Join Dr. Regan for the first in a series on autism misdiagnosis. This episode focuses on why autism is misdiagnosed and how we can do better. 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 below: 1 00:00:01,890 -- 00:00:04,590 Hello and welcome to autism. 2 00:00:04,590 -- 00:00:06,170 In the adult podcast. 3 00:00:06,180 -- 00:00:07,450 I am your host, 4 00:00:07,450 -- 00:00:08,890 Dr Theresa Regan. 5 00:00:08,900 -- 00:00:10,830 I'm a neuropsychologist. 6 00:00:10,840 -- 00:00:19,210 The director of an adult diagnostic autism clinic in central Illinois and the parent of an autistic teen. 7 00:00:19,220 -- 00:00:27,060 I am going to be starting a new series today and that's going to focus on misdiagnosis... 8 00:00:27,060 -- 00:00:27,360 So... 9 00:00:27,360 -- 00:00:35,630 people who are on the autism spectrum, who have that autistic neurology, but are diagnosed with something else... 10 00:00:35,640 -- 00:00:42,180 typically a mental health diagnosis and oftentimes several diagnoses. 11 00:00:42,950 -- 00:00:50,480 We're going to talk about why that happens and how to understand how we can do better. 12 00:00:51,620 -- 00:00:53,560 As we're starting off, 13 00:00:53,570 -- 00:01:02,030 I am going to tell you a story and the story is called The Parable of the Elephant. 14 00:01:02,040 -- 00:01:04,890 And this is a very ancient parable. 15 00:01:04,900 -- 00:01:08,320 It has a few variations across cultures. 16 00:01:08,330 -- 00:01:09,370 But it really, 17 00:01:09,370 -- 00:01:15,260 I think. speaks to this dilemma that we have about misdiagnosis. 18 00:01:16,520 -- 00:01:23,610 There was an ancient village and they had never seen an elephant before. 19 00:01:23,620 -- 00:01:30,450 And you can imagine that when someone brought an elephant into their village it was a big deal. 20 00:01:30,460 -- 00:01:36,070 People wanted to know "what does a creature called an elephant look like?" 21 00:01:36,540 -- 00:01:46,990 And there was also this group of villagers there who were blind and they thought well we aren't going to be able to see the elephant, 22 00:01:46,990 -- 00:01:56,670 but we could put out our hands and we could perceive the elephant through touch and this will let us know what the elephant is like. 23 00:01:58,350 -- 00:02:02,660 So indeed the villagers went to the center of town. 24 00:02:02,670 -- 00:02:06,250 They stood around this creature called an elephant. 25 00:02:06,260 -- 00:02:12,830 In each person put out their hand and they were able to experience the elephant. 26 00:02:14,020 -- 00:02:17,690 So what happened is that the first person said, 27 00:02:17,700 -- 00:02:19,650 oh I get it. 28 00:02:19,660 -- 00:02:22,470 An elephant is like a fan, 29 00:02:22,480 -- 00:02:28,900 I've put out my hand and I can feel that it's broad and wavy and thin. 30 00:02:28,910 -- 00:02:31,150 An elephant is like a fan. 31 00:02:32,000 -- 00:02:37,980 And here the person had felt the ear of the elephant. 32 00:02:37,990 -- 00:02:40,510 Well the next person said, 33 00:02:40,520 -- 00:02:52,780 I do not know what you're talking about because I am right here feeling the elephant and I can tell you that the elephant is broad and tall and wide. 34 00:02:52,790 -- 00:02:55,130 I can't even put my arms out, 35 00:02:55,130 -- 00:03:00,660 but I can just say that that an elephant is like a wall, 36 00:03:00,670 -- 00:03:04,400 it's so big and massive and strong. 37 00:03:05,390 -- 00:03:07,820 The next person disagreed as well, 38 00:03:08,750 -- 00:03:10,290 this person said no, 39 00:03:10,290 -- 00:03:10,480 no, 40 00:03:10,480 -- 00:03:11,150 no, 41 00:03:11,160 -- 00:03:14,660 it's... I can put my arms around it, 42 00:03:14,670 -- 00:03:24,490 it's thick and tall but there is an end to it and and it's kind of like a tree trunk or a pillar. 43 00:03:24,500 -- 00:03:30,010 And this person was experiencing the leg ... touching the leg of the elephant. 44 00:03:30,410 -- 00:03:32,740 The next person was at the tail. 45 00:03:32,750 -- 00:03:34,100 They said no, 46 00:03:34,100 -- 00:03:34,890 no, 47 00:03:34,900 -- 00:03:36,850 not like that at all. 48 00:03:36,860 -- 00:03:38,400 This is thin, 49 00:03:38,410 -- 00:03:41,370 it's really... an elephant is like a rope, 50 00:03:41,380 -- 00:03:44,200 it's corded and thin and long. 51 00:03:44,210 -- 00:03:46,900 No said the next person, 52 00:03:47,220 -- 00:03:58,960 the elephant is like a snake and they were there at the trunk and they said it's thick and curvy and I can just feel all the textures of the skin, 53 00:03:58,960 -- 00:04:01,670 it's really like a snake, 54 00:04:01,680 -- 00:04:03,820 that's what an elephant is like. 55 00:04:03,830 -- 00:04:08,290 And the last person was feeling the tusk and said, 56 00:04:08,290 -- 00:04:08,610 no, 57 00:04:08,610 -- 00:04:10,440 not like a snake at all. 58 00:04:10,450 -- 00:04:12,220 It's curved a bit, 59 00:04:12,220 -- 00:04:22,020 but it's really hard and ah strong and smooth, and I would say an elephant is like a sword or a spear. 60 00:04:24,250 -- 00:04:30,670 So the parable is meant to teach that here, 61 00:04:30,680 -- 00:04:35,080 every person was correct about what was right in front of them, 62 00:04:35,640 -- 00:04:48,340 but they were all incorrect because they were only experiencing a piece of what an elephant is and an elephant is not like a snake or a rope or a wall. 63 00:04:48,400 -- 00:04:58,730 It's really many things put together in that description and an elephant is a whole creature with many of those features. 64 00:04:58,740 -- 00:05:06,480 So that is the lesson and it applies really well to this process of diagnosis regarding autism. 65 00:05:07,250 -- 00:05:07,570 So, 66 00:05:07,570 -- 00:05:13,530 what happens in the area of diagnosis is that a client or patient will present, 67 00:05:13,540 -- 00:05:18,800 they'll have concerns and some characteristics that maybe they're struggling with. 68 00:05:18,810 -- 00:05:24,670 And the clinician will see that one little piece and label it with a diagnosis, 69 00:05:24,680 -- 00:05:28,360 but they won't see the big picture diagnosis, 70 00:05:28,370 -- 00:05:29,810 which is autism. 71 00:05:30,640 -- 00:05:30,950 So, 72 00:05:30,950 -- 00:05:35,600 let me step away from the animal analogy for a moment, 73 00:05:35,600 -- 00:05:41,130 but we're going to go back and kind of weave this image through to make some other points. 74 00:05:41,140 -- 00:05:48,130 One point I want to make is that we define diagnoses based on certain criteria. 75 00:05:48,140 -- 00:05:55,320 So these are pieces of the condition or the diagnosis. 76 00:05:55,330 -- 00:05:55,890 So, 77 00:05:55,890 -- 00:05:58,920 depression has a list of criteria. 78 00:05:58,920 -- 00:06:00,290 Things that we look for. 79 00:06:00,290 -- 00:06:04,590 Do you have these features? and then we diagnose depression. 80 00:06:04,600 -- 00:06:07,650 Alzheimer's has a list of criteria, 81 00:06:07,660 -- 00:06:09,820 bipolar has a list of criteria, 82 00:06:09,830 -- 00:06:12,140 autism has a list of criteria. 83 00:06:12,150 -- 00:06:23,700 Now the reason for having criteria is to make certain that we're talking about the same thing and also to help us research this diagnosis. 84 00:06:23,700 -- 00:06:25,810 We really want to know more about it. 85 00:06:25,820 -- 00:06:27,530 We want to help people, 86 00:06:27,530 -- 00:06:35,330 we want to understand what kinds of things are not helpful and we want to know the prognosis. 87 00:06:36,310 -- 00:06:39,900 So we have to agree on some language for it. 88 00:06:39,900 -- 00:06:41,350 And some criteria. 89 00:06:42,280 -- 00:06:44,020 When will we call something 90 00:06:44,020 -- 00:06:48,730 Alzheimer's? When will we call something bipolar instead of something else? 91 00:06:51,140 -- 00:06:53,510 In the example of the parable of the elephant, 92 00:06:53,520 -- 00:07:00,810 each person who encountered the elephant described a small element of one large thing. 93 00:07:00,820 -- 00:07:05,290 They defined it on the basis of one piece rather than the whole. 94 00:07:05,300 -- 00:07:11,330 So in this case it was like creating criteria for an elephant ear. 95 00:07:11,710 -- 00:07:21,430 And then calling the ear the elephant... an elephant is like a fan because I've experienced this piece, 96 00:07:21,440 -- 00:07:26,250 this ear. or a criteria for the tusk, 97 00:07:26,260 -- 00:07:29,800 and saying that an elephant is something with the tusk. 98 00:07:29,810 -- 00:07:38,880 Instead of realizing that a tusk is a little piece of an elephant that does not define the elephant. 99 00:07:38,880 -- 00:07:50,960 So you get the picture that there is a problem with defining such a large creature based on one feature or one experience with ... 100 00:07:50,970 -- 00:07:58,710 with the characteristic. So related to diagnoses ... autism like the elephant ... the big picture. 101 00:07:58,720 -- 00:08:08,110 It's the diagnosis with seven diagnostic criteria and each of the criteria could be diagnosed separately as something else. 102 00:08:08,700 -- 00:08:20,220 So if the tribe of people were encountering our concept of autism and they had never come across autism before and one individual encountered the social criteria, 103 00:08:20,240 -- 00:08:22,650 they might diagnose social anxiety. 104 00:08:22,660 -- 00:08:24,010 Well that's what autism is ... 105 00:08:24,010 -- 00:08:25,040 social anxiety, 106 00:08:25,040 -- 00:08:28,080 let's just call this social anxiety. 107 00:08:28,250 -- 00:08:35,920 Another person could encounter autism and say actually... really autism is a difficulty with flexibility, 108 00:08:35,930 -- 00:08:37,770 difficulty with change. 109 00:08:37,780 -- 00:08:41,910 The person wanting to repeat things... for things to be predictable, 110 00:08:41,910 -- 00:08:44,150 perhaps having rituals for the day. 111 00:08:44,730 -- 00:08:46,510 So let's call this OCD. 114 00:08:48,680 -- 00:08:53,680 They're looking at this one piece of the larger autistic picture. 115 00:08:54,540 -- 00:09:01,490 Another individual may encounter the executive function difficulty that an individual on the spectrum has. 116 00:09:01,500 -- 00:09:02,960 And they may say, 117 00:09:02,960 -- 00:09:06,540 well look this is executive function difficulty. 118 00:09:06,540 -- 00:09:07,670 I know what this is. 119 00:09:07,680 -- 00:09:08,320 It's ADD. 122 00:09:10,550 -- 00:09:23,300 Another person may encounter problems that the individual presents with ... emotional regulation, with sleep, and sometimes a really encompassing obsessive interest in an activity. 123 00:09:23,310 -- 00:09:33,580 And they might say wow it looks like this person is kind of manic and emotionally labile and... and I think this is actually bipolar disorder. 124 00:09:33,590 -- 00:09:36,690 That's what this creature is. 125 00:09:36,690 -- 00:09:39,710 That's what this autistic experiences. 126 00:09:43,190 -- 00:09:53,060 So it's akin to having the tribe's person encounter the ear of the elephant and labeling this as a fan or the tail and labeling it as a rope. 127 00:09:53,070 -- 00:10:24,090 In this case a clinician might encounter autism but not be familiar with it and not see the big picture and then label a piece of autism as if that were the whole. The way that we ensure that as clinicians we're seeing the big picture instead of just one piece of something is to make sure we're really doing a thorough differential diagnostic process. 128 00:10:24,100 -- 00:10:33,040 A differential is a list of diagnoses to consider that could be present based on the few things that we first encounter. 129 00:10:33,050 -- 00:10:35,490 So let's take the animal example. 130 00:10:35,490 -- 00:10:36,050 Again, 131 00:10:36,240 -- 00:10:41,100 if we encounter a huge, gray, lumbering animal with eyes, 132 00:10:41,110 -- 00:10:41,720 ears, 133 00:10:41,720 -- 00:10:43,390 four legs and a tail, 134 00:10:43,400 -- 00:10:44,420 someone may say, 135 00:10:44,420 -- 00:10:48,020 well that's all the criteria for a rhinoceros. 136 00:10:48,770 -- 00:10:52,660 So I think this animal is a rhinoceros. 137 00:10:54,200 -- 00:11:02,640 But the person who understands the importance of differentials will say... other animals also have these features. 138 00:11:02,640 -- 00:11:05,250 You're right ... a rhinoceros does. 139 00:11:05,260 -- 00:11:07,100 But you know, 140 00:11:07,110 -- 00:11:13,000 there are also things to consider such as an elephant or a hippo. 141 00:11:13,010 -- 00:11:15,800 So based on what we know, 142 00:11:15,800 -- 00:11:19,140 we can't quite conclude that this is a rhinoceros, 143 00:11:19,150 -- 00:11:21,670 we have to do a little more detective work. 144 00:11:23,960 -- 00:11:28,640 The differential then is rhinoceros, elephant, hippo. 145 00:11:28,650 -- 00:11:35,360 That's the list of considerations in our consideration of diagnosis. 146 00:11:35,370 -- 00:11:38,330 A person may struggle with executive function. 147 00:11:38,340 -- 00:11:39,290 Yes, ADD 150 00:11:39,670 -- 00:11:41,300 Could be diagnosed. 151 00:11:41,310 -- 00:11:47,300 But after all... there is executive function difficulty in other conditions as well. 152 00:11:47,310 -- 00:11:47,920 ADD 155 00:11:48,310 -- 00:11:49,370 Is one. 156 00:11:49,920 -- 00:11:50,520 However, 157 00:11:50,520 -- 00:11:56,730 every autistic individual will also have some pattern of executive function difficulty, 158 00:11:57,430 -- 00:12:05,760 we would also want to know... has this person had any recent injury or illness, because this can also cause executive function difficulty. 159 00:12:05,770 -- 00:12:08,110 And how old is this person? 160 00:12:08,110 -- 00:12:09,970 What characteristics do they have? 161 00:12:09,980 -- 00:12:13,990 Is this someone who's showing some early signs of dementia? 162 00:12:14,270 -- 00:12:16,070 Also have there been an MRI or any other neurologic features? 166 00:12:18,580 -- 00:12:20,590 Perhaps this is part of a demyelinating process like multiple sclerosis. 169 00:12:23,810 -- 00:12:29,510 So that could be the differential ... rather than seeing executive function problems, 170 00:12:29,520 -- 00:12:31,110 noting that that's what ADD 173 00:12:31,530 -- 00:12:32,780 Is and calling it ADD 176 00:12:33,480 -- 00:12:45,610 We can invite more complexity in and realize that we really need to have a detailed analysis to get to that big picture... that just right description of what the big picture is. 177 00:12:48,860 -- 00:13:00,710 The clinician using the process of differential diagnosis is differentiating autism from other states with similar features. 178 00:13:02,190 -- 00:13:04,650 Although it's true that a rhino is large, 179 00:13:04,650 -- 00:13:05,710 has four legs, 180 00:13:05,720 -- 00:13:06,290 ears, 181 00:13:06,290 -- 00:13:07,160 reproduces, 182 00:13:07,170 -- 00:13:08,300 eats and urinates. 183 00:13:08,330 -- 00:13:18,100 We can't define the creature based on that description without differentiating it from other animals with the same features such as hippos or elephants. 184 00:13:18,150 -- 00:13:25,170 Now it's not that we would mistake a hippo for an elephant if we really could see the big picture. 185 00:13:25,460 -- 00:13:29,530 But if we're only presented with little clues at the beginning, 186 00:13:29,540 -- 00:13:34,740 we know that there are distinct creatures that may have similar elements. 187 00:13:34,780 -- 00:13:42,370 Not that the creatures are so similar that they can't be distinguished when we see the whole big picture, 188 00:13:42,380 -- 00:13:47,820 but that if we're only seeing a few elements present at a time, 189 00:13:47,830 -- 00:13:50,810 we need to know what kind of detective work to do. 190 00:13:51,790 -- 00:13:53,190 For example, 191 00:13:53,200 -- 00:13:56,540 how fast does this animal run? 192 00:13:56,560 -- 00:14:05,020 A Rhino runs faster than an elephant or a hippo at about 34 mph or 55 km/h. 193 00:14:06,220 -- 00:14:09,040 All three are found on the african continent, 194 00:14:09,040 -- 00:14:13,760 but hippos gravitate toward environments with aquatic elements nearby. 195 00:14:13,990 -- 00:14:14,580 Now, 196 00:14:14,580 -- 00:14:18,060 both rhinos and elephants have horns or tusks. 197 00:14:18,070 -- 00:14:18,930 However, 198 00:14:18,930 -- 00:14:22,650 the material in the horn of a rhino is more like our fingernails, 199 00:14:22,660 -- 00:14:27,100 while the tusk of the elephant is made of material closer to our teeth, 200 00:14:27,130 -- 00:14:32,830 Of course an elephant has that distinctive trunk not found in the other creatures. 201 00:14:33,990 -- 00:14:37,720 So this process is the differential process. 202 00:14:37,730 -- 00:14:40,180 If we're only seeing a few elements. 203 00:14:40,180 -- 00:14:51,480 At first we do detective work and we say what other creatures or diagnoses have these same features. 204 00:14:53,000 -- 00:14:57,790 We're aware that certain elements are present that occur in one category, 205 00:14:57,790 -- 00:15:00,020 whether that's a species or a diagnosis, 206 00:15:00,020 -- 00:15:08,660 but we realize that this needs to be tested to differentiate it between other categories with those features as well. 207 00:15:08,670 -- 00:15:12,640 So the differential process for diagnosis should be similar. 208 00:15:12,650 -- 00:15:13,440 For example, 209 00:15:13,450 -- 00:15:17,200 if an individual presents with emotional regulation difficulty, 210 00:15:17,380 -- 00:15:21,710 let's say in this case that looks like mood swings or anger outbursts, 211 00:15:21,720 -- 00:15:28,600 although in others it could look much quieter like dissociation or fleeing, 213 00:15:28,920 -- 00:15:30,030 withdrawing. 214 00:15:30,630 -- 00:15:31,640 But in this case, 215 00:15:31,650 -- 00:15:34,080 if there's mood swings or anger outbursts, 216 00:15:34,090 -- 00:15:43,160 a clinician might diagnose bipolar and maybe even show the person that all the criteria for bipolar are present. 217 00:15:44,000 -- 00:15:45,020 However, 218 00:15:45,030 -- 00:15:49,130 no one has checked whether there's social reciprocity, 219 00:15:49,130 -- 00:15:52,500 difficulty or sensory processing characteristics, 220 00:15:52,510 -- 00:15:54,430 stereotyped movements. 221 00:15:54,550 -- 00:15:55,890 In other words, 222 00:15:55,890 -- 00:16:03,100 nobody has done detective work to see if a different big picture is actually present in this case, 223 00:16:03,100 -- 00:16:05,510 the big picture being autism. 224 00:16:07,750 -- 00:16:13,130 Another individual may present with difficulty understanding "who am I? 225 00:16:13,130 -- 00:16:16,360 I just don't have the stable sense of who I am, 226 00:16:16,370 -- 00:16:19,910 I can't reach my internal state, 227 00:16:19,920 -- 00:16:22,120 what's going on inside of me?" 228 00:16:22,860 -- 00:16:26,960 They also have difficulty keeping an even keeled mood. 229 00:16:26,970 -- 00:16:36,800 They struggle to start and maintain and understand relationships well. A person may present with these features and the clinician will say, 230 00:16:36,800 -- 00:16:37,330 look, 231 00:16:37,340 -- 00:16:41,880 all the criteria for borderline personality disorder have been met. 232 00:16:43,800 -- 00:16:45,190 That may be true. 233 00:16:45,200 -- 00:16:46,220 However, 234 00:16:46,230 -- 00:16:49,690 even though all the criteria for one condition may be met, 235 00:16:49,700 -- 00:17:01,860 the diagnostic manual stresses that you make that diagnosis only if the characteristics are not better explained by a different diagnosis, 236 00:17:02,750 -- 00:17:05,670 it's not that the features aren't present. 237 00:17:05,680 -- 00:17:13,900 It's whether the big picture of features is explained best by that diagnosis or by a different one. 238 00:17:13,910 -- 00:17:15,990 If these features are present, 239 00:17:15,990 -- 00:17:19,110 but there are also stereotype verbalization, 240 00:17:19,120 -- 00:17:20,560 ritualistic behaviors, 241 00:17:20,560 -- 00:17:23,220 difficulty processing social information, 242 00:17:23,230 -- 00:17:26,050 all of which have been present in childhood, 243 00:17:26,060 -- 00:17:29,690 then the better big picture diagnosis is autism. 244 00:17:31,960 -- 00:17:43,030 So the crux of the problem is this autism is rarely, rarely, rarely included in a clinician's differential process. 245 00:17:44,170 -- 00:17:46,250 This is improving somewhat. 246 00:17:46,260 -- 00:17:51,870 But most patients I see who have been misdiagnosed carry often multiple diagnoses, 247 00:17:51,880 -- 00:17:55,110 all of which reflect core autistic characteristics. 248 00:17:55,120 -- 00:17:57,550 It maybe schizophrenia, 249 00:17:57,560 -- 00:18:00,720 maybe borderline personality, eating disorder, 250 00:18:00,720 -- 00:18:01,750 social anxiety, 251 00:18:01,750 -- 00:18:01,850 OCD 254 00:18:03,230 -- 00:18:10,500 But really the suspicion should be that all of these together maybe describing the big picture diagnosis of autism. 255 00:18:10,510 -- 00:18:13,890 But autism has never been considered. 256 00:18:13,950 -- 00:18:19,650 It's not been ruled out and the better diagnosis assigned. 257 00:18:19,660 -- 00:18:22,570 No it's just never been considered. 258 00:18:23,730 -- 00:18:32,580 Someone has seen the characteristics they are familiar with and they have not met this creature called autism. 259 00:18:32,960 -- 00:18:38,400 So they assign diagnoses to the parts based on what they're familiar with. 260 00:18:38,410 -- 00:18:42,430 Not realizing that autism can also present similarly. 261 00:18:42,430 -- 00:18:43,960 But for different reasons. 262 00:18:43,970 -- 00:18:53,890 And of course that the big picture of autism is different than the pieces that they've labeled schizophrenic, OCD... 265 00:18:54,930 -- 00:18:56,990 Just as in the case of animals, 266 00:18:56,990 -- 00:19:00,330 it's not that bipolar and autism are so similar. 267 00:19:00,330 -- 00:19:02,010 We just can't tell the difference. 268 00:19:02,020 -- 00:19:06,840 Well no, we can tell that an elephant is not a hippo. 269 00:19:06,840 -- 00:19:28,610 If we see the whole creature... it's just that if we're presented with pieces on an initial visit and we don't know how to see the big picture and we've never encountered an elephant, or in this case autism... then we look at what we see and what we know and we label that instead. 270 00:19:28,610 -- 00:19:46,200 And that's how we get into this problematic situation of misdiagnoses... the person hasn't considered or ruled out autism, and therefore we have this collection of piecemeal diagnoses that really don't capture the accurate neurologic picture. 271 00:19:46,640 -- 00:19:53,580 I'm not going to get into the nitty gritty of when autism and another diagnosis should be made together. 272 00:19:53,590 -- 00:19:56,950 There are rules and guidelines for that as clinicians, 273 00:19:56,960 -- 00:20:02,870 but there are situations where you will have more than one diagnosis. 274 00:20:02,870 -- 00:20:06,290 So let's say autism and bipolar, 275 00:20:07,340 -- 00:20:16,810 essentially a second diagnosis would be made if there's a constellation of characteristics that are not entirely accounted for by autism. 276 00:20:16,820 -- 00:20:18,230 So for example, 277 00:20:18,230 -- 00:20:22,410 in over 500 patients that I've diagnosed, 278 00:20:22,420 -- 00:20:38,870 I believe I've made an additional diagnosis of bipolar twice because I did not feel the sleep disturbance and emotional regulation difficulty and other features were explained entirely by autism. 279 00:20:39,460 -- 00:20:40,340 Likewise, 280 00:20:40,340 -- 00:20:43,560 I believe I also made a diagnosis of OCD 283 00:20:44,610 -- 00:20:45,560 At least once, 284 00:20:45,560 -- 00:20:46,680 perhaps twice. 285 00:20:46,690 -- 00:20:50,430 And borderline essentially the same... once or twice. 286 00:20:51,160 -- 00:20:52,120 In addition, 287 00:20:52,130 -- 00:21:00,340 a second diagnosis may be appropriate if ... even though the characteristics are rooted in autism ... 288 00:21:00,350 -- 00:21:12,950 if this second thing becomes an area of such concern for the person's well being and health that we really need to go after intervention specifically for this thing. 289 00:21:12,960 -- 00:21:14,920 For example, 290 00:21:15,270 -- 00:21:24,000 even though many individuals on the spectrum have differences in their eating profiles that can lead to restricted eating, 291 00:21:24,490 -- 00:21:38,440 ... actually eating disorder should still be diagnosed if this really gets to the point where medical problems and health difficulties are stemming from really extreme nutritional deficits. 292 00:21:38,440 -- 00:21:43,380 So even though we know it's not separate from autism neurology, 293 00:21:43,390 -- 00:21:50,560 it still has become an area of significant and distinct concern that needs its own intervention. 294 00:21:51,260 -- 00:21:51,820 However, 295 00:21:51,820 -- 00:21:56,160 the intervention should be made in light of the neurologic base. 296 00:21:58,940 -- 00:22:02,990 Similarly for depression or PTSD. 297 00:22:03,000 -- 00:22:10,190 Sometimes people have these diagnoses ... and they are misdiagnoses for what is actually autism. 298 00:22:10,190 -- 00:22:11,360 However, 299 00:22:11,370 -- 00:22:19,110 certainly if autism has been diagnosed or if it has been assessed and ruled out, 300 00:22:19,120 -- 00:22:25,480 you can still also have depression or post traumatic stress disorder. 301 00:22:27,220 -- 00:22:55,830 These are things that in themselves create distress and symptomotology that need to be addressed specifically for the individual's well being. Another challenge that we have because of this history of mixing diagnoses and missing autism is that the research that occurs does not really reflect in a reliable way 303 00:22:57,110 -- 00:23:00,600 the differences between autism and other diagnoses. 304 00:23:01,400 -- 00:23:05,760 The reason for that is that a study will take, 305 00:23:05,760 -- 00:23:06,550 for example, 306 00:23:06,550 -- 00:23:12,590 people who have been diagnosed with autism and people who have been diagnosed with bipolar and compare them. 307 00:23:12,600 -- 00:23:13,570 However, 308 00:23:13,570 -- 00:23:16,800 when you really read how that process has gone, 309 00:23:16,810 -- 00:23:26,160 nobody has culled through this group of bipolar individuals to make sure that none of them are actually misdiagnosed autistics. 310 00:23:26,160 -- 00:23:26,320 So, 311 00:23:26,320 -- 00:23:36,990 you've got really strong potential for an autistic group being compared to a group of mixed diagnosis, 312 00:23:36,990 -- 00:23:40,640 perhaps bipolar and autism, 313 00:23:40,650 -- 00:23:43,910 ... similarly for other diagnoses. 314 00:23:45,970 -- 00:23:50,060 Other research studies don't even use diagnosed groups. 315 00:23:50,060 -- 00:24:05,710 Sometimes they'll use people who self report autistic qualities or who complete a questionnaire reflecting autistic qualities to see if higher autistic qualities compares in some way with people who have a different diagnosis. 316 00:24:05,810 -- 00:24:14,920 The group with the different diagnosis or even no diagnosis has not been specifically assessed and autism ruled out. 317 00:24:15,080 -- 00:24:16,080 And secondly, 318 00:24:16,080 -- 00:24:29,200 you can't really conclude much on the basis of a questionnaire of autistic characteristics if you're wanting to compare the actual diagnostic threshold with another state, 319 00:24:29,210 -- 00:24:30,920 another diagnosis. 320 00:24:32,060 -- 00:24:33,850 For example, 321 00:24:33,860 -- 00:24:36,210 a lot of people with ADD 324 00:24:36,850 -- 00:24:38,450 Say well I know ADD 327 00:24:38,840 -- 00:24:41,240 Can include social difficulties. 328 00:24:41,250 -- 00:24:41,390 ADD 331 00:24:41,820 -- 00:24:43,480 Can include sensory issues. 332 00:24:43,480 -- 00:24:43,610 ADD 335 00:24:43,980 -- 00:24:45,920 Can include hyper focus. 336 00:24:47,180 -- 00:24:53,100 ... That may be true but we actually don't know that it's true because the ADD 339 00:24:53,470 -- 00:25:02,890 group has not been actually professionally assessed for people missing a correct diagnosis of autism. 340 00:25:03,400 -- 00:25:09,400 So many of my clients that come for diagnosis have had a diagnosis of ADD 343 00:25:09,870 -- 00:25:12,400 since very early in their life. 344 00:25:12,410 -- 00:25:22,480 And not everyone ... but you do get this problematic mixing and so you can't really be sure what the overlap is. 345 00:25:23,000 -- 00:25:30,520 We do know that people with these other diagnoses have been misdiagnosed to some extent. 346 00:25:30,520 -- 00:25:39,520 We don't know how much because we don't have a correct diagnosis of autism across adulthood and across the lifespan yet. 347 00:25:39,530 -- 00:25:42,380 So we're moving in a good direction, 348 00:25:42,390 -- 00:25:44,540 but these are the complexities. 349 00:25:44,550 -- 00:25:48,240 If we want to talk about diagnosis and why it gets missed, 350 00:25:48,250 -- 00:25:50,080 why it gets misunderstood, 351 00:25:50,090 -- 00:25:54,380 and how come the research can be a little difficult to interpret. 352 00:25:55,730 -- 00:25:59,660 This is foundational knowledge about misdiagnosis. 353 00:25:59,670 -- 00:26:03,920 We are going to be doing a series of a few more episodes, 354 00:26:03,920 -- 00:26:08,300 looking at some of the common misdiagnoses in more detail. 355 00:26:09,230 -- 00:26:13,060 I'm glad you could join me for this conversation about autism, 356 00:26:13,070 -- 00:26:14,230 diagnosis, 357 00:26:14,240 -- 00:26:16,120 elephants and hippos, 358 00:26:16,130 -- 00:26:23,480 and I hope it was illustrative to just set that foundation for the complexity that we are diving into. 359 00:26:24,190 -- 00:26:25,840 I hope you join me next time.

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

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