Late Autistic Discovery – What Happened During My Autism Assessment?

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Transcript

[00:00:00] Hey humans, Lyric here, and today, I want to talk about what happens during an autism assessment, and I’m just going to be sharing what happened during my autism assessment, because obviously I’ve only been through one of those. If you would like to know what that was like, please do stay tuned.

[00:00:51] Do you want to be in the video with me? Maybe? You cute enough! Copper Bug – Copper Bug. Yeah, sit in my lap?

[00:01:08] At the beginning of the diagnostic process, I’m going to give you one recommendation, and that is to find a professional that has experience with and, does diagnose adults. If you go to someone who only works with, only has experienced with, and only has services for children, you are going to be doing yourself a huge disservice, and potentially wasting time and or money. So find someone who knows about adults, most importantly, before you even get going.

[00:01:45] Uh, and depending on where you are in the world, there may or may not be someone in your area who does that. That can be a problem.

[00:01:52] Once I finally found someone that worked with adults, I booked my appointment. I had to book it at least a month in advance, maybe longer.

[00:02:03] That time I spent gathering, and preparing for the appointment gathering notes about my past, why I thought I – could potentially be Autistic.

[00:02:16] Gathering who in my family I could potentially have, as a reference for them to interview, to find out more about how I was growing up.

[00:02:30] I gathered baby videos, and childhood footage. There is a lot of it. I was very lucky in this regard to be a well-documented child. Yay.

[00:02:41] Because autism is a lifelong developmental difference, it is important that the person doing the assessment determine that you have always been Autistic, and so they. Typically, are going to want to interview people, or talk to people who knew you growing up and knew you as a young person.

[00:03:10] I had one family member and one childhood friend. The childhood friend also was someone who was a coworker, who had seen me across many contexts.

[00:03:21] The adult was a caregiver, that had a lot of insight into how I was as a child. I was very lucky to have that, because some people might not have that, and that can make things more difficult.

[00:03:33] Even though I did have pages of prepared notes, that I brought in with me to the assessment, they’re not necessarily going to just go on your word, and what you have to say. They’re going to want to hear from other people, because the diagnosis is actually based on outward observations of Autistic People, so they want to get some of those outward observations that they need for their- their data and their information.

[00:04:02] Another thing that was really helpful for me is, as I said, I had those baby videos and childhood videos. I had videos of myself from when I was like six months old, maybe first brought home from the hospital, to when I was, I think about 11 or so. Nice coverage of of how I was growing up.

[00:04:19] There’s a lot of documentation of things that the person doing the diagnosis would be looking for, which made it even easier to diagnose me, having all of those records.

[00:04:31] Gathering records was definitely step one for me, I feel like this is something that I was very lucky, and privileged, and fortunate, to have access to these resources, that I needed to get diagnosed.

[00:04:43] By the time it was finally the day to go to my first appointment, with the person who would be, potentially, diagnosing me as Autistic, I was ready. I had time to gather all of my notes, and resources, and contact information for people that could potentially be interviewed by the person doing the evaluation.

[00:05:09] And I had 10 pages probably of typed notes with all of the things I was afraid, I would forget. I had a list. I’ve always been a fan of lists and I brought a list with me, naturally, to the appointment

[00:05:28] The person doing the assessment had their own lists. Well, not really lists. They had assessments that they needed me to complete.

[00:05:36] I had been referred for anxiety by my GP and, because I had mentioned autism, they also made that referral, as well. There was an assessment for anxiety and there was an assessment for autism.

[00:05:51] It’s one of those multiple choice questions with five bubbles: “how much do you agree with the following statement” kind of a thing.

[00:05:59] If those things are hard for you, I’m sorry. You’re going to have to stomach a few of those, if you go through this assessment process with a professional. If you did this as a kid, your parents would do it for you but sorry, if you’re an adult, you’re on your own, you’ve got to do the assessment. Take you back to your school years.

[00:06:21] I handed over my pages of typed notes to the person who is doing the assessment and I started filling in my multiple choice bubble questions on these exams.

[00:06:34] When I said “a few” earlier, I was seriously downplaying how many questions there were. It’s a very long, and intense, assessment process.

[00:06:43] Then, after I did all of those assessments, there was an interview with me and the person who was assessing me to see if I might be Autistic, asked me a lot of questions about myself, and probably making all kinds of notes about my thought process and how I was responding to things. That whole appointment took several hours. It was a long, and intense, exhausting appointment.

[00:07:13] From filling out assessments, to handing over contact information of relatives, and friends, and family growing up, and explaining those relationships. Interviews with me, about my life and childhood and development, like I said, reviewing baby footage and then my notes, that I brought with me.

[00:07:33] That took a while, and that’s exhausting. It’s something you definitely want to save up your energy for, and be ready to do. I think I went home and slept after that, if I remember correctly. I remember it being very exhausting, and I remember being very tired when I left that office.

[00:07:54] Then I just had to wait. It was probably two or three weeks between the first appointment and my second appointment.

[00:08:03] In the in-between, the person doing the diagnosis was going to then call my- my references, my family members and my friend, and ask them about how – about how I went about life, in the various areas that they knew me about.

[00:08:21] My family member would know a lot about me as a little kid, and my early issues, that I had in school; and being in special education, and being in gifted and talented, and all of those things.

[00:08:33] Then my friend, who also worked with me, knew about my struggles in high school, and knew about how I was in the workplace, and what issues I had working on a team.

[00:08:48] Digging, and getting into the behind the scenes, and writing a report, based on all of the things that they found out, in talking to these people, that knew me.

[00:09:00] To receive the autism diagnosis, they are trying to evaluate if being Autistic impacts you in your major life occupational areas, such as: Ability to learn, where I had struggles in school. Relationships with other people; and workplace, does this impact your employment and your ability to work?

[00:09:24] These things are looked at through the lens of the medical model. They are really looking at your problems and your struggles, very specifically, to give you a medical diagnosis of autism.

[00:09:38] At the time of my diagnosis, I was struggling, a lot, especially in work. These struggles were starting to have physical impacts on my health.

[00:09:51] My mental health was also in the toilet, at the time, when I was diagnosed Autistic. I was also diagnosed with social anxiety, at the same time as being Autistic.

[00:10:01] Some people don’t believe that I have social anxiety, uh, but I sepend most of my time alone, talking to myself in the room, and I am very afraid of people I don’t know, and I don’t know if people secretly have ulterior motives, and it makes me really nervous to be around other people… so I, definitely, still have social anxiety.

[00:10:26] It is a beast, if I’m honest.

[00:10:32] That’s something else you have to be prepared for, if you’re going in for an autism, or an ADHD assessment, is:

[00:10:38] The possibility of getting additional diagnoses or other diagnoses that you potentially were not expecting. I was not expecting, or ready for a social anxiety diagnosis, and it took me a while to really accept, and understand what that, and the autism diagnosis, meant to me when I did get them.

[00:10:58] My second appointment was easier. Weeks later, after the doctor had had time to talk with everyone, and write a report based on everything we discussed, and the videos they had seen, and all of that… I was handed over this extensive document, with a lot of history, and information I didn’t even know about myself.

[00:11:24] Here’s something that I didn’t know when I was going into this process, is that, I got to see all of the notes, and everything that was said about me, by my family and my friend. So you get to see, really, what other people think of you, and other people’s experience of you is.

[00:11:48] Uh, there were a lot of deep dark familiy secrets revealed to me in that paper. I shredded it in the office shredder at work, because there is so much private and personal information in that thing. Not only about me, but about, you know, my, my parents and things like that, that I just was very uncomfortable with having on this like paper, that could potentially fall into the wrong hands.

[00:12:17] The diagnostic report was, very, very detailed and just, like I said, had so much private, personal information in it.

[00:12:26] That’s why if people are like, “show me your diagnostic summary” – “prove that you’re Autistic”. I’m like, “I will absolutely not show you my paper work!”

[00:12:36] Like, I don’t even have that paperwork. I have a little one-page paper, uh, that has like a summary, but it’s got my dead name on it, so I’m not going to share that either, uh, because it doesn’t have, have my name. I’m Lyric. It doesn’t have that- it doesn’t say Lyric on there. So I’m not going to share either of those things.

[00:12:52] I’m not going to go back and ask for another one. “Hey, it’s been five years. Can I have another paper?” No. I’m not gonna do that.

[00:12:59] The last appointment was basically congratulations, you’re Autistic. Here’s your report.

[00:13:05] I was lucky to have a doctor that recommended some books by some Autistic authors, and I got to read from Autistic voices.

[00:13:12] This doctor was one of those “Oh, there’s nothing wrong with you” doctors, and “you just need to learn about your brain and figure out how to work with it instead of against it” kind of a doctor.

[00:13:22] I’m so grateful for that, because goodness knows, I could have got sent on the path to the dark side, cause my first thought was, “oh, this is what’s wrong with me” And the doctor’s like, “no, no, no, there’s nothing wrong with you. You’re Autistic. Your brain works differently. There’s nothing wrong with you.” like I could have easily spiraled off in that other direction and this blog would not exist, if that would’ve been the case.

[00:13:50] That’s basically it. My diagnostic process was really clean and simple. I got diagnosed by the first mental health professional I saw. It was really quick and easy. I had all the documentation I needed. It was very cut and dry. I’m one of the lucky ones.

[00:14:08] This, this, this- is what it was like for me in this, perfectly ideal scenario, where I found out I was Autistic at 29.

[00:14:16] I hope this was helpful to you, and if it was, please let me know, by giving this video a thumbs up.

[00:14:22] If you are going through this process, or you have gone through this process, I’d love to invite you now, to share your experience with that, if you feel comfortable sharing.

[00:14:31] If you are self identified, you are valid and welcome here too, please feel free to share your experience. Being diagnosed, I feel, is a huge privilege, and there are a lot of reasons why someone may not be able to, or may choose, validly, not to go with getting a diagnosis. If that’s you, I invite you to share, and I open the floor in the comments below.

[00:14:53] Before I go, I just want to say thanks, to the Patreon subscribers, YouTube supporters, and Facebook members, who do the little bit of that monetary subscription, that helped me with things like web hosting, and the transcriptioning software.

[00:15:08] I have a program now, that helps check my grammar, all of these things that help make the blog more accessible, and a higher quality, I wouldn’t be able to afford, without the help of viewers like you. So you really do help make this blog what it is.

[00:15:23] I am eternally grateful. I’m a big believer in gratitude, and I always want to express that to each and every one of you, whether you are here as a subscriber in that monetary capacity, you are commenting and sharing your life experience, showing the diversity in NeuroDiversity, or leaving your feedback, and comments and videos suggestions, and your questions.

[00:15:45] All of this makes this community what it is, so I need you all, and I couldn’t do it without you.

[00:15:51] Thank you so much, for being here. I will see you next Wednesday. Later.

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With gratitude, Lyric

2 thoughts on “Late Autistic Discovery – What Happened During My Autism Assessment?

  1. Hi there 🙂

    Thank you for this post! My experience (I just got my diagnosis this summer) was very, very similar to yours so this was very interesting for me 🙂

    I also have a question – if you prefer not to answer it, that’s absolutely fine: I also have videos of me from age 0-7 but I didn’t think to bring them to the assessment. Would you genereally recommend doing that? Were the videos very useful for the doctors? I was a very verbal child, my diagnosis is what would earlier have been Asperger’s so my family didn’t notice that much when I was little. I’m curious if there would be any clues if someone watched those videos. So if you could elaborate on that a little I’d be really grateful. But like I said: No pressure at all!

    Thanks for your awesome work <3

  2. Hi Lyric! Thank you so much for your vulnerability in sharing this. I was curious about a question/feeling if you have the capacity to answer. I received my diagnosis this past June at age 25. My appointment, however, though it was with a doctor that has previously diagnosed adults with ASD, was only like 45 minutes total and with no other appointment. As you mentioned above, the ability and chance to get a diagnosis is an immense privilege. Do you have any advice / resources on combating the feeling that I faked it? That I somehow fooled the doctor or got a false positive? Or that they didn’t do enough research? Honestly it feels even wrong to have these feelings! You and your work have just been an immense resource, and I wanted to ask! (Also sorry if you’ve done videos on this feeling before and I just haven’t found them yet!)

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