1 00:00:15,276 --> 00:00:23,396 Speaker 1: Pushkin. A little content warning. We get into some pretty 2 00:00:23,436 --> 00:00:26,156 Speaker 1: troubling descriptions of autism from back in the day in 3 00:00:26,156 --> 00:00:30,556 Speaker 1: this episode, plus some deluxe feelings and some tears, so 4 00:00:30,916 --> 00:00:40,556 Speaker 1: keep that in mind when listening. Okay, onwards. I'm a 5 00:00:40,596 --> 00:00:43,676 Speaker 1: person who wants to know all the answers. It drove 6 00:00:43,716 --> 00:00:46,236 Speaker 1: my parents' nuts when I was a kid. I just 7 00:00:46,316 --> 00:00:51,276 Speaker 1: wanted to know everything, and this autism evaluation process was 8 00:00:51,316 --> 00:00:54,316 Speaker 1: no different. I didn't just want to blindly take a 9 00:00:54,316 --> 00:00:57,236 Speaker 1: bunch of tests and spill my guts out to a therapist. 10 00:00:57,836 --> 00:01:02,156 Speaker 1: I wanted to understand the legacy of autism diagnostics. So 11 00:01:02,276 --> 00:01:04,556 Speaker 1: I put on my reporter hat and dug into it. 12 00:01:04,876 --> 00:01:07,556 Speaker 1: And by reporter hat, I mean a jaunty little fedora 13 00:01:07,676 --> 00:01:10,276 Speaker 1: that has a press pass champ hat band. All of 14 00:01:10,356 --> 00:01:17,956 Speaker 1: US journalists have one. The history of autism testing kind 15 00:01:17,996 --> 00:01:21,516 Speaker 1: of starts with a guy named doctor Bernard Rimland. In 16 00:01:21,636 --> 00:01:24,996 Speaker 1: nineteen fifty six, Bernard and his wife Gloria welcome their 17 00:01:24,996 --> 00:01:28,476 Speaker 1: first child, Mark to the new dad. His infant son 18 00:01:28,596 --> 00:01:31,636 Speaker 1: seemed different from all the other Dodo babies in the nursery. 19 00:01:32,116 --> 00:01:36,836 Speaker 1: Baby Mark was wide eyed and precocious looking. Bernie recalled 20 00:01:38,236 --> 00:01:41,076 Speaker 1: when Bernie and Gloria got Mark home from the hospital, 21 00:01:41,156 --> 00:01:45,836 Speaker 1: they knew something was off. He screamed non stop, sometimes 22 00:01:45,836 --> 00:01:49,316 Speaker 1: twelve hours a day, and trying to comfort him only 23 00:01:49,396 --> 00:01:52,796 Speaker 1: made it worse. The howling was so constant and so 24 00:01:52,996 --> 00:01:57,676 Speaker 1: piercing that the Rimlins neighbors would complain real neighbor lead jerks. 25 00:01:59,356 --> 00:02:02,396 Speaker 1: But it wasn't just the endless wailing that gave the 26 00:02:02,476 --> 00:02:05,916 Speaker 1: Rimlins pause. As Mark got older, he would also bang 27 00:02:05,996 --> 00:02:08,916 Speaker 1: his head against the wall, rock endlessly back and forth 28 00:02:09,196 --> 00:02:14,356 Speaker 1: and speaking full sentences but to no one. Once he shouted, 29 00:02:14,436 --> 00:02:17,556 Speaker 1: come on, let's play ball out of nowhere, Much to 30 00:02:17,796 --> 00:02:22,556 Speaker 1: his parents' surprise, Bernie and Gloria knew this was far 31 00:02:22,716 --> 00:02:26,876 Speaker 1: from typical behavior. Together, the harried parents took Mark to 32 00:02:26,996 --> 00:02:31,116 Speaker 1: pediatricians and psychotherapists to figure out what was going on, 33 00:02:31,756 --> 00:02:34,876 Speaker 1: but none of the professionals had a clue what was wrong. 34 00:02:35,596 --> 00:02:40,276 Speaker 1: One of the psychologists they saw repeatedly asked, Bernie, why 35 00:02:40,356 --> 00:02:51,556 Speaker 1: do you hate your son? Not helpful. One thing you 36 00:02:51,636 --> 00:02:54,036 Speaker 1: need to know about old Bernie Rimland is that he 37 00:02:54,076 --> 00:02:58,116 Speaker 1: wasn't just a concerned dad. He was also a psychologist. 38 00:02:58,836 --> 00:03:02,036 Speaker 1: Beginning in the nineteen fifties, Bernie served as the director 39 00:03:02,036 --> 00:03:05,396 Speaker 1: of research at a naval base in California. He had 40 00:03:05,396 --> 00:03:10,556 Speaker 1: a PhD in experimental psychology and an expertise in psychometrics, 41 00:03:10,716 --> 00:03:15,636 Speaker 1: or the measurement of mental attributes, behavior and performance. So 42 00:03:15,676 --> 00:03:19,316 Speaker 1: it was Bernie's job to devise personnel testing programs for 43 00:03:19,396 --> 00:03:22,876 Speaker 1: the Navy. The dude clearly knew his way around data 44 00:03:22,916 --> 00:03:26,916 Speaker 1: and analysis, but Bernie's professional pedigree didn't make it any 45 00:03:27,036 --> 00:03:30,276 Speaker 1: easier for the Rimlans to get answers about Mark. There 46 00:03:30,356 --> 00:03:33,516 Speaker 1: was no Google or YouTube or Facebook back then, no 47 00:03:33,836 --> 00:03:38,076 Speaker 1: parents support groups or school based programs, and the doctors 48 00:03:38,076 --> 00:03:41,756 Speaker 1: were practically useless. The standard advice at the time for 49 00:03:41,916 --> 00:03:45,316 Speaker 1: parents of kids like Mark was to institutionalize them and 50 00:03:45,396 --> 00:03:49,116 Speaker 1: basically forget they ever existed. Kids who behave like Mark 51 00:03:49,116 --> 00:03:54,076 Speaker 1: were considered demented and labeled as freaks, repulsive, and unworthy 52 00:03:54,116 --> 00:03:58,556 Speaker 1: of care. At the suggestion that Bernie institutionalized Mark, he 53 00:03:58,636 --> 00:04:01,636 Speaker 1: was like, oh, yeah, no, we're not doing that. He 54 00:04:01,756 --> 00:04:04,956 Speaker 1: and Gloria were going to figure this out. They were 55 00:04:04,996 --> 00:04:08,996 Speaker 1: going to do with the medical community couldn't or wouldn't 56 00:04:09,236 --> 00:04:13,396 Speaker 1: do so. The pair poured through their old psychology textbooks 57 00:04:13,396 --> 00:04:16,636 Speaker 1: and finally landed on what they thought was the answer, 58 00:04:17,516 --> 00:04:22,276 Speaker 1: Mark was autistic. Because this was the fifties, most doctors 59 00:04:22,316 --> 00:04:26,916 Speaker 1: had never heard of autism. It was like autism what autism? 60 00:04:26,916 --> 00:04:29,876 Speaker 1: And those who did know what autism was described it 61 00:04:29,916 --> 00:04:36,836 Speaker 1: like this, children in a show in a glass ball, 62 00:04:40,156 --> 00:04:43,796 Speaker 1: cut off from the world around them. I mean, was 63 00:04:43,836 --> 00:04:46,316 Speaker 1: the kiddes snow globe? Why was he in a glass ball? 64 00:04:47,116 --> 00:04:50,796 Speaker 1: But this was the way autism, or infantile autism as 65 00:04:50,836 --> 00:04:53,276 Speaker 1: it was called then, was talked about in Mark's youth, 66 00:04:53,796 --> 00:04:59,636 Speaker 1: if it was talked about at all. Autistic people were afflicted, cursed, possessed, 67 00:05:00,036 --> 00:05:05,596 Speaker 1: they had demons, they weren't right. So basically prevailing ideas 68 00:05:05,596 --> 00:05:08,916 Speaker 1: about autism at the time were trash. And because there 69 00:05:08,996 --> 00:05:13,476 Speaker 1: was hardly any clinical understanding of the condition, many autistic 70 00:05:13,556 --> 00:05:16,036 Speaker 1: kids and their parents were left to fend for themselves. 71 00:05:16,516 --> 00:05:19,796 Speaker 1: But our pal Bernie figured he could change that. He 72 00:05:19,956 --> 00:05:22,516 Speaker 1: was like, why can't I come up with some sort 73 00:05:22,556 --> 00:05:25,876 Speaker 1: of standard test for autism. I have all the psych skills, 74 00:05:26,036 --> 00:05:29,636 Speaker 1: I'm all about psychometrics, I can do this thing or 75 00:05:29,636 --> 00:05:34,796 Speaker 1: something like that. And it's kind of because of this 76 00:05:34,996 --> 00:05:38,076 Speaker 1: diy Dad, that I found myself sitting in front of 77 00:05:38,116 --> 00:05:41,516 Speaker 1: my computer on a mid November Day, staring down a 78 00:05:41,556 --> 00:05:47,156 Speaker 1: half dozen autism tests. You're listening to the Loudest Girl 79 00:05:47,156 --> 00:05:50,076 Speaker 1: in the World. Who is not your high school best friend. 80 00:05:50,436 --> 00:05:54,156 Speaker 1: It's me, Lauren Ober The Loudest Girl in the World 81 00:05:54,316 --> 00:05:57,036 Speaker 1: is a show about finding yourself broken in a pretty 82 00:05:57,116 --> 00:06:00,316 Speaker 1: dark place and emerging from that place a mostly glued 83 00:06:00,356 --> 00:06:08,676 Speaker 1: back together person, for better or worse. There's a long 84 00:06:08,796 --> 00:06:13,356 Speaker 1: history of parent involvement in autism, but Bernard Rimland might 85 00:06:13,516 --> 00:06:17,636 Speaker 1: be the most influential autism parent. Once he and his 86 00:06:17,716 --> 00:06:21,196 Speaker 1: wife landed on an autism diagnosis for their son, Bernie 87 00:06:21,236 --> 00:06:23,636 Speaker 1: was going to fix him and cure all the other 88 00:06:23,756 --> 00:06:27,596 Speaker 1: autistic kids in the process. After nearly a decade of 89 00:06:27,596 --> 00:06:30,956 Speaker 1: obsessive research and observation of his son and other kids 90 00:06:30,996 --> 00:06:34,316 Speaker 1: like him, Bernie published a book in nineteen sixty four. 91 00:06:34,796 --> 00:06:39,596 Speaker 1: It was called Infantile Autism, The Syndrome and Its Implications 92 00:06:39,636 --> 00:06:45,236 Speaker 1: for a Neural Theory of behavior. Infantile autism apparently was 93 00:06:45,996 --> 00:06:51,036 Speaker 1: a rare and mystifying disorder of obscure ideology and uncertain prognosis. 94 00:06:51,516 --> 00:06:55,236 Speaker 1: This is from the nineteen sixty eight educational film Infantile 95 00:06:55,316 --> 00:06:59,916 Speaker 1: Autism The Invisible Wall. It is predominantly characterized by self 96 00:06:59,956 --> 00:07:04,716 Speaker 1: imposed isolation disinterest in other persons, along with a compulsive 97 00:07:04,716 --> 00:07:12,676 Speaker 1: interest in mechanical objects, insistence on the preservation sameless and 98 00:07:12,916 --> 00:07:17,836 Speaker 1: highly characteristic language. Behavior. At the back of Bernie's book 99 00:07:17,876 --> 00:07:23,316 Speaker 1: was a questionnaire called the Diagnostic Checklist for Behavior Disturbed Children. 100 00:07:23,996 --> 00:07:27,076 Speaker 1: The questionnaire, or E one as it came to be known, 101 00:07:27,236 --> 00:07:32,756 Speaker 1: revolutionized the assessment and diagnosis of autistic kids. Here's Rimland 102 00:07:32,796 --> 00:07:37,396 Speaker 1: explaining his checklist in that same documentary. I myself and 103 00:07:37,556 --> 00:07:41,156 Speaker 1: working on an objective diagnostic checklist approach to this problem. 104 00:07:41,436 --> 00:07:45,516 Speaker 1: This checklist is capable of picking out cases of infantile autism. 105 00:07:45,556 --> 00:07:49,316 Speaker 1: The checklist featured seventy six questions about a kid's behavior 106 00:07:49,356 --> 00:07:53,876 Speaker 1: from birth to age seven. Now, to my non scientist brain, 107 00:07:54,116 --> 00:07:58,196 Speaker 1: these questions seem I don't know, kind of harsh, definitely 108 00:07:58,236 --> 00:08:02,236 Speaker 1: not from the perspective of an actual autistic person, Like 109 00:08:03,396 --> 00:08:06,916 Speaker 1: is the child destructive? Did you ever suspect the child 110 00:08:07,076 --> 00:08:13,196 Speaker 1: was nearly deaf? Will the child readily accept new sweaters, pajamas, etc. 111 00:08:14,436 --> 00:08:18,156 Speaker 1: Does the child say phrases over and over in a hollow, 112 00:08:18,396 --> 00:08:22,716 Speaker 1: parrot like or echo like voice to no purpose? And 113 00:08:22,916 --> 00:08:26,756 Speaker 1: my favorite, does the child look through or walk through 114 00:08:26,916 --> 00:08:30,276 Speaker 1: people as though they weren't there. And the answer to 115 00:08:30,356 --> 00:08:36,036 Speaker 1: that is yes, because the child is a ghost. Okay. 116 00:08:36,116 --> 00:08:40,596 Speaker 1: So the first standardized tool for assessing autism definitely framed 117 00:08:40,636 --> 00:08:45,196 Speaker 1: autism as a problem and autistic kids as troubled. But 118 00:08:45,476 --> 00:08:48,036 Speaker 1: at the time it was the only one of its kind. 119 00:08:48,436 --> 00:08:51,596 Speaker 1: There were no other resources like it, which is why 120 00:08:51,596 --> 00:08:54,476 Speaker 1: Bernie was getting inundated with mail. After the book with 121 00:08:54,516 --> 00:08:58,876 Speaker 1: the questionnaire came out, parents desperate for answers were ripping 122 00:08:58,916 --> 00:09:01,956 Speaker 1: the questionnaire from the book, filling it out, sending it 123 00:09:01,996 --> 00:09:03,796 Speaker 1: to Bernie in the hopes that he would do some 124 00:09:03,836 --> 00:09:06,516 Speaker 1: tabulations and let them know what was up with their kid. 125 00:09:07,276 --> 00:09:11,556 Speaker 1: They needed to know the why hind their children's atypical behaviors. 126 00:09:12,396 --> 00:09:16,116 Speaker 1: Here's some parents from that same educational film. And we 127 00:09:16,276 --> 00:09:18,956 Speaker 1: noticed this stiffly. Whenever you try to pick him up. 128 00:09:19,276 --> 00:09:21,796 Speaker 1: He never would seem to mold himself to a source, 129 00:09:22,236 --> 00:09:24,796 Speaker 1: kind of Richard like. But he chose to write on 130 00:09:24,796 --> 00:09:29,436 Speaker 1: the wall, and he wrote, and no amount of schooling 131 00:09:29,676 --> 00:09:32,836 Speaker 1: with health. We were the only half in the whole community. 132 00:09:32,876 --> 00:09:36,116 Speaker 1: They had his words of the ceiling. He's just like 133 00:09:36,396 --> 00:09:40,516 Speaker 1: almost like a little robot or a computer. Things come 134 00:09:40,556 --> 00:09:43,516 Speaker 1: in and come out exactly. It was like go in 135 00:09:43,716 --> 00:09:48,436 Speaker 1: word for word, yes, because all autistic people are robots. 136 00:09:50,996 --> 00:09:53,636 Speaker 1: Even though our buddy Bernie was pissed that people were 137 00:09:53,716 --> 00:09:57,436 Speaker 1: tearing pages from his book, he grated every questionnaire and 138 00:09:57,516 --> 00:10:00,556 Speaker 1: got back to every parent. Many of them viewed Bernie 139 00:10:00,676 --> 00:10:04,396 Speaker 1: as a savior or a saint. He gave them answers 140 00:10:04,476 --> 00:10:09,556 Speaker 1: and hope. Sadly, though, Bernard went on to have some 141 00:10:09,636 --> 00:10:13,236 Speaker 1: pretty garbage ideas about autistic people. He was of the 142 00:10:13,276 --> 00:10:16,876 Speaker 1: school that autistic people need to be fixed or can 143 00:10:16,916 --> 00:10:20,796 Speaker 1: be cured, like how some confused people think gay folks 144 00:10:20,796 --> 00:10:24,556 Speaker 1: can be turned straight. Burnie also peddled the myth that 145 00:10:24,796 --> 00:10:29,556 Speaker 1: vaccines caused autism, which they do not. He supported aversives 146 00:10:29,676 --> 00:10:33,796 Speaker 1: like electric cattle prods, and he compared autistic kids to 147 00:10:33,876 --> 00:10:37,676 Speaker 1: animals like here in that same documentary. What's interesting about 148 00:10:37,676 --> 00:10:41,076 Speaker 1: training autistic cholity as opposed to training animals is that 149 00:10:41,116 --> 00:10:43,276 Speaker 1: when you train an animal, he can learn only those 150 00:10:43,316 --> 00:10:46,236 Speaker 1: tricks that you've trained, and then nothing more. However, even 151 00:10:46,276 --> 00:10:49,276 Speaker 1: though that that hair shown for several improvement have never 152 00:10:49,356 --> 00:10:55,516 Speaker 1: to my knowledge, become truly normal, who yish Burnie's ideas 153 00:10:55,556 --> 00:10:58,196 Speaker 1: about fixing and Curing did a lot of harm to 154 00:10:58,276 --> 00:11:03,036 Speaker 1: autistic kids. Plus he influenced generations of parents into thinking 155 00:11:03,036 --> 00:11:07,356 Speaker 1: their autistic kids were deficient instead of just different. But 156 00:11:07,556 --> 00:11:10,276 Speaker 1: Bernie was the first to come up with a standardized 157 00:11:10,316 --> 00:11:15,356 Speaker 1: evaluative tool for autism, so we got to give him that. Eventually, 158 00:11:15,436 --> 00:11:18,396 Speaker 1: the E one checklist gave way to other methods of 159 00:11:18,436 --> 00:11:23,276 Speaker 1: evaluating folks for autism. There's no definitive test because, as 160 00:11:23,316 --> 00:11:26,676 Speaker 1: I mentioned before, if you know one autistic person, you 161 00:11:26,716 --> 00:11:30,516 Speaker 1: know one autistic person. But at least the test today, 162 00:11:30,836 --> 00:11:33,516 Speaker 1: like the ones I was prepping to take, aren't asking 163 00:11:34,076 --> 00:11:37,756 Speaker 1: is the child cuddly? Or do people consider the child 164 00:11:38,036 --> 00:11:42,676 Speaker 1: especially attractive? These tests were important for me as an 165 00:11:42,676 --> 00:11:45,796 Speaker 1: adult because I wanted to understand my brain and my 166 00:11:45,956 --> 00:11:49,996 Speaker 1: challenges and maybe even my strengths. I wanted a name, 167 00:11:50,236 --> 00:11:53,036 Speaker 1: or a framework or a prism through which to view 168 00:11:53,076 --> 00:11:56,836 Speaker 1: my own experience, and if I'm honest, I just wanted 169 00:11:56,836 --> 00:11:58,796 Speaker 1: to fill in a bunch of circles with my pencil. 170 00:11:59,236 --> 00:12:03,476 Speaker 1: Just kidding. The tests are online. After the break, we 171 00:12:03,556 --> 00:12:20,396 Speaker 1: get into them, I mean, we really get into them. 172 00:12:20,436 --> 00:12:24,236 Speaker 1: As I mentioned in a previous episode, Doctor Natalie Engelbrick, 173 00:12:24,356 --> 00:12:27,076 Speaker 1: the Canadian psychotherapist I was working with to get an 174 00:12:27,116 --> 00:12:32,556 Speaker 1: evaluation has a two part process, a preliminary assessment and 175 00:12:32,796 --> 00:12:37,516 Speaker 1: then a formal screening report. And the preliminary assessment consists 176 00:12:37,556 --> 00:12:43,436 Speaker 1: of thirteen questions that require written answers plus six psychometric tests, 177 00:12:44,036 --> 00:12:46,796 Speaker 1: also a follow up appointment to go through all the 178 00:12:46,876 --> 00:12:51,636 Speaker 1: information with doctor Natalie. Because I am a notorious heel dragger, 179 00:12:51,796 --> 00:12:54,476 Speaker 1: I put off taking all the tests. It just seemed 180 00:12:54,516 --> 00:12:59,116 Speaker 1: too intimidating. For weeks, I literally had take autism test 181 00:12:59,236 --> 00:13:02,796 Speaker 1: on my to do list along with paint bedroom, get 182 00:13:02,836 --> 00:13:07,476 Speaker 1: glasses fixed, and buy new blinds for living room. Finally, 183 00:13:07,636 --> 00:13:10,996 Speaker 1: on a random Friday, I fired up the old computer 184 00:13:11,236 --> 00:13:17,956 Speaker 1: and got to it. All. Right, well, I guess today 185 00:13:18,036 --> 00:13:26,196 Speaker 1: is today. I'm gonna do this screening questionnaire. Okay. The 186 00:13:26,276 --> 00:13:30,636 Speaker 1: first question was what differences in social interactions do you experience? 187 00:13:30,956 --> 00:13:36,436 Speaker 1: Such as emotions, interests, initiating conversations, interrupting, not knowing when 188 00:13:36,476 --> 00:13:39,516 Speaker 1: to talk. Oh man, we're getting into it right out 189 00:13:39,516 --> 00:13:42,036 Speaker 1: of the gate, no four play or nothing. I feel 190 00:13:42,236 --> 00:13:47,516 Speaker 1: little anxious about doing this because I don't think I've 191 00:13:47,516 --> 00:13:52,836 Speaker 1: had to write anything about social interactions or relationships or 192 00:13:53,116 --> 00:13:59,436 Speaker 1: steaming behavior before. So that's a little bit stressful to 193 00:13:59,476 --> 00:14:03,036 Speaker 1: put it down on paper because it's just something I've 194 00:14:03,076 --> 00:14:09,356 Speaker 1: never done before. But anxiety or not, I just had 195 00:14:09,356 --> 00:14:11,956 Speaker 1: to get on with it. One of the first questions 196 00:14:12,156 --> 00:14:16,836 Speaker 1: was do you engage in stereotyped or repetitive motor movements 197 00:14:16,916 --> 00:14:22,676 Speaker 1: known as stimming behavior, hand flapping, fidgeting, aligning objects, humming, 198 00:14:22,836 --> 00:14:28,116 Speaker 1: repeating phrases, etc. If so, what are your stems? I 199 00:14:28,236 --> 00:14:31,236 Speaker 1: was pretty proud of my answer, I wrote, I would 200 00:14:31,316 --> 00:14:33,996 Speaker 1: say that I am a casual rocker. When I wait 201 00:14:34,036 --> 00:14:36,756 Speaker 1: in line, I tend to rock back and forth. I 202 00:14:36,796 --> 00:14:39,156 Speaker 1: also often find that my legs are in motion when 203 00:14:39,196 --> 00:14:42,356 Speaker 1: I'm sitting down. If my legs are crossed, I'm always 204 00:14:42,396 --> 00:14:45,516 Speaker 1: moving my foot in a circular direction. Also, when I'm 205 00:14:45,556 --> 00:14:47,996 Speaker 1: in bed, I am often rubbing my feet together. I 206 00:14:48,076 --> 00:14:50,516 Speaker 1: often don't notice it and my girlfriend has to ask 207 00:14:50,556 --> 00:14:53,516 Speaker 1: me to stop. But what I really should have written 208 00:14:53,756 --> 00:14:57,316 Speaker 1: was yes, I stim by rubbing my fingers back and forth, 209 00:14:57,436 --> 00:15:00,716 Speaker 1: over and over and over on a particularly disgusting blanket 210 00:15:00,716 --> 00:15:04,116 Speaker 1: that my girlfriend calls linus the jankie blankie, and that 211 00:15:04,316 --> 00:15:06,476 Speaker 1: is a source of great shame for me. In fact, 212 00:15:06,516 --> 00:15:09,156 Speaker 1: I'm doing it now, even though the repetitive motion and 213 00:15:09,236 --> 00:15:13,716 Speaker 1: overtime has caused not only tennis elbow, but also golfer's elbow. 214 00:15:13,956 --> 00:15:16,796 Speaker 1: Who knew there was such a thing. The rest of 215 00:15:16,836 --> 00:15:23,516 Speaker 1: the questions were equally stressful to answer. What differences in 216 00:15:23,596 --> 00:15:28,036 Speaker 1: relationships do you experience? Such as difficulty adjusting behavior two 217 00:15:28,116 --> 00:15:31,716 Speaker 1: different social contacts? Making friends? I've had a really hard 218 00:15:31,716 --> 00:15:34,676 Speaker 1: time making friends Over the years. As I've aged, I've 219 00:15:34,716 --> 00:15:36,636 Speaker 1: gotten better at it. But when I was a kid, 220 00:15:36,756 --> 00:15:39,396 Speaker 1: I had no friends. I mean I was friendly with 221 00:15:39,556 --> 00:15:43,076 Speaker 1: What are your sensory differences slash challenges? There are certain 222 00:15:43,116 --> 00:15:46,996 Speaker 1: textures that just really feel bad, Like I hate the 223 00:15:47,036 --> 00:15:49,836 Speaker 1: feeling of my thumb circling the waistband of my underwear 224 00:15:49,836 --> 00:15:53,396 Speaker 1: when I'm pulling up my pants. Do you camouflage slash masks? 225 00:15:53,516 --> 00:15:56,116 Speaker 1: I'm a woman with a very public job. As you 226 00:15:56,276 --> 00:15:58,836 Speaker 1: change your behavior in order to fit in with others 227 00:15:58,876 --> 00:16:01,996 Speaker 1: more smoothly, they would laugh in my face because in 228 00:16:02,116 --> 00:16:05,476 Speaker 1: fact that has happened. Anything I hate a light time 229 00:16:05,556 --> 00:16:07,636 Speaker 1: in my adult relationships. I think I can have a 230 00:16:07,636 --> 00:16:09,916 Speaker 1: hard time, and I think those were this makes my skin. 231 00:16:21,876 --> 00:16:26,116 Speaker 1: After answering all those questions, I started to feel really bad. 232 00:16:26,716 --> 00:16:29,276 Speaker 1: I added this sentence to the bottom of my answer. 233 00:16:29,916 --> 00:16:32,276 Speaker 1: Writing this out is making me feel like a freak, 234 00:16:33,116 --> 00:16:38,076 Speaker 1: because it was. It made me feel so needy and particular, 235 00:16:38,196 --> 00:16:40,836 Speaker 1: and like, why can't you just get over this? This 236 00:16:40,876 --> 00:16:45,316 Speaker 1: isn't a pathology, this is just weirdness. But I kept 237 00:16:45,316 --> 00:16:49,836 Speaker 1: on writing, and two hours and five single space pages later, 238 00:16:50,076 --> 00:16:52,476 Speaker 1: I had a document summing up what I thought were 239 00:16:52,516 --> 00:16:57,076 Speaker 1: my challenges. A few days later I started the psychometric tests. 240 00:16:58,036 --> 00:17:03,396 Speaker 1: Make it somewhat Oh, come on now, whatever, Sometimes this 241 00:17:03,676 --> 00:17:10,356 Speaker 1: nonsense words get into it. Mccarronian the pot boo documenting. 242 00:17:10,516 --> 00:17:16,916 Speaker 1: Take screenshots of your answers and results, should make a 243 00:17:16,996 --> 00:17:24,756 Speaker 1: morquy section windows. Well, I'm a screenshotting this the process 244 00:17:24,796 --> 00:17:29,636 Speaker 1: of the images, name all the files accordingly. This is 245 00:17:29,756 --> 00:17:36,476 Speaker 1: unnecessarily complicated, I think. So I have to answer thirteen 246 00:17:36,676 --> 00:17:42,316 Speaker 1: questions typed out, and then I have to do one, two, three, four, 247 00:17:42,636 --> 00:17:53,796 Speaker 1: five six psychometric tests. Oh god, all right, Oh, I'm 248 00:17:53,836 --> 00:17:59,556 Speaker 1: gotta do it first, the AQ or Autism Quotient test. 249 00:17:59,596 --> 00:18:02,316 Speaker 1: This tool was developed in two thousand and one by 250 00:18:02,396 --> 00:18:07,236 Speaker 1: Sir Simon Baron Cohen, a British clinical psychologist and cousin 251 00:18:07,276 --> 00:18:12,116 Speaker 1: to actor Sasha Baron of borat fame. Simon's a bit 252 00:18:12,116 --> 00:18:15,436 Speaker 1: of a lightning rod in neurodivergent circles because of his 253 00:18:15,596 --> 00:18:19,036 Speaker 1: theory that autistic people see the world through a mail 254 00:18:19,436 --> 00:18:23,996 Speaker 1: lens and are mostly interested in things that are stereotypically male, 255 00:18:24,676 --> 00:18:29,236 Speaker 1: like trains or computers, or telling people that they're wrong. 256 00:18:30,716 --> 00:18:33,716 Speaker 1: Some of the questions seem skewed towards men and boys, 257 00:18:34,036 --> 00:18:38,316 Speaker 1: like I usually notice car number plates or similar strings 258 00:18:38,316 --> 00:18:45,316 Speaker 1: of information. Definitely agree, slightly agree, slightly disagree, definitely disagree. 259 00:18:45,956 --> 00:18:50,316 Speaker 1: I definitely disagree because I am enumerate and numbers give 260 00:18:50,356 --> 00:18:55,036 Speaker 1: me hives. Some questions just seemed outdated. I would rather 261 00:18:55,276 --> 00:18:58,516 Speaker 1: go to a library than a party, like who's just 262 00:18:58,596 --> 00:19:01,076 Speaker 1: hanging out of a library for fun these days? Besides 263 00:19:01,116 --> 00:19:05,516 Speaker 1: little children? Over the next few days, I took the 264 00:19:05,756 --> 00:19:10,516 Speaker 1: rads R the Aspy Quiz, the Cat Queue RBQ two A, 265 00:19:11,036 --> 00:19:15,796 Speaker 1: and the VIA tests and answered questions like have others 266 00:19:15,836 --> 00:19:18,716 Speaker 1: told you that you have an odd posture or gait? 267 00:19:19,276 --> 00:19:22,396 Speaker 1: And are you often surprised when others tell you that 268 00:19:22,436 --> 00:19:26,076 Speaker 1: you have been rude? And do you like tongue kissing? 269 00:19:26,716 --> 00:19:30,316 Speaker 1: My answers if you're wondering, were no, yes, and it 270 00:19:30,356 --> 00:19:32,156 Speaker 1: depends if the person I'm making out with is a 271 00:19:32,236 --> 00:19:37,276 Speaker 1: total babe. Gross. One of these tests really made me nuts. 272 00:19:38,196 --> 00:19:40,556 Speaker 1: All I'm saying right now is it. One of these 273 00:19:40,596 --> 00:19:44,396 Speaker 1: goddamn tests is making me do math? I mean literally like, 274 00:19:44,556 --> 00:19:47,716 Speaker 1: add up these scores in this statement and you know, 275 00:19:47,876 --> 00:19:50,556 Speaker 1: carry the one and flip this number around. I'm like, 276 00:19:50,716 --> 00:19:53,716 Speaker 1: h No, I didn't sign up for this. Sorry, I 277 00:19:53,796 --> 00:19:56,556 Speaker 1: have popcorn in my mouth. I'd rather like, literally not 278 00:19:57,036 --> 00:20:00,836 Speaker 1: know what is going on than have to do math. 279 00:20:01,116 --> 00:20:04,356 Speaker 1: This is truly bullshit and I didn't sign up for this. 280 00:20:06,036 --> 00:20:15,076 Speaker 1: It's literally hurting my brain right now. After a few 281 00:20:15,156 --> 00:20:19,716 Speaker 1: days of self examination, I was exhausted. Bernie Rimlin's initial 282 00:20:19,956 --> 00:20:23,876 Speaker 1: E one questionnaire was geared towards parents observing their kids, 283 00:20:24,356 --> 00:20:27,156 Speaker 1: but here I was trying to assess my own damn self, 284 00:20:27,636 --> 00:20:32,196 Speaker 1: and that felt weird and unpleasant. It was not like 285 00:20:32,356 --> 00:20:36,356 Speaker 1: taking a Cosmo quiz. But I did it, and then 286 00:20:36,476 --> 00:20:38,996 Speaker 1: I sent everything off to doctor Natalie and tried to 287 00:20:38,996 --> 00:20:44,556 Speaker 1: put the whole experience out of my mind. Not two 288 00:20:44,596 --> 00:20:47,556 Speaker 1: weeks later, I got an email from doctor Natalie. The 289 00:20:47,636 --> 00:20:52,156 Speaker 1: subject line read in all caps screening report, but I 290 00:20:52,236 --> 00:20:55,676 Speaker 1: didn't open the email. Instead, I texted this to my 291 00:20:55,716 --> 00:20:59,356 Speaker 1: girlfriend Hannah. I got an email from the autism doc, 292 00:20:59,476 --> 00:21:02,476 Speaker 1: but you said I can't open it without you. It 293 00:21:02,596 --> 00:21:05,156 Speaker 1: was a Saturday afternoon when I got the screening report 294 00:21:05,276 --> 00:21:08,036 Speaker 1: email and Hannah was out of town for the day. 295 00:21:09,156 --> 00:21:12,756 Speaker 1: Hana rope back, No, please don't. If you're desperate, we 296 00:21:12,796 --> 00:21:15,676 Speaker 1: can do it tonight by zoom or during the day tomorrow. 297 00:21:15,756 --> 00:21:19,836 Speaker 1: I'll come over. So I just had to sit on 298 00:21:19,876 --> 00:21:24,076 Speaker 1: my hands and not open the email. The restraint, I 299 00:21:24,156 --> 00:21:26,876 Speaker 1: took the dog for a long walk, ordered tie takeout 300 00:21:26,916 --> 00:21:29,636 Speaker 1: and binge Season four of The Crown. It felt like 301 00:21:29,636 --> 00:21:33,556 Speaker 1: the longest night of my life. The next morning, Hannah 302 00:21:33,636 --> 00:21:36,516 Speaker 1: came over to my apartment. Have you like really not 303 00:21:36,636 --> 00:21:40,156 Speaker 1: opened this yet? No? Look, look I have not opened this. 304 00:21:40,516 --> 00:21:42,596 Speaker 1: Did you not open it because I wasn't here and 305 00:21:42,636 --> 00:21:44,196 Speaker 1: I made you not open it? Or did you not 306 00:21:44,276 --> 00:21:48,636 Speaker 1: open it because you because it's too big? No, because 307 00:21:48,676 --> 00:21:51,076 Speaker 1: you made me not open it. You literally sent me 308 00:21:51,116 --> 00:21:54,276 Speaker 1: like nine hundred text messages that were like absolutely, do 309 00:21:54,356 --> 00:21:57,356 Speaker 1: not open it in like all caps, like do not 310 00:21:57,516 --> 00:22:00,516 Speaker 1: open it. I love you, don't open it. Don't open it. 311 00:22:02,716 --> 00:22:06,076 Speaker 1: But now the way it was over all was about 312 00:22:06,116 --> 00:22:17,556 Speaker 1: to be revealed? Or was it I'm not sure how 313 00:22:17,596 --> 00:22:20,316 Speaker 1: one is supposed to feel when anticipating the results of 314 00:22:20,356 --> 00:22:23,716 Speaker 1: an autism screening assessment. I mean, it's not like I 315 00:22:23,756 --> 00:22:26,716 Speaker 1: was waiting to hear whether a biopsy found cancer or anything. 316 00:22:27,676 --> 00:22:31,356 Speaker 1: Regardless of the results of my screening, nothing fundamental would 317 00:22:31,436 --> 00:22:34,036 Speaker 1: change in my life, right I wasn't going to die 318 00:22:34,196 --> 00:22:36,516 Speaker 1: or lose my home or get fired from my job. 319 00:22:37,036 --> 00:22:40,076 Speaker 1: I mean, mostly because I didn't have one. Still, I 320 00:22:40,156 --> 00:22:43,836 Speaker 1: was freaked out. Well, what are you more worried that 321 00:22:43,996 --> 00:22:47,836 Speaker 1: it's yes or no? I just want to note that 322 00:22:47,876 --> 00:22:51,036 Speaker 1: the dog is sitting snuggling with you right now when 323 00:22:51,076 --> 00:22:54,916 Speaker 1: I'm the one who needs comfort like dog, don't you 324 00:22:54,956 --> 00:22:59,916 Speaker 1: realize like I'm the one in a situation here, whatever 325 00:22:59,996 --> 00:23:05,676 Speaker 1: we're now, I'm just rambling. Should just open it? Why 326 00:23:05,676 --> 00:23:10,636 Speaker 1: are you looking at me like that? Because I'm okay, 327 00:23:10,676 --> 00:23:13,036 Speaker 1: I'm nervous for you. I'm just nervous for you. It's 328 00:23:13,076 --> 00:23:14,716 Speaker 1: like a lot at state. Do you think I need 329 00:23:14,716 --> 00:23:17,796 Speaker 1: to have like a game plan of like if yes this, 330 00:23:18,076 --> 00:23:23,996 Speaker 1: if no this, like before you open it? Do you 331 00:23:24,076 --> 00:23:27,716 Speaker 1: need a game plan? I actually guess I didn't think 332 00:23:27,756 --> 00:23:30,676 Speaker 1: about what the scenarios where I'm always somebody who games 333 00:23:30,716 --> 00:23:34,716 Speaker 1: out like you're gaming out the logistics, Like, yes, I'm 334 00:23:34,716 --> 00:23:37,076 Speaker 1: gaming out the logistics because the logistics are how I 335 00:23:37,116 --> 00:23:40,676 Speaker 1: can manage my feelings around this or manage like what 336 00:23:40,756 --> 00:23:44,956 Speaker 1: you do. Because if you get a flat out like yeah, 337 00:23:44,996 --> 00:23:47,396 Speaker 1: I don't see anything you hear you seem totally typical 338 00:23:47,436 --> 00:23:52,556 Speaker 1: and like, you know, everything is fine, then I think 339 00:23:52,556 --> 00:23:56,796 Speaker 1: that opens like a real Pandora's box of well, now 340 00:23:56,836 --> 00:23:59,396 Speaker 1: what and now what do I do? So let's say 341 00:23:59,836 --> 00:24:04,116 Speaker 1: she read everything you wrote, all sort of recollections of 342 00:24:04,276 --> 00:24:08,636 Speaker 1: your childhood and just like memories and pain points, and 343 00:24:08,756 --> 00:24:11,996 Speaker 1: she's like, yeah, it's just life, Like that's I don't 344 00:24:12,076 --> 00:24:18,036 Speaker 1: see any sort of discernible pattern here except like your you. 345 00:24:18,876 --> 00:24:21,356 Speaker 1: In what ways does that make you feel good? In 346 00:24:21,396 --> 00:24:24,076 Speaker 1: what ways does that make you feel bad? I think 347 00:24:24,076 --> 00:24:27,076 Speaker 1: it actually feels bad because I feel like there's this 348 00:24:27,156 --> 00:24:31,356 Speaker 1: collection of challenges and if they're not all talking to 349 00:24:31,396 --> 00:24:35,276 Speaker 1: each other and they're all these sort of discreet issues, 350 00:24:35,556 --> 00:24:38,916 Speaker 1: then it's like it just makes it harder to think 351 00:24:38,956 --> 00:24:43,076 Speaker 1: of how to adjust to them or how to reconcile 352 00:24:43,836 --> 00:24:47,836 Speaker 1: with the ways that they have impacted my life. I 353 00:24:47,876 --> 00:24:52,756 Speaker 1: think that being able to have word for something other 354 00:24:52,796 --> 00:24:55,516 Speaker 1: people will give you the word. The word is usually 355 00:24:55,556 --> 00:24:59,996 Speaker 1: like difficult, or the word is, you know, a pain 356 00:25:00,036 --> 00:25:03,396 Speaker 1: in the ass, or the word is picky, or there's 357 00:25:03,396 --> 00:25:05,196 Speaker 1: like a whole bunch of words that people will give 358 00:25:05,236 --> 00:25:10,716 Speaker 1: you and rigid, intractable, like in flat ball, and so 359 00:25:10,796 --> 00:25:13,596 Speaker 1: it's it's nice to have a word that you can 360 00:25:13,676 --> 00:25:17,996 Speaker 1: give back and be like, actually, I'm autistic. So that's 361 00:25:18,036 --> 00:25:20,516 Speaker 1: that's the problem with it being a no. It's like 362 00:25:20,596 --> 00:25:24,636 Speaker 1: you don't get the relief of having a word that 363 00:25:24,196 --> 00:25:28,556 Speaker 1: can kind of like clear out the other words. At 364 00:25:28,556 --> 00:25:30,956 Speaker 1: this point, I think we're just stalling here, but Hannah 365 00:25:30,996 --> 00:25:32,916 Speaker 1: is trying to keep us on task. What if it's 366 00:25:32,916 --> 00:25:36,196 Speaker 1: a yes? Oh what if it's a yes? I don't know. 367 00:25:36,316 --> 00:25:38,116 Speaker 1: I don't actually don't know. I mean, I feel like 368 00:25:38,156 --> 00:25:41,756 Speaker 1: a little bit choked up even thinking about that. I'm sorry, 369 00:25:41,796 --> 00:25:45,116 Speaker 1: I'm distracted by my dog who is nuzzling even further 370 00:25:45,676 --> 00:25:49,436 Speaker 1: into your lap. Okay, but I mean, how I'll feel, 371 00:25:49,436 --> 00:25:51,436 Speaker 1: I have no idea. I don't know how to anticipate that. 372 00:25:51,516 --> 00:25:53,396 Speaker 1: I mean, we've been talking about it for so long, 373 00:25:53,436 --> 00:25:56,196 Speaker 1: and I really, I honestly don't know. So we're gonna 374 00:25:56,236 --> 00:25:59,196 Speaker 1: open this, but first, just name a couple of things 375 00:25:59,236 --> 00:26:01,436 Speaker 1: you might feel if it's a yes, this is a 376 00:26:01,516 --> 00:26:06,876 Speaker 1: lightning round, Lauren, you are officially diagnosed as autistic. That 377 00:26:06,956 --> 00:26:11,836 Speaker 1: I don't want to do that really anxiety like fear 378 00:26:12,236 --> 00:26:15,956 Speaker 1: right now you just answered them. You did it, A 379 00:26:15,996 --> 00:26:18,596 Speaker 1: little bit of relief, some anxiety like do I want 380 00:26:18,636 --> 00:26:22,396 Speaker 1: to tell anybody? Some shame, but also some like elation 381 00:26:22,436 --> 00:26:24,316 Speaker 1: because it's nice to have an identity, like what are 382 00:26:24,316 --> 00:26:27,156 Speaker 1: all the things? I mean, you just named all of them, 383 00:26:27,196 --> 00:26:29,276 Speaker 1: and that actually is very helpful, so I don't have 384 00:26:29,396 --> 00:26:35,236 Speaker 1: to do it, Okay, I actually feel like a little 385 00:26:35,276 --> 00:26:46,396 Speaker 1: bit sick about doing this actually, like A don't Yeah, 386 00:26:46,876 --> 00:26:59,956 Speaker 1: I don't think I can actually open it, can I? 387 00:26:59,956 --> 00:27:03,836 Speaker 1: I mean, maybe it wasn't like I didn't. Maybe it 388 00:27:03,876 --> 00:27:06,716 Speaker 1: wasn't that hard for me to not open it last 389 00:27:06,796 --> 00:27:10,356 Speaker 1: night because I didn't. I didn't really want to open it. 390 00:27:14,636 --> 00:27:23,836 Speaker 1: I didn't actually think I would feel like bad. I 391 00:27:23,956 --> 00:27:26,236 Speaker 1: really didn't like I thought it would just like open 392 00:27:26,276 --> 00:27:29,076 Speaker 1: the email, read it. It's fine, It's like no big deal, 393 00:27:29,156 --> 00:27:41,916 Speaker 1: Like it's like not fine. I think I probably have 394 00:27:41,996 --> 00:27:50,516 Speaker 1: to open it myself though, don't. I M fuck, where's 395 00:27:50,596 --> 00:27:55,076 Speaker 1: my autism support dog? I got it together enough to 396 00:27:55,196 --> 00:27:59,276 Speaker 1: click on the email. Oh what use this link to 397 00:27:59,356 --> 00:28:08,636 Speaker 1: download your screening assessment document? Oh god, what, I can't 398 00:28:08,636 --> 00:28:13,836 Speaker 1: read all the words? Just click huh, just click it. 399 00:28:14,436 --> 00:28:16,596 Speaker 1: I can't just put in an email because then, like 400 00:28:16,756 --> 00:28:21,516 Speaker 1: people will see it had to downlook what I've literally thought. 401 00:28:21,516 --> 00:28:23,636 Speaker 1: I would just open an email and it would just 402 00:28:23,676 --> 00:28:30,676 Speaker 1: be like budding. It would be a big yes, it 403 00:28:30,716 --> 00:28:37,956 Speaker 1: would just say you're autistic. Oh what? Oh what is this? 404 00:28:38,756 --> 00:28:43,636 Speaker 1: Who uses pages? I opened the attachment and I just 405 00:28:43,876 --> 00:28:47,076 Speaker 1: couldn't figure it out. It was a total word salad 406 00:28:47,116 --> 00:28:50,116 Speaker 1: to me, Like what was I even reading? Oh? My 407 00:28:50,276 --> 00:28:53,956 Speaker 1: fucking god, are you kidding me? It's like nine hundred 408 00:28:53,996 --> 00:28:58,556 Speaker 1: pages long. That's only one thing that you need to 409 00:28:58,596 --> 00:29:52,116 Speaker 1: read For now. I don't see anything. Look again, You've 410 00:29:52,116 --> 00:29:55,516 Speaker 1: been listening to The Loudest Girl in the World. It's hosted, written, 411 00:29:55,636 --> 00:29:59,356 Speaker 1: end executive produced by me Lauren Obert. Our senior producer 412 00:29:59,476 --> 00:30:03,996 Speaker 1: is writer. Also our associate producer is David John. Sophie 413 00:30:03,996 --> 00:30:07,556 Speaker 1: Crane is our showrunner and senior editor. Jake Gorski is 414 00:30:07,596 --> 00:30:11,476 Speaker 1: our mix engineer. Music composed by my autistic Kiwee Pale 415 00:30:11,756 --> 00:30:15,796 Speaker 1: the Inimitable Lady Hawk. Our artwork was created by the 416 00:30:15,836 --> 00:30:19,876 Speaker 1: autistic illustrator Loretta Ipsum. The show was fact checked by 417 00:30:19,956 --> 00:30:24,556 Speaker 1: Andrea Lopez Cruzado, and our autism consultant is Sarah Cappett. 418 00:30:24,996 --> 00:30:35,916 Speaker 1: Our executive producers are Mia Lobell and Leta Mullad. A 419 00:30:35,956 --> 00:30:38,396 Speaker 1: lot of the research in this episode came from Steve 420 00:30:38,556 --> 00:30:42,796 Speaker 1: Silberman's book NeuroTribes The Legacy of Autism in the Future 421 00:30:42,796 --> 00:30:46,796 Speaker 1: of Neurodiversity, as well as the book In a Different Key, 422 00:30:47,236 --> 00:30:51,076 Speaker 1: The Story of Autism by John don Van and Karen Zucker. 423 00:30:51,596 --> 00:30:55,996 Speaker 1: John and Karen also hosts a podcast called Autism's First Child, 424 00:30:56,276 --> 00:31:09,876 Speaker 1: so check that out. Thanks for listening, friends,