going to use the same treatment for both patients since we're really just wanting to improve memory regardless of the reason for the memory difficulty." 212 00:16:23,340 -- 00:16:23,980 Well, 213 00:16:23,990 -- 00:16:24,480 let's say, 214 00:16:24,480 -- 00:16:27,400 another psychologist has the same thing. 215 00:16:27,400 -- 00:16:29,920 They have to people coming in but they decide, 216 00:16:29,930 -- 00:16:30,470 you know, 217 00:16:30,480 -- 00:16:33,700 it really does matter what the reason is. 218 00:16:33,710 -- 00:16:39,640 And so I'm going to do an assessment to see -- why are these people having memory difficulties? 219 00:16:39,650 -- 00:16:42,010 And the first client of the day, 220 00:16:42,010 -- 00:16:50,570 the psychologist does the assessment and they see a cognitive pattern that's very classic for an alzheimer's dementia, 221 00:16:51,140 -- 00:16:54,390 which means that the hippocampus is not functioning well, 222 00:16:54,400 -- 00:16:56,670 there's a disease process here. 223 00:16:56,680 -- 00:17:03,650 It really looks like it's going to be degenerative, and the memory loss is very based in neurology. 224 00:17:05,340 -- 00:17:07,900 And the second client who comes in, 225 00:17:07,910 -- 00:17:22,860 the psychologist does the assessment and realizes after the evaluation that their memory loss is due to traumatic experiences... that they've had so much trauma in their life that they're dissociating, 226 00:17:23,140 -- 00:17:41,960 that they are shutting down their awareness in order to just go on autopilot and that's why they're losing chunks of their day and they forget parts of their childhood and their mind is just not online all of the time because it's trying to protect itself from all these strong emotions. 227 00:17:44,240 -- 00:18:03,720 So at a basic level the treatment needs to be different ... the conceptualization needs to be different, and the support that we offer people needs to be different - based on whether there's been this more mental health path to these symptoms or whether there is some neurologic base. 228 00:18:04,140 -- 00:18:17,040 So I'm not going to recommend that the Alzheimer's patient come into psychodynamic therapy every day to work on trauma work so that their memory will improve. 229 00:18:17,050 -- 00:18:21,970 I need to understand what the base of the concern is. 230 00:18:21,970 -- 00:18:25,160 So I understand what's likely to be helpful, 231 00:18:25,540 -- 00:18:31,620 but I very well may recommend that the second client engage in trauma work, 232 00:18:31,620 -- 00:18:32,860 whatever that looks like. 233 00:18:33,340 -- 00:18:48,390 Uh and that should help this pattern of dissociating and help her be more aware and present psychologically in the moment and cut down on that loss of memory. Now, 234 00:18:48,390 -- 00:18:51,240 certainly Alzheimer's and autism are not the same, 235 00:18:51,240 -- 00:18:51,710 right? 236 00:18:51,720 -- 00:18:57,160 Autism is developmental and Alzheimer's is acquired. 237 00:18:57,840 -- 00:19:00,080 Alzheimer's is degenerative, 238 00:19:00,090 -- 00:19:01,220 it gets worse. 239 00:19:01,230 -- 00:19:07,370 Um and autism is based on how the brain was wired during development. 240 00:19:07,370 -- 00:19:10,770 It's not a degenerative process, 241 00:19:11,640 -- 00:19:35,460 but you can see this general concept of figuring out if there's a part of something going on that's neurologic versus more traditional mental health issue, and so I feel ... I feel like that in itself can be a really important part of the journey toward figuring out if autism is present. 242 00:19:35,940 -- 00:19:41,840 So let me offer one additional example in this ... , 243 00:19:41,840 -- 00:20:04,170 I'm going to take little Johnny who's in kindergarten, and mother comes to talk with the teacher and gets to hear that "Unfortunately, Johnny is really struggling with his color recognition, and all of his peers are really taking off on recognizing colors and naming them and organizing them into hues and patterns. 244 00:20:04,170 -- 00:20:09,200 And boy, little Johnny is not up to speed in that area. 245 00:20:09,210 -- 00:20:15,720 And so what the teacher recommends is that she's going to repeat, for Johnny, 246 00:20:15,720 -- 00:20:24,760 why it's important to work hard to learn his colors because it does impact various parts of his life. 247 00:20:25,140 -- 00:20:29,990 So explaining ... a lot of explanation of why this is important. 248 00:20:30,000 -- 00:20:31,950 She's gonna ask Johnny if ... 249 00:20:31,960 -- 00:20:42,450 if he agrees that this is an important thing, and he says yes. And so she's going to add extra homework, extra tutoring about color recognition. 250 00:20:42,540 -- 00:20:54,290 She's going to ask the parents to give extra work and help him at home and maybe set up um a prize versus consequences kind of thing. 251 00:20:54,290 -- 00:20:59,370 Like if you can advance in this area up to your peers, 252 00:20:59,380 -- 00:21:01,600 you can get this extra present. 253 00:21:01,600 -- 00:21:08,060 But if you can't, then you can't go on the trip at the end of the year with your class. 254 00:21:08,740 -- 00:21:12,060 So they've set this whole thing up, and every year, 255 00:21:12,060 -- 00:21:13,590 the same thing is repeated. 256 00:21:13,590 -- 00:21:19,670 Boy, Johnny needs to work harder on his color recognition. By middle school, 257 00:21:19,670 -- 00:21:23,120 Johnny has this learned hopelessness... 258 00:21:23,120 -- 00:21:25,980 That no matter how hard he tries, 259 00:21:25,990 -- 00:21:30,890 he's always falling short of people's expectations in this area. 260 00:21:30,890 -- 00:21:36,260 And instead of being shamed and embarrassed about it anymore, 261 00:21:36,260 -- 00:21:37,330 he starts to say, 262 00:21:37,330 -- 00:21:38,110 "You know what? 263 00:21:38,120 -- 00:21:40,400 It's because I don't even care about colors, 264 00:21:40,480 -- 00:21:42,170 I don't care about this." 265 00:21:42,540 -- 00:21:50,720 And there starts to be this really difficult dynamic now between Johnny and his parents and his teachers, 266 00:21:50,730 -- 00:21:52,050 a lot of strain, 267 00:21:52,050 -- 00:21:56,290 some acting out. And all of a sudden, in middle school, 268 00:21:56,290 -- 00:22:02,030 someone thinks to see if Johnny is colorblind. Lo and behold, 269 00:22:02,040 -- 00:22:08,760 he has color blindness, and all this time we've been telling him to work harder. 270 00:22:10,440 -- 00:22:15,030 We've been lecturing him about why it's important to do better. 271 00:22:15,140 -- 00:22:18,060 We've been asking him if he agrees that it's important. 272 00:22:18,740 -- 00:22:19,240 Um, 273 00:22:19,240 -- 00:22:31,960 We've been tutoring him, all to no avail, and here we were asking him to do something he's not capable of doing at the same level as his peers. 274 00:22:32,540 -- 00:22:37,930 And that is a difficulty because we've really uh, 275 00:22:37,940 -- 00:22:39,870 set up this expectation. 276 00:22:39,870 -- 00:22:44,950 He has this learned hopelessness that he just can't meet people's expectations. 277 00:22:44,960 -- 00:23:01,570 The relationship between him and the teachers and the parents has become very strained and it could have been avoided if we understood that there's really a physical limitation that his eyes just can't process that information. 278 00:23:01,570 -- 00:23:07,190 So asking him to work harder is not going to be something that is helpful. 279 00:23:07,190 -- 00:23:09,350 It's not going to bring about a better outcome. 280 00:23:09,620 -- 00:23:11,800 In fact it's making things worse. 281 00:23:12,640 -- 00:23:18,700 So now let's say you have gone on this journey and you do have a diagnosis. 282 00:23:19,740 -- 00:23:23,360 Um One of the questions that people then ask is well, 283 00:23:25,140 -- 00:23:25,740 you know, 284 00:23:25,740 -- 00:23:29,150 I don't ... I don't know who I want to talk to about this. 285 00:23:29,150 -- 00:23:30,860 Do I have to tell everybody? 286 00:23:31,240 -- 00:23:40,670 Um In fact some people may say I don't even want to go on that journey toward evaluation ... because my partner wouldn't understand that diagnosis. 287 00:23:40,680 -- 00:23:48,190 And in reality... this is part of your medical record, 288 00:23:48,190 -- 00:23:59,370 part of your um diagnostic history that you do not have to share with people outside of your medical care. 289 00:23:59,370 -- 00:24:02,350 So if you have a partner, 290 00:24:02,740 -- 00:24:05,770 you do not have to reveal that to them. 291 00:24:06,340 -- 00:24:09,400 If you don't want to tell your family, 292 00:24:09,400 -- 00:24:12,100 if you don't want to tell your teachers, 293 00:24:12,110 -- 00:24:17,690 you have discretion about who you reveal too. 294 00:24:17,700 -- 00:24:23,560 And I am speaking to you about the interpersonal aspects of revealing. 295 00:24:24,040 -- 00:24:34,810 Um I'm not giving any legal or policy advice on anything about revealing in certain situations. 296 00:24:34,820 -- 00:24:36,990 But interpersonally, 297 00:24:37,000 -- 00:24:43,060 you don't have to reveal everything about yourself to every person in your life. 298 00:24:44,640 -- 00:24:52,460 There may be reasons that you may decide to discuss your diagnosis with someone or some group of people. 299 00:24:52,940 -- 00:25:07,260 And one of the reasons may be that you may want to explain who you are and how you're wired and what your needs are to other people and that may make life just easier with them. 300 00:25:08,280 -- 00:25:15,540 And you can make the explanation nonspecific or specific. 301 00:25:15,540 -- 00:25:20,390 And what I mean by that is you can use the word autism or not use the word autism, 302 00:25:20,940 -- 00:25:23,620 but in some instances you might want to say, 303 00:25:23,620 -- 00:25:23,920 you know, 304 00:25:23,920 -- 00:25:27,390 I've really learned that my system needs X, 305 00:25:27,390 -- 00:25:29,900 y and Z to feel calm. 306 00:25:29,900 -- 00:25:32,720 So I'm gonna go take a break now, 307 00:25:32,720 -- 00:25:34,060 if that's okay with you, 308 00:25:34,540 -- 00:25:36,660 or you might want to say, 309 00:25:36,670 -- 00:25:37,380 you know, 310 00:25:37,380 -- 00:25:41,770 I've learned that I kind of miss sometimes what my friends need. 311 00:25:41,770 -- 00:25:42,730 And so, 312 00:25:42,740 -- 00:25:43,250 you know, 313 00:25:43,250 -- 00:25:45,700 if you said something and it's just gone over my head, 314 00:25:45,700 -- 00:25:47,370 please tell me again, 315 00:25:47,370 -- 00:25:50,170 I really don't want to miss what your needs are. 316 00:25:50,540 -- 00:25:51,020 Um, 317 00:25:51,030 -- 00:25:58,070 so that's kind of a nonspecific way without using the word autism, 318 00:25:58,070 -- 00:26:05,760 that you can share what you've learned about yourself in that context and that could make your relationships, 319 00:26:06,340 -- 00:26:07,120 um, 320 00:26:07,130 -- 00:26:08,860 really run more smoothly. 321 00:26:10,640 -- 00:26:21,380 Another reason that someone may want to discuss their diagnosis may be that they might want to be someone that advocates for people on the spectrum, 322 00:26:21,380 -- 00:26:32,310 that they might want to be part of creating an atmosphere that normalizes discussions about autism and that supports autistic individuals. 323 00:26:32,320 -- 00:26:37,670 So they may decide that part of their own journey as personal to them, 324 00:26:38,540 -- 00:26:41,840 that that may be part of how they approach things, 325 00:26:41,840 -- 00:26:43,960 at least during a season of their life. 326 00:26:44,640 -- 00:26:45,160 Um, 327 00:26:45,160 -- 00:26:45,640 so, 328 00:26:45,640 -- 00:26:52,670 in an effort to create an atmosphere of discussion and inviting discussion and advocating, 329 00:26:53,040 -- 00:26:57,290 they may give this personal kind of, 330 00:26:57,300 -- 00:26:57,860 um, 331 00:26:58,240 -- 00:27:01,180 revelation to people about their own experience, 332 00:27:01,190 -- 00:27:02,480 what they've learned, 333 00:27:02,480 -- 00:27:05,560 how they can help support individuals on the spectrum. 334 00:27:07,440 -- 00:27:11,550 I had a situation come up like that in my own life, 335 00:27:12,340 -- 00:27:23,950 after my son had been diagnosed at the age of five at our local easter seals and I was at a Children's event and my son was out there, 336 00:27:23,960 -- 00:27:24,650 um, 337 00:27:24,660 -- 00:27:36,860 taking a certain kind of lesson in a group and another mother was sitting next to me and I had seen her son there a few times before and in watching his behavior 338 00:27:36,860 -- 00:27:38,770 I did think to myself, 339 00:27:38,780 -- 00:27:42,310 I wonder if his parents know he's on the spectrum. 340 00:27:42,310 -- 00:27:44,980 It was pretty clear to me, 341 00:27:45,540 -- 00:27:46,030 um, 342 00:27:46,030 -- 00:27:51,720 for a variety of reasons... and one day she just happened to be sitting next to me. 343 00:27:51,720 -- 00:27:56,290 We hadn't sat next to each other before and she, 344 00:27:56,300 -- 00:27:58,450 I actually just said to her, 345 00:27:58,450 -- 00:27:58,830 how, 346 00:27:58,840 -- 00:28:01,060 how's your son enjoying this? 347 00:28:01,540 -- 00:28:07,720 I asked about how he likes school and my intention was not to bring up the, 348 00:28:07,730 -- 00:28:09,350 the diagnostic issue. 349 00:28:09,360 -- 00:28:11,700 My intention was just to be polite. 350 00:28:11,710 -- 00:28:13,880 So how does your son like school? 351 00:28:13,880 -- 00:28:14,980 What is he like best? 352 00:28:14,980 -- 00:28:16,080 How you know? 353 00:28:16,090 -- 00:28:16,880 Um, 354 00:28:16,890 -- 00:28:18,930 and in that process, 355 00:28:18,930 -- 00:28:19,650 she said, 356 00:28:19,660 -- 00:28:20,060 oh, 357 00:28:20,060 -- 00:28:21,550 he's doing really well, 358 00:28:21,640 -- 00:28:24,340 he's a little behind with some social things, 359 00:28:24,340 -- 00:28:26,970 but I'm sure that will mature quickly. 360 00:28:27,540 -- 00:28:28,010 Um, 361 00:28:28,010 -- 00:28:31,470 and then she said a really, 362 00:28:31,480 -- 00:28:37,890 there was a really pivotal moment for me and I was caught off guard and she said, 363 00:28:38,440 -- 00:28:39,160 actually, 364 00:28:39,160 -- 00:28:45,260 his teachers had the gall to suggest he's on the autism spectrum. 365 00:28:46,340 -- 00:28:54,110 And I had that kind of moment where you feel like everything sits still and things are moving in slow motion. 366 00:28:54,110 -- 00:28:54,740 But you know, 367 00:28:54,740 -- 00:28:56,670 you have to respond or, 368 00:28:56,680 -- 00:28:59,360 or your mind is trying to think of something to say. 369 00:29:00,740 -- 00:29:02,930 And I thought to myself, 370 00:29:02,940 -- 00:29:14,860 I know I don't have to talk about our experience with her, and I'm not feeling very generous in this moment, 371 00:29:15,440 -- 00:29:17,300 but I said, 372 00:29:17,300 -- 00:29:17,610 you know, 373 00:29:17,610 -- 00:29:19,280 if I don't say anything, 374 00:29:20,430 -- 00:29:25,350 I feel like I'm going to be agreeing that this is not something we can talk about. 375 00:29:26,340 -- 00:29:29,440 And that's not what I believe and that's not the atmosphere 376 00:29:29,440 -- 00:29:35,280 I want to create ... that if I don't reveal our experience, 377 00:29:36,140 -- 00:29:40,760 I am agreeing that it takes gall to suggest that. 378 00:29:41,940 -- 00:29:44,160 And I also didn't want to shame her. 379 00:29:44,740 -- 00:29:47,430 I know what it's like to be a struggling mom. 380 00:29:48,140 -- 00:29:48,770 I don't, 381 00:29:49,540 -- 00:29:50,110 I'm not, 382 00:29:50,120 -- 00:29:52,990 I wasn't in the same place that she is, 383 00:29:53,540 -- 00:29:57,100 but I did not want to wound her or shame her. 384 00:29:57,330 -- 00:30:03,060 And so I ended up saying in a very matter of fact tone, 385 00:30:03,070 -- 00:30:03,390 "Oh, 386 00:30:03,390 -- 00:30:05,120 my son's on the spectrum. 387 00:30:05,130 -- 00:30:08,580 We got diagnosed at easter seals and you know, 388 00:30:08,580 -- 00:30:10,670 that was one of the best things we ever did. 389 00:30:10,680 -- 00:30:14,650 His therapies were so helpful and you know, 390 00:30:14,650 -- 00:30:17,800 that was really something that was good for us." 391 00:30:19,040 -- 00:30:21,120 And then I just said to her, 392 00:30:21,130 -- 00:30:21,640 "You know, 393 00:30:21,640 -- 00:30:26,910 whatever your son needs to be doing well and uh, 394 00:30:26,920 -- 00:30:28,660 feeling good and connecting with people, 395 00:30:28,660 -- 00:30:31,060 I just hope he gets that ... whatever that is." 396 00:30:33,540 -- 00:30:39,960 So sometimes we make decisions about revelation based on what kind of atmosphere we want to promote. 397 00:30:43,690 -- 00:30:49,760 Sometimes we might want to discuss our diagnosis to formalize something in a record, 398 00:30:50,140 -- 00:30:58,650 like a medical record or a school or work record where we're asking for specific accommodations or we're asking, 399 00:30:58,660 -- 00:30:59,350 um, 400 00:30:59,740 -- 00:31:00,530 for, 401 00:31:00,540 -- 00:31:01,390 uh, 402 00:31:01,400 -- 00:31:03,000 an intervention like, 403 00:31:03,010 -- 00:31:03,580 um, 404 00:31:03,590 -- 00:31:08,250 occupational therapy or something that's going to be directed towards that need. 405 00:31:08,250 -- 00:31:10,420 So sometimes we'll um, 406 00:31:10,430 -- 00:31:17,170 discuss that with a team of people working on giving us specific interventions or accommodations. 407 00:31:19,140 -- 00:31:23,410 And we also may wish to help someone specific. 408 00:31:23,420 -- 00:31:25,470 So maybe we've, 409 00:31:25,480 -- 00:31:26,070 you know, 410 00:31:26,080 -- 00:31:29,990 we've revealed the diagnosis to some people close to us, 411 00:31:29,990 -- 00:31:38,270 but most people don't know, and you run across someone that's really struggling, and you really think you get it. 412 00:31:38,340 -- 00:31:39,020 You know, 413 00:31:39,030 -- 00:31:47,170 you think I know what that is and I was so helped by this that maybe my experience might help them. 414 00:31:47,540 -- 00:31:57,850 So you may choose in that moment or with that person to kind of talk about your own experience of diagnosis and why that made a difference for you. 415 00:31:57,850 -- 00:32:00,800 And you might say something like, 416 00:32:00,810 -- 00:32:01,220 you know, 417 00:32:01,220 -- 00:32:03,330 "I don't know if that's anything you've considered, 418 00:32:03,330 -- 00:32:05,160 but it may be something to think about." 419 00:32:08,140 -- 00:32:17,360 And the last reason I'm going to put out there is just that sometimes when you are in an increasingly close relationship, 420 00:32:17,370 -- 00:32:20,450 whether it's a friendship or um, 421 00:32:20,460 -- 00:32:22,040 a partnership, 422 00:32:22,050 -- 00:32:23,560 a romantic partnership, 423 00:32:24,540 -- 00:32:26,100 part of growing closer, 424 00:32:26,100 -- 00:32:27,180 over time, 425 00:32:28,140 -- 00:32:28,670 you know, 426 00:32:28,670 -- 00:32:31,400 maybe you've connected over favorite interests, 427 00:32:31,400 -- 00:32:33,470 maybe you've connected in a group, 428 00:32:33,480 -- 00:32:39,260 maybe it's been a year and you're getting closer and (the time frame isn't important, 429 00:32:39,260 -- 00:32:53,170 I'm just trying to emphasize that there's been this growth together) ... And part of encouraging even more intimacy and closeness is self revelation. 430 00:32:53,640 -- 00:33:03,440 So you start to reveal over time things that have really impacted you or things that you've been through and what your journey has been like. 431 00:33:03,450 -- 00:33:09,350 So someone might share with their increasingly close friend what it was like when their mom died. 432 00:33:09,840 -- 00:33:15,060 Or someone might share their diagnostic journey towards an autism diagnosis. 433 00:33:15,440 -- 00:33:23,280 So sometimes it's part of this growing intimacy that self revelation brings whatever that revelation is. 434 00:33:23,290 -- 00:33:27,770 And in this case it could have to do with the diagnosis of autism. 435 00:33:30,140 -- 00:33:34,760 Those are my scattered thoughts um, 436 00:33:34,770 -- 00:33:42,800 about talking about a journey toward diagnosis or an existing diagnosis with other people. 437 00:33:42,810 -- 00:33:48,300 And I hope that these have provided some food for thought. 438 00:33:48,310 -- 00:33:48,930 Um, 439 00:33:48,930 -- 00:34:07,440 some examples of things that you might say or might avoid or might consider. The next episode is going to focus on bringing up the conversation or the topic with people that you think may be on the spectrum that you'd like to help, 440 00:34:07,450 -- 00:34:10,520 but they really don't see this coming. 441 00:34:10,530 -- 00:34:12,660 You don't ... you're not sure how they're gonna react, 442 00:34:12,660 -- 00:34:13,850 You don't know what to say. 443 00:34:14,240 -- 00:34:19,260 So that will be this next episode and the final episode, 444 00:34:19,270 -- 00:34:25,260 I envision being about dealing with strong emotions um, 445 00:34:25,270 -- 00:34:28,280 in conversation about autism. 446 00:34:28,280 -- 00:34:34,110 So one of the things I've really experienced and learned is that people have strong, 447 00:34:34,110 -- 00:34:39,540 strong emotions for a variety of very legitimate reasons. 448 00:34:39,550 -- 00:34:42,310 And sometimes dealing with the emotions 449 00:34:42,310 -- 00:34:48,550 in the conversation can be even more difficult than figuring out the words to say. 450 00:34:48,940 -- 00:34:49,560 Um, 451 00:34:49,560 -- 00:34:54,410 and sometimes you never know what kind of emotion is going to come on the scene. 452 00:34:54,420 -- 00:34:55,260 Um, 453 00:34:55,270 -- 00:35:03,890 and so I'm going to kind of focus on this emotional exchange during the third episode of this series, 454 00:35:03,890 -- 00:35:05,860 Talking About Autism.

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“What did the council decide on item 42?” — answered with the speaker and the moment.

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