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cl0udpup · 1 year

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Ritvo Autism Asperger Diagnostic Scale–Revised (RAADS–R)

The RAADS-R is a self-report questionnaire designed to identify adult autistics who “escape diagnosis” due to a subclinical level presentation.

The response options are: True now and when I was young True now only True only when I was younger than 16 Never true

My Score

Total - 145 Language - 6 Social relatedness - 63 Sensory/motor - 44 Circumscribed interests - 32

Scoring

All scores of 65 or higher are indicative of autistic traits. The higher the score, the more autistic traits you have.

- No neurotypical who took the test scored above the autism threshold. - Only 3% of the autistic group did not score over 65.

25-49: You are not autistic 50-64: Some autistic traits, but likely not autistic 65-89: The minimum score at which autism is considered 90-129: Stronger indications of autism, although non-autists may score as high 130-159: The mean score of autistic people; strong evidence for autism 160-226: Very strong evidence for autism 227: The maximum score autistic people acquired

Mean RAADS-R scores

Autistics

Total - 134 . Language - 11 . Social relatedness - 68 . Sensory/motor - 33 Circumscribed interests - 28

Neurotypicals

Total - 26 . Language - 2 . Social relatedness - 5 . Circumscribed Interests - 5

My responses

1. I am a sympathetic person. Always true. I am very sensitive to others strong feelings. I don’t always agree with, or understand why someone feels the way they do, but I feel for them, and can relate to the feeling itself (even if it was another context for me.)

2. I often use words and phrases from movies and television in conversations. Yes. I’m obsessed with film, always have been. It’s an art form that is easily translated into every day situations.

3. I am often surprised when others tell me I have been rude. Sometimes I have done things people have gotten mad at or said is inappropriate. Less now as an adult, as I try really hard to learn from those situations. I hate when someone is mad at me.

4. Sometimes I talk too loudly or too softly, and I am not aware of it. I have been told I am too loud at times.

5. I often don't know how to act in social situations. Social situations aren’t inherently comfortable for me, but I have learned ways to cope.

6. I can 'put myself in other people's shoes.' Vividly. Empathy and understanding others so they feel less alone is a strong value of mine. I read lots of memoirs, articles, watch documentaries and films, listen to podcasts, and interact with others online so that I can have a deeper understanding of what it’s like to be someone who isn’t me.

7. I have a hard time figuring out what some phrases mean, like 'you are the apple of my eye.' If I haven’t heard it before, and there isn’t enough context. I’ve heard this specific phrase as long as I can remember, so I don’t think this is a good example. Usually I go off the tone of the situation and gloss past terms I am unaware of. Sometimes I find out it means something totally different, but it’s not usually a huge deal.

8. I only like to talk to people who share my special interests. This Q is difficult for me. I am very isolated these days, and barely talk to anyone besides my partner, and people in same communities as me online. So, I guess, yes? I have chosen not to seek out conversation with people who don’t share my interests.

It’s hard because I’m still learning what’s the difference between shared community (like neurodivergency, mental illness, disability - the communities I spend time in online,) and a special interest. Does it need to be more specific than that? My socializing has always centered around a specific interest. I have difficulty and disinterest in socializing if it’s not centered around the thing we have in common.

9. I focus on details rather than the overall idea. I get stuck on details, yes.

10. I always notice how food feels in my mouth. This is more important to me than how it tastes. This question sucks because yes, I always notice it, but Idk if it’s more important than how it tastes? Well, maybe it is, because thinking of examples, I love the flavor of apples, but if I bite into it and it’s dry, feeling like it’s sapping the moisture out of my mouth, I can hear the squeak on the peel, no I can’t do it.

11. I miss my best friends or family when we are apart for a long time. Kinda. I’m fine with having non-romantic relationships that are long distance. I’ve only met my best friend since childhood a few times in person and we still talk every day.

12. Sometimes I offend others by saying what I am thinking, even if I don't mean to. Yes, but again, I have learned to essentially rehearse what I say in my head before I say it, to avoid this. I keep a lot to myself.

13. I only like to think and talk about a few things that interest me. I have gotten obsessed with sooo many things over the years, so there are a lot of things that interest me. I had a period of time where I was obsessed with being knowledgeable in all areas (like, a renaissance man lol,) so I can relate in convos and sorta know what I’m talking about.

I don’t really like talking about things I’m not interested in (does anyone?) and I definitely don’t like thinking about stuff I’m uninterested in. That definitely made school impossible.

14. I'd rather go out to eat in a restaurant by myself than with someone I know. Absolutely not. I’m terrified of getting into a scary situation when I’m alone.

15. I cannot imagine what it would be like to be someone else. As I said, understanding others point of view is important to me.

16. I have been told that I am clumsy or uncoordinated. Lately my fine motor skills have gotten worse.

17. Others consider me odd or different. Ya.

18. I understand when friends need to be comforted. Yes, I try to know what to say or do to help a person feel safe.

19. I am very sensitive to the way my clothes feel when I touch them. How they feel is more important to me than how they look. Generally. I love fashion/style, so I like looking cute, but I really only wear athleisure clothing.

20. I like to copy the way certain people speak and act. It helps me appear more normal. I haven’t like, copied a specific person’s mannerisms, but I have studied body language, and monitor my own to fit the situation.

21. It can be very intimidating for me to talk to more than one person at the same time. Casual conversation, no. If this means like, public speaking, yeah that was really hard as a kid. I’ve come up with ways to get through it as an adult.

22. I have to 'act normal' to please other people and make them like me. Basically.

23. Meeting new people is usually easy for me. I get anxious, but I go over every situation in my head before it happens.

24. I get highly confused when someone interrupts me when I am talking about something I am very interested in. Yes, but I’m used to being interrupted so I usually just shut up. It’s hard not to take it personal.

25. It is difficult for me to understand how other people are feeling when we are talking. I guess? I always ask and clarify.

26. I like having a conversation with several people, for instance around a dinner table, at school or at work. Not really.

27. I take things too literally, so I often miss what people are trying to say. Yeah sometimes.

28. It is very difficult for me to understand when someone is embarrassed or jealous. It can be hard for me to understand if someone doesn’t feel the same way as me in general, if it’s about something involving strong emotions.

29. Some ordinary textures that do not bother others feel very offensive when they touch my skin. Apparently so!

30. I get extremely upset when the way I like to do things is suddenly changed. I really don’t like last minute changes. I go over how to keep things running smoothly in my head, and do them a certain way for a reason. If there is a change, I need time to make adjustments.

31. I have never wanted or needed to have what other people call an 'intimate relationship.' I have always been obsessed with being in a relationship.

32. It is difficult for me to start and stop a conversation. I need to keep going until I am finished. Yeah if we don’t finish it now, just forget it. If there’s not gonna be time for the whole thing, let’s plan to talk at x-o’clock. This was a lot harder for me in my teens and 20s. I struggled with moving past an issue, it needed to be addressed immediately or I couldn’t move forward.

33. I speak with a normal rhythm. Never been told otherwise.

34. The same sound, color or texture can suddenly change from very sensitive to very dull. I don’t really understand this question, but I don’t think so.

35. The phrase 'I've got you under my skin' makes me uncomfortable. lol I mean it’s gross, but it doesn’t bother me.

36. Sometimes the sound of a word or a high-pitched noise can be painful to my ears. Yes, I have to adjust my environment a lot, or cover my ears, or ask someone not to do something.

37. I am an understanding type of person. Yes, I have found it important to be laid back when possible.

38. I do not connect with characters in movies and cannot feel what they feel. I connect deeply with characters, and find film a great way to communicate my experiences to others.

39. I cannot tell when someone is flirting with me. I am paranoid about this, so I can usually tell.

40. I can see in my mind in exact detail things that I am interested in. Yes I love visualizing and fantasizing.

41. I keep lists of things that interest me, even when they have no practical use (for example sports statistics, train schedules, calendar dates, historical facts and dates). I love lists. They help me make sense of the world and remember things.

42. When I feel overwhelmed by my senses, I have to isolate myself to shut them down. Absolutely.

43. I like to talk things over with my friends. Yes I need help understanding if what I’m feeling is reasonable and making decisions.

44. I cannot tell if someone is interested or bored with what I am saying. I guess not, cuz I constantly try to give people an out by leaving before I’m asked to leave, or keeping the convo focused on what the other person wants to talk about. It’s like my aversion to being rejected is stronger than my aversion to being bored.

45. It can be very hard to read someone's face, hand and body movements when they are talking. I try to pay a lot of attention to these things.

46. The same thing (like clothes or temperatures) can feel very different to me at different times. Yeah I am like always uncomfortable.

47. I feel very comfortable with dating or being in social situations with others. It depends.

48. I try to be as helpful as I can when other people tell me their personal problems. Yes I like being able to help people.

49. I have been told that I have an unusual voice (for example flat, monotone, childish, or high-pitched). No but people say I laugh too much lol.

50. Sometimes a thought or a subject gets stuck in my mind and I have to talk about it even if no one is interested. Yes I’m very curious and can go down rabbit holes easily.

51. I do certain things with my hands over and over again (like flapping, twirling sticks or strings, waving things by my eyes). Always messing with something, whether it be examining or picking at my fingers, rubbing fabric from my clothes between my fingers, pulling at my eyebrows, rubbing my hands together... I can’t really sit still and quiet.

52. I have never been interested in what most of the people I know consider interesting. I usually socialize based on a shared interest, and keep everything else to myself.

53. I am considered a compassionate type of person. Yes I care a lot.

54. I get along with other people by following a set of specific rules that help me look normal. I try to be likable, and I worry more about others needs than my own.

55. It is very difficult for me to work and function in groups. Yeah it’s frustrating.

56. When I am talking to someone, it is hard to change the subject. If the other person does so, I can get very upset and confused. I prefer knowing what to expect and having structure (let’s do/talk about this thing, okay wanna do/talk about something else now?)

57. Sometimes I have to cover my ears to block out painful noises (like vacuum cleaners or people talking too much or too loudly). Yeah the world is really annoying.

58. I can chat and make small talk with people. Most people love to talk about themselves, so if I ask questions, it’s easy. Don’t ask me about me though lol.

59. Sometimes things that should feel painful are not (for instance when I hurt myself or burn my hand on the stove). So I am told. Piercings and tattoos don’t bother me. I get allergy shots and every time I mention it, people say it must hurt, but it’s a non-factor for me. And not to mention I used to SH...

60. When talking to someone, I have a hard time telling when it is my turn to talk or to listen. It’s kinda like you have to be fast to be able to get a word in.

61. I am considered a loner by those who know me best. I love being alone and doing my own thing, but it’s not socially acceptable, and other people need me, and it’s important to have connection, so I make a conscious decision to. And barely anyone knows me very well lol.

62. I usually speak in a normal tone. Sure I think so.

63. I like things to be exactly the same day after day and even small changes in my routines upset me. As long as I have decided on these changes myself, it’s fine. If it’s something like, my partner is randomly off work and now I have to adjust my day to not having all my time to myself, it’s hard.

64. How to make friends and socialize is a mystery to me. I know how to, I just don’t really want to. IRL, that is. Online friends are great bc they have way less expectations.

65. It calms me to spin around or to rock in a chair when I'm feeling stressed. Yes, rocking soothes me. I spin when I’m happy.

66. The phrase, 'He wears his heart on his sleeve,' does not make sense to me. It does because I looked it up online many years ago and relate to it.

67. If I am in a place where there are many smells, textures to feel, noises or bright lights, I feel anxious or frightened. It depends. Some things are more tolerable than others, and I can often prepare myself with accommodations. Other than that, I can’t stand it.

68. I can tell when someone says one thing but means something else. Not always. I usually ask to clarify.

69. I like to be by myself as much as I can. Yes, it’s more interesting and less to worry about.

70. I keep my thoughts stacked in my memory like they are on filing cards, and I pick out the ones I need by looking through the stack and finding the right one (or another unique way). No filing card memory for me, and I don’t know what “another unique way” is. This question is going over my head.

71. The same sound sometimes seems very loud or very soft, even though I know it has not changed. The more over or understimulated I am, my senses adjust.

72. I enjoy spending time eating and talking with my family and friends. Yes as long as I can leave when I’m ready.

73. I can't tolerate things I dislike (like smells, textures, sounds or colors). I sure can’t.

74. I don't like to be hugged or held. I love it when I consent to it.

75. When I go somewhere, I have to follow a familiar route or I can get very confused and upset. No, I trust GPS.

76. It is difficult to figure out what other people expect of me. Yes, expectations often don’t line up! I have grown to be very up front about this, and just ask out right, rather than deal with disappointment.

77. I like to have close friends. Not really. I like having my partner. Most friends I’ve tried to have have a different idea of what they want/expect out of a friend.

78. People tell me that I give too much detail. No one ever told me that, but I catch myself doing it now (constantly like, ok side note, sorry for the tangent!)

79. I am often told that I ask embarrassing questions. No.

80. I tend to point out other people's mistakes. Yes until someone told me it hurt their feelings and I started noticing myself doing it. Now if I need to tell someone so that we can adjust for the future, I try to be a lot more tactful.

#autism #autism assessment #autism test #raads-r #raads r #raads #self diagnosis #self dx #self diagnosed autism #autistic #possibly autistic #probably autistic

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nightbunnyusagi · 5 months

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I am 18 and self-diagnosed as autistic. I am wondering what the process for a late-diagnosis is like.

How did you start the process? Did you ask a doctor or a therapist?

How long was the waitlist?

How long did the actual process take?

Did you have to travel for the diagnosis?

Was it expensive? How much did you personally have to pay?

Was it required to have your family involved in the process? Did you do it by yourself?

Hello! I'm sorry it took me so long to answer.

Hm, I believe this will be a rather long answer. But as a disclaimer, I'm not in the US, so the process might vary a lot.

As I entered adult life and everything was getting progressively worse and, as consequence, my mental health declining, I started by raising the possibility with my therapist (that I had already been seeing for 4 years) and then scheduling an appointment with a psychiatrist that happened to be specialized in autism (it was an insurance doctor, so I could've not been that lucky). In my country there is not really a waitlist if you're using private health care instead of public. So I just had to see the doctors availability, which was in two months or something like that. I also live in a big city with many available doctors, so I didn't have to travel.

We had a few sessions the following months (my insurance only covered one psychiatrist appointment a month, so it took a while) talking. Yes, he had to talk to my family. At first he talked to my father, asked him questions about my childhood and expanded. After those sessions, autism was ruled out and I was diagnosed with social anxiety and referred to further ADHD testing, which took another good 6 months with a neuropsychologist.

I was diagnosed with ADHD-C and started medication. However, as the months passed, things didn't get better like I had hoped. My therapist said she thought it made sense for me to have autism and said I should ask my psychiatrist to give it another try on further testing. Which I did.

More testing, more questions, more talking and, this time, he talked to my mother, who was more involved in raising me than my father, asking her the same questions he did to my father. I was then diagnosed with autism as well.

So, in total, the whole process from the moment the question was raised took around two years. Which, yes, sounds like a lot, but it's only a fraction of my life and I think it was worth it, because I also feel like the doctors were worried in properly understanding my issues rather than just giving me a paper and telling me to leave.

Although I raised the subject with my therapist, only a psychiatrist or neurologist can diagnose you, as that's their study area. And it's very complicated to do it without getting family involved. I did look for help on my own, initially, but I had to get family involved because, as early years are very important in neurodevelopmental disorders, I can't remember some aspects of my childhood that my mother, for example, can. Those were key memories to understand when the symptoms started (which is very important, because symptoms starting late in life can mean other disorders and not autism, with different treatment).

I've heard a lot of people complaining about ambiguity or weird phrasing of diagnostic questionnaires, but I was told this is on purpose, because the doctor applying them is evaluating your reactions and understanding of the questions as well. They have experience with multiple patients and understanding on how to adapt as they go in order to meet the patient's specific needs. That's why professional diagnosis is advised: they have experience, diagnostic and evaluation tools that non-doctors don't have.

#usagi speaks #autism #actuallyautistic #actually autistic #late diagnosed autistic #autistic spectrum #autism spectrum #autism spectrum disorder #autistic #autistic life #neurodiverse #neurodivergent #neurodivergence #neurodiversity #actually neurodiverse #adhd #actually adhd #adhd life

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mrknucklesmcchucklehead-blog · 6 years

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I was 35 when I discovered I'm on the autism spectrum. Here's how it changed my life. by Zack Smith on January 29, 2016

"Do you hate crowds, especially at supermarkets and restaurants?" I avoided eye contact, which I knew I wasn't supposed to do. "Yes." If Dr. P. noticed, she was too busy looking at the questionnaire to let on. "Do you tend to repeat heard words, parts of words, or TV commercials?" I immediately flashed back to middle school, randomly repeating such phrases from TV as, "I don't think so, Tim," from Home Improvement. I was tempted to respond that way this time. Instead, I just replied with another, "Yes." "Do you have trouble sustaining conversations?" "Yes." "Is your voice often louder than the situation requires?" "Yes." "Do you find yourself resistant to change?" "Yes." "Do you have restricted interests, like watching the same video over and over?" "Yes." "Did you start reading and/or memorizing books at an early age?" Eye contact suddenly became much, much easier. "Wait — isn't that a good thing?" "It is. But did you do that?" I went back to boring a hole in the carpet with my eyes. "Yes." "Have you ever picked up and smelled random objects, like toys when you were younger?" "That's a sign?" "Sometimes. Did you do that?" "...yes." I wanted to puke. After a few more questions, she did some totaling. "Well," she finally said, "it's likely you have ADHD and social anxiety disorder, and you're on the autism spectrum." I slumped back into the overstuffed chair. "Great," I said. "Triple threat." I was 35 years old. There are, according to the Autism Society of America, 3.5 million Americans with autism spectrum disorder, approximately one in every 68 births. Based on reports compiled by the Society, the prevalence of autism has increased 119.4 percent just from 2010 to 2014. Courtesy of Lydia Brown and the Autism Self-Advocacy Network We’ve called autism a disease for decades. We were wrong. The research linking autism to vaccines is even more bogus than you think The errors — and revelations — in two major new books about autism It's not that more autistic people were suddenly being born. It's that doctors knew what to look for. A Danish study published in January 2015 suggests that diagnoses of autism are more frequent because of a broadening of diagnostic criteria over the years, meaning there could be generations of people with autism spectrum disorder who were never diagnosed. I knew, on some level, that I was autistic by the time I was in fifth grade. It wasn't because of Oscar winner and box office sensation Rain Man, which I was too young for; it was, of all things, a Baby-Sitters Club book called Kristy and the Secret of Susan, where one of the babysitters tends to an autistic girl. I don't recall all the details, but I do remember reading the book and asking my mom if I was like this, if it was why I needed "curriculum assistance" classes or why I'd been pulled from preschool and sent to "Project Enlightenment," an ultra-structured children's program downtown. Mom assured me I was not like that. Susan never spoke, and that wasn't me, was it? I moved on. I was already neurotic about reading "girls' books." By the time I reached college in the late 1990s, a new term had become a buzzword: Asperger's syndrome. I wondered if that was what I had. It explained so much — the obsessive memorizing of TV show trivia, the absolute discomfort at bars, clubs, and parties, the way I'd tune out most classes or social situations. Again, I was assured by my parents and friends who knew people with autism — that wasn't me. I had empathy! And I was doing well in school, I just needed to relax a little. In retrospect, they seemed more worried about how worked up I was over this than the possibility of an actual diagnosis. There's a stigma attached to autism that leads many families to avoid a diagnosis. But in attempting to diagnose yourself, it can feel like the things that make you unique are aspects of some sort of affliction, one that is permanent and incurable. A few years later, a good friend of mine was diagnosed with Asperger's. Then he told me he thought I exhibited some symptoms as well. I freaked. I had finally started to feel "normal." I had a job, I was finally comfortable with things like driving and calling up strangers for interviews — I was just a "late bloomer!" I broke down and told him I still cared about him, that I didn't see him differently, but that I didn't have what he had! I was finally growing up, I said. I didn't have some incurable disorder that separated me from everyone else. But I worried. Friends didn't quite know what to say when I brought up the possibility, often in tears and just short of hysterics. "You're just you," they'd say. Mom and Dad were practical: "Well, what if you are? What good does it do you to put a label on yourself?" They weren't being mean. They reminded me, over and over, that I was "doing well." They'd already seen me fall into periods of depression and nonproductivity when I was out of school and out of work, and didn't want me to return to that place. I'd pulled myself out of those spirals before they became too serious. But if a doctor told me I'd never be "normal," that my strangeness was something pathological, would that be the excuse I needed to turn into a complete lump? I was just one of those people who did "better" when I was busy, when I had structure. I just needed motivation. That was all. Eight more years passed. Asperger's became a fear, a phantom, and most of all an excuse. The idea that I might have this "condition" lurked in my mind. It was why I messed up, the nuclear option. If someone got upset with me because I didn't understand something or missed some hints they were trying to give me, I had, "Uh, I might have Asperger's" ready. It broke up at least one relationship. It prevented several more from happening. I was in a strange place. By that time, I'd made good connections — even friendships — with a wide variety of creative people. But other parts of my life felt paralyzed. My creative work was stalling. Setting and keeping any kind of schedule for myself resulted in overstuffed calendars and quick burnout. There were all the times I'd walk away from an encounter with someone new with the overwhelming feeling I'd done something wrong and had no idea what it was. If someone did get mad at me, I'd obsess over it, frozen in a moment of shame and self-hatred long after the other person had let it go. If I could succeed without the pills, that was proof that I'd "won"I considered therapy. But good cognitive therapists were expensive, and it seemed wasteful to potentially drain what little money I'd saved trying to quell what I told myself were such minor neuroses. Surely I could just power through my own problems. In the past, times like these usually ended when I had enough work — school, employment, personal projects — to keep my mind busy, unable to obsess over small things and let myself get "nibbled to death by ducks," as one editor put it. Ultimately, I persuaded my doctor to prescribe me some generic Zoloft. My parents were terrified I was going to have the miscellaneous "suicidal thoughts" the prescription warned about. I didn't, but it was a mixed bag. On the one hand, I felt a bit calmer and had more luck with work and dating. On the other hand, I still faced problems with depression, falling asleep in the middle of the day, keeping an irregular schedule. I'd been dieting for the past year and change, but now I had trouble taking and keeping weight off. Worst of all was that I couldn't feel excited on almost any level — I'd sit through TV shows and movies like a stone. I rarely felt attracted to girls. When I kissed one, it was like kissing my own hand. There was no sensation, just motions. Zoloft, it seemed, could get me a second date but didn't make me a lot of fun on the third. I started skipping pills or going off my prescription for a while entirely, saving a month's refill so I could use it if I knew I had a stressful period coming up. Inside my brain, the relief at not having to face "judgment" was twisted up with self-hatred and fear, along with a perverse sense of defiance. If I could succeed without the pills, that was proof that I'd "won." When I went off the stuff, it felt like second puberty — I'd go from clean-shaven to Wolfman Jack in a week. I felt excited again. I also felt like I was on a toboggan, headed down a snowy hill, accelerating faster and faster toward a brick wall. And I couldn't get off, because I liked the feel of the rush. Cleaning out my email folder, or seeing old social media posts on Timehop, it's amazing how many times I made the same complaint over and over: I needed to get something finished, or I needed a new project. I needed to get out of the house more, to spend more time around people, to stop being so hard on myself. Something needed to change in my life, or I needed to change in some way. I said so over and over, but I didn't know how. 10 things I want to teach my autistic son before he goes to college In January 2015, I started what I knew was going to be a stressful period. I was teaching a volunteer course for retirees once a week, taking a graduate course twice a week, and taking shifts at a used toy shop other days of the week, on top of my freelance writing and creative work. It was a lot, but I knew I could handle it. It took exactly two weeks for it all to collapse. Exactly one year ago today, I showed up for a shift at the used toy shop and was promptly fired. I'd been there two years, I was told, and still had no sense of what to do when they didn't explicitly tell me. I had all these other gigs writing and teaching, they said, and this clearly wasn't a priority. Worst of all, customers had complained: They preferred not to come in when I was behind the counter, ready to chat their heads off. Fridays, when I worked, used to guarantee the company a few hundred dollars of retail at least, and now there were records of multiple Fridays with no sales at all. I was costing my boss money because people didn't want to be around me. I'd failed at what was a fairly easy job because I was me. Because I wasn't fit to be around other people. My parents were due to arrive for a visit in two hours. I went home and felt all the symptoms that had hit me in the past take over: crying jags, nausea, coughing fits. I knew I wasn't sick; these symptoms were all in my head. But I didn't know how to turn them off. When my mom and dad arrived, they were understanding. But I told them I couldn't go on like this. I needed to get therapy and get on medication again, this time prescribed by a mental health professional. Research was done. Dr. P. was recommended as a specialist in the area, good at diagnosing spectrum disorders and helping people organize their lives. A few weeks later, I was answering questions about whether I picked up and smelled toys as a child. Decades after I'd begun diagnosing myself, it was official. But somehow I didn't feel "labeled." That sense that I was "wrong," that I was somehow deficient, wasn't there anymore. Instead, I finally understood the areas where I had problems, and why I had those problems. Now I could work on them. The psychiatrist Dr. P. sent me to said that we could try Strattera, the ADD medication I'd attempted in college, in conjunction with Prozac. Tony Soprano and "Here comes the Pro-Zack" jokes flashed through my head. The insurance company rejected Strattera, but they told the psychiatrist I could do Adderall and see if it worked. "If you have a bad reaction, we can apply for Strattera again!" the psychiatrist said, cheerful. It was a lovely thing to know I was taking a medication with the expectation that I would have a bad reaction to it, but it turned out I didn't. I could listen without feeling an absolute, overwhelming need to blurt something outThe first month was rough. I'd wake up throughout the night, an odd change from wanting to sleep all day. Instead of eating whenever I got stressed or anxious, I wasn't hungry, something I wouldn't realize until early afternoon, when the dizzy spells kicked in. For the first time in who knows how long, I found myself doing things like getting up at the same time every day and eating breakfast. Weird. Other things stuck around. The nervous coughing fits I developed with my firing continued, but a friend noted that they seemed to vanish when something held my attention. When they happened again, I'd find something to focus on, like a song or a TV show or something to read. Eventually they vanished, and when I would cough nervously about something I found I could overcome it right away. Little things became easier, too. Arguments with other people didn't stay in my head months after the issue had been resolved, reminders that I could push other people away. I started dating more, and if it didn't work out, I was able to move on with some new understanding. Errands were done. Garbage got taken out. Annoying forms were filled out, instead of lingering on my desk for months. If I had a weekend with some downtime, I felt an actual compulsion to leave the house or call a friend, instead of simply sitting around. Within a few months, I realized that while I still didn't feel the excitement I could with no medication, I could still enjoy things. I could follow the plots of movies and TV more easily, and when other people spoke, I could listen without feeling an absolute, overwhelming need to blurt something out. I asked Dr. P. what this feeling was. She said I was "content." I kind of liked that. The strangest part of all this has been that being honest about my autism has left other people unfazed. It'd come up, probably because I found some excuse in the conversation to mention it ("Oh, I know what you mean about hating small talk. I'm a little on the spectrum, so..."), and there'd barely be a reaction. I'd watch people's faces. No surprise. No discomfort. And the conversation would go on. Admitting that there were things I didn't understand somehow created a new common ground. No one fully understands everyone else, or the world around them. Many people try to do what I did and "power through" this with false confidence and assertiveness. Sometimes it works. But to know you have a weakness, to acknowledge it, and to treat it as a "what the hell" thing —that's almost more powerful. For most of my life, I'd been afraid discovering I was on the spectrum meant I was cut off from being able to maintain friendships, professional contacts, a romantic connection. It was the wall I was always afraid I was headed toward. But the real wall was my fear, of facing not what I was but who I was. And my parents had been right — I was doing well before. I just needed to find a way to let myself enjoy my successes and build upon them, instead of feeling like defeat was inevitable. In the end, 2015 was perhaps the best year of my life. It wasn't the major stuff — the new job I got teaching, getting accepted full time into the graduate program — it was just that I was able to feel a sense of momentum, of moving forward. Part of me wishes I'd had this happen a decade before. But the experiences I had without therapy and medication helped prepare me for the setbacks I faced, and granted me the maturity to face them. My story isn't typical. The autism spectrum is a broad and constantly redefined place, a frontier of the mind that's still mostly wilderness. The revised definitions of it in the DSM-5just a few years ago are still controversial — it's both easier to diagnose aspects of the spectrum in people and more difficult to determine if a formal diagnosis is necessary, if it's even a "problem." In my experiences I had the benefit of privilege, and of personal choice. No one forced me to get diagnosed or to take medication. I simply reached a point in my life where I felt like I could become a better version of myself if I confronted the areas of my life that seemed to hold me back. I can't say that my life is perfect. I have a great deal I need to accomplish in terms of better dieting, regular exercise, and being more productive in my writing. Some anxieties still hijack my brain, and dating and relationships remain, as they do for most single people, confusing. But I feel like I've learned. And I'm still learning. Learning is all about realizing possibilities in the world around you, and right now those possibilities seem extraordinary. In August 2015, Dr. P explained, slowly and with caution, that she was moving out of state to join a new practice and to be closer to family, so I'd need to change therapists, and that she'd help with the transition. She was relieved when my main reaction was to tell her I understood and congratulate her on the new opportunity. She called me a "success story." "A few months ago, you might have felt ... destroyed by upheaval," she said. "Things change," I replied, and I meant it.

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principlesofdesign · 7 years

Text

Based on Oliver de la Paz’s Autism Screening Questionnaire — Speech and Language Delay

A collection of firsthand accounts of the story of a family.

1. Did your child lose acquired speech?

When he sings, he uses words he will not speak. My son is a musician, weaving together the notes that vibrate in his little throat. From his earliest days, even his cries have been music. I've never loved noise like this. He yells and screams and somehow, to me, everything sounds like art.

2. Does your child produce unusual noises or infantile squeals?

This is my first child. I am the youngest of my siblings and one of the youngest of my cousins. I had never held a baby before him. I never cared about babies before him. I don’t know if he does more or less or just enough. He just is, and I love him, and that is that.

3. Is your child’s voice louder than required?

He has never had an inside voice. If he loves something, you will know it and quickly. You will hear it shouted from the rooftops with a voice bursting with light and joy and enthusiasm. “This is what I love. This is what I will build my world around. This is where my heart is.” When a child says those things so readily, who wastes time criticizing his volume?

4. Does your child speak frequent gibberish or jargon?

He is caught halfway between two languages and speaks neither well. There is nothing wrong with my son, my son who I crossed oceans for, who I ripped my world to shreds for. There is nothing wrong with my son. He is taking his time, enjoying understanding himself while no one else can. He will find his way to us soon.

5. Does your child have difficulty understanding basic things (“just can’t get it”)?

He is two and cannot understand the difference between pictures of different things, keeps reminding me that it's a "book" instead of saying "eagle" and "cabbage", like the children of my husband’s friends. He is three and responds to "give me an answer now" with "answer", and stares at me emptily when I tell him he hasn’t answered the question. He is six and cannot understand why the other children do not like hearing all the facts he knows about the ocean. He is eight and cannot understand why his little sister has more friends than him. He is twelve and does not understand why he is picked last. He is fourteen and does not understand...

Why won’t he understand?

6. Does your child pull you around when he wants something?

My son’s hands are bunched in the back of my father’s shirt, and he follows my father around the house like a little train car, a duckling, a boy seeking direction. He tugs once, twice, thrice, like he is asking a question, but quickly, the question gets lost in his head, like he’s forgotten what he meant to ask. No words are exchanged -- it is a silent carousel, spinning, spinning, spinning.

7. Does your child have difficulty expressing his needs or desires using gestures?

He screams. He screams so much. He screams upon waking and again upon sleeping and I think he is trying to tell me something, but he either can’t or won’t. He cries when I ask him too many questions, his answers coming three or four questions late like he has just finished hearing the first when I am asking the fifth. He is a friendly and nervous child by turns, like there are two people living in his head, one happy and free and joyful and the other terrified of the world before him.

He doesn’t ask for things as much as his sister does.

I wonder whether it’s because he doesn’t want anything or because he doesn’t know how to ask.

8. Is there no spontaneous initiation of speech or communication from your child?

We read his books wrong when the silence has stretched on too long. He has memorized all of his books, will correct us with a soft tug of a shirt sleeve or a few whispered words when a sentence differs from the copy in his head. It is a rope in a snowstorm, the soft lantern light that guides him out of his head and into our world.

“Amma.” He whispers, as if he is telling me a secret. “Barney didn’t say that.”

9. Does your child repeat heard words, parts of words, or tv commercials?

He repeats what I say to him and laughs to himself, like a private joke only he can understand. “Don’ do it.” He cautions himself, while scribbling at his table, and giggles like the heavens have opened up and poured sunlight onto his paper. “Don’ do it, or you’re in trouble. Don’ do it. Timeout.” He lets loose a stream of soft chuckles, and wipes his eyes like he has seen his father doing, when he laughs to the point of tears. There are no tears there. He is just going through the motions, like his life is some extended stage performance that we are here to witness. “Don’ do it.”

10. Does your child use repetitive language (same word or phrase over and over)?

His words run in circles, wearing paths into the carpet of his mind, their feet sinking into the pile. It is a different color where the words aren’t, where the words have never been, where they might never be. His lips find familiarity and will not let go, his teeth biting into every word he knows, every word he loves. He is talking to himself again, a one word conversation, and he is smiling.

11. Does your child have difficulty sustaining a conversation?

He does not listen. Or he does not care to listen. I don’t know which it is, which will hurt more. He hears fine, the doctors say so -- we checked, just in case. He will talk on his terms, on his subjects, on his time, but the moment you take a step in, he pauses. He turns into stone, hard and unforgiving, the brightness draining out of his eyes like water from the sink I used to bathe him in. The son I know disappears behind this sullen, angry monster of a boy who feels interrupted by one word, one thought, one movement of the mouth, and I wonder how many times it will take before he stops trying at all.

12. Does your child use monotonous speech or wrong pausing?

He stops in the middle of a sentence, eyes scanning us for a reaction, as if he is prompting for user input. All my life, I have been fascinated by computers, the way everything is neat and logical and easy. Humans are messy and tragic and complicated, and there is nothing I hate more than drama. I often wondered what a child that was neat and logical and easy might be like, wondered if I might love that child more than their siblings. He is still staring, but takes a deep breath and lets his words flow out again, a flood, an avalanche, a hurricane. I was wrong. I was wrong. I was wrong.

13. Does your child speak the same to kids, adults, or objects (can’t differentiate)?

He is better now, thanks to his sister. She was born and he took to her instantly, surveying her like something curious, something new, something to explore. He copied his father’s cooing, watched and learned and applied his father’s turns of phrase until he’d broken baby talk down into a science. At four and a half, he is still hiding behind other people. People are objects and objects are people, but finally, finally, kids are not adults, and adults are not kids.

Every small victory is worth celebrating.

14. Does your child use language inappropriately (wrong words or phrases)?

He speaks on his terms, with his words and his topics and his sentences. He gets angry, when he’s told he’s wrong, rages like a wildfire that cannot be contained.

“I’m right”, he roars, the crackling of flames hidden in the spaces between his words. “I’m answerin’ the question!”

The flames rise and rise and rise until there is nothing more left to burn.

#writing

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