Autism & Neurodiversity Chat – Are All Autistic People Traumatized? – Problems with the Medical Model

Topics YOU requested:

The idea that trauma and autism are so hard to distinguish because society doesn’t make untraumatised Autistics.

The problems with how Autistic people are diagnosed/the limitations of the medical model.

What healthy boundaries are and how to keep them kindly.

Late diagnosis and moving forward after discovering you are Autistic late in life.

Overcoming internalized ableism and loving your Autistic self.

Advocating for your needs as an Autistic Person.

Please submit requests for future topics in the comments below!

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Alrighty. I think we’re really live right now. Here we go. Facebook got this, this engine here. Hang on. Let me figure out how I can see this. There we go. Now I can see comments as they come in, let you give a minute and let people join because whenever you, uh, Go live it sends people a notifications sometimes takes people a few seconds to catch that and see that there’s something going on.

[00:00:36] Um, so I asked earlier this week for requests for topics and to submit questions.

[00:00:45] Hi, Laurel.

[00:00:47] Um, And so I’ve got a few questions, all right. Already piled up and we’ve got some really good topics and requests in the queue already today. And I’ve made myself a nice list to keep me on track for this, hopefully stick together for, um, you know, yeah, an hour tops today, but I’m going to see if I can get through all the questions.

[00:01:08] I don’t know if I’ll get to all of them, but you know, if you have questions as we dive in today, even though I have some pre-prepared, uh, topics ready to go, please feel free to submit your questions as well, because I am monitoring those as I share with you, um, And so we’ve got people joining now.

[00:01:29] So I’ll go ahead and jump in. Uh, the first question was from David and, uh, not, not my partner, David, another David. I’m not going to read last names here on Facebook just to protect people’s privacy, just in case. Um, But David says, “I’d like to see someone cover the idea that trauma and autism are so hard to distinguish because society doesn’t make untraumatized autistics.”

[00:01:55] Uh, and you know, I do have a few thoughts on this one. I think it’s a really great question. I’m glad you brought it up. I’ve kind of been talking about this. Um, but not exactly this in some of my talks that haven’t necessarily been on Facebook. Um, but. What I want to say about, uh, this is, um, it’s not that society does not create on traumatized autistics.

[00:02:21] I truly believe there are autistic people who are not traumatized and they definitely exist. They’re out there. I do think though, that, especially for the autistic people who are my age and older, if we are untraumatized autistics, because the diagnostic criteria, uh, we may be less likely to be diagnosed or discovered as autistic.

[00:02:52] Um, And, you know, there’s a few reasons for this. And the first one being something that I’ve said before is, in my opinion, the medical model of autism is based on an autistic person who is in distress and is struggling. Um, not necessarily autistic person who’s traumatized, but trauma would definitely cause an autistic person to struggle.

[00:03:16] So the medical gatekeepers, you know, the people who autistic people rely on in order to receive the diagnosis, tend to be very unaware of what autistic people in good mental health even look like. And so, you know, that means  until autistic person either has, you know, new demands in life that they can’t keep up with or loses, you know, one or more of their supports they may not be diagnosed.

[00:03:47] Uh, and then when life gets hard and they can’t keep up with what’s expected of them, these autistic autistic people who may have otherwise been missed because of the way the medical model identifies autism might then be discovered. Uh, you know, that was kind of my personal case too, is I had new life demands that I needed to meet and I was pushing myself really hard to do it. And I, it really wasn’t something I should have been pushing myself to, but I didn’t know I was autistic and I was literally making myself sick, pushing myself too hard, you know, square peg in a round hole. Right. You can maybe get the peg in there, but you’re going to ruin the peg.

[00:04:28] Um, you know, I wasn’t doing myself any favors by operating in that way. Um, so that’s my thought on that first, um, comment, because I’ve seen this, um, A lot lately, uh, this discussion happening online. And so that’s my personal opinion on that topic because that’s kind of been a very hot topic.

[00:04:52] Uh, hi, Elizabeth.

[00:04:54] Um, so let me see, I’m looking, I’m watching comments too. Um, Oh wait, did we. Do we go live on? Okay. We did. Okay. It’s on both pages. I wasn’t sure there’s a new engine I’m using to do this live in the back end of Facebook. And it, um, it does a lot of things and I’m learning all the things. So thank you all for your patience.

[00:05:23] Um, so the next comment, uh, question was from Kristin, uh, and Kristen’s question was what healthy boundaries are and how to keep them kindly. For instance, one of my kids could never say no. And the other always says, says no. Um, and.

[00:05:44] You know, I want to say something about boundaries because people maybe misuse them or misunderstand them from time to time that it is important that we set boundaries, uh, and it helps us to have better relationships with other people when we do know our boundaries and set boundaries and our firm and our boundaries, uh, but, you know, when we set boundaries, it is not only about getting our needs met.

[00:06:14] Um, it’s, you know, one way that I love myself and other people, you know, if I allow people to constantly cross myboundaries, that will damage our relationship because then I start to feel like that person has violated me and taken advantage of me and then I will resent them.

[00:06:36] But also I kind of, didn’t put up a firm boundary and didn’t speak up and say, no, you know, I really rather not, or no, I’m not comfortable with that because I just let it go. I didn’t create a boundary.

[00:06:48] So there’s, you know, I, I think I’m doing a favor maybe for that person upfront by letting them cross my boundary, but really I am harming our relationship by allowing them to cross our boundary.

[00:07:04] So it’s necessary. For healthy relationships to know how to say no and how to have boundaries. Um, and that just prevents you from having, you know, bad feelings in a relationship and so some tips I would say for having healthy boundaries would be, no, you need to know what you want and what you need and how to be very direct with those needs.

[00:07:30] And learn how to ask for them without guilt or apologizing. Cause sometimes we have the tendency to apologize for asking for our needs and we really need to knock it off. Uh, the other thing this is really big for me is, you know, knowing when I am depleted and I maxed out and I need to turn, turn down opportunities, uh, and you know, protect that’s protecting my time my-my downtime because I need that to operate and be my best, uh, and you know, speaking up, uh, when you need to rest.

[00:08:09] Those are really important things because, you know, sometimes people are like, Oh, come on. Let’s just go out.

[00:08:14] It’s, you know, I, I know you’re tired, but, you know, and I, you know, there’s. My health will fall apart if I don’t get enough sleep. So I really have to take care of myself by making sure I am getting enough sleep. Maybe I can go out late a night here and there, but I can’t do it a bunch of nights in a row.

[00:08:33] Uh, so it’s like really knowing to say no to those types of, um, you know, things that come up that don’t necessarily fit your needs.

[00:08:46] Um, and. Learning to say yes. Only when you really want to say yes. Not just because other people expect you to say yes, don’t say yes, just because you want to please other people that gets back to that thing where I was talking about the beginning with boundaries, where you’re going to say yes to please them.

[00:09:09] And you’re think you’re doing them a favor, but really you’re going to r- probably resent them for it because you’ve said yes. And you wish you hadn’t said yes. And so that harms your relationship. Um, and especially if you are starting to set boundaries with people who you haven’t been setting boundaries with maybe very well before, and you’re newly setting boundaries be ready that people are maybe gonna push back and resist until they realized you really mean business.

[00:09:43] Also, when you’re learning to set boundaries, if you are new to setting boundaries, you probably will not be graceful with setting boundaries. At first, I know I’ve probably you know, when I was first trying to have more boundaries for myself was maybe even a little rude trying to come off with my boundaries because I didn’t know a kind way to say this is my boundary.

[00:10:07] Uh, so it is a learning process and it’s something that gets easier with time and practice, like everything else, you know, the more you do it, the better and easier it gets.

[00:10:19] Uh, let me read comments, hang on, because I’ve got this long list of things, but if you guys have questions, uh, throw the questions in too, um, I hope that helps though.

[00:10:31] The goal is to be helpful.

[00:10:33] Hi. Okay. Great.

[00:10:37] Oh, wait, wait, wait, wait, wait, wait, wait, hang on. Ooh. I almost ended the video or accident. That is not what we want to do right now.

[00:10:47] Okay. Okay. Thank you, Vicky. Oh, you’re so awesome.

[00:10:54] Uh, I was diagnosed first with complex PTSD. And what remained after two years of therapy was a diagnosis of ASD.

[00:11:08] Yeah. And that’s the other thing, you know, we were talking earlier about, you know, society traumatizing, autistic people. Um, I believe there are autistic people out there who aren’t traumatized, but a large number of autistic people have experienced trauma and that’s something we really can’t  deny, especially talking to people of our community.

[00:11:31] Um, and then just the fact that society tends to diminish autistic people when we try to explain our needs or our experiences, because often people just don’t understand what we’re talking about and they’re like that makes no sense and they tell us things like, “Oh, you’re too sensitive.” ” You just need to toughen up.” “You just need to try harder. “

[00:11:57] Uh, it’s almost got the effects of, you know, being gas lit on – over and over again, even though it’s a very unintentional thing that happens in society, but, you know, we learn not to trust ourselves. And so a lot of autistic people have also said they have C- complex PTSD and that was another request to talk about that as well but I would like to. Talk about that topic with a mental health professional, that topic is a bit beyond my depths, but we definitely know there’s a lot of autistic people in our community that have dealt with that issue and those issues.

[00:12:34] Um, let’s see, still learning. Still trying to learn how to set boundaries, you know, and just keep, keep working on learning because it is a skill, it’s a new skill. You have to like any skill you will perfect and grow it and the more you practice this new skill, the easier it will get. And. Maybe not graceful at first, you know, like learning to roller skate or learning to ice skate. I need to, Oh, it’s fall. I want to get my roller skates out. It’s time for something, you know, speaking about something that starts off really not graceful, you know, rollerskating.

[00:13:10] When I first started learning to roller skate – really bad now, you know, I, I was, uh, Car Hop and I roller skated, uh, and did tricks and hold a tray on my hand and once upon a time, when many, many years ago, uh, so I eventually got better, but it was lots of practice and determination. Um, and a lot of skills are like roller skating.

[00:13:34] Um, having the ASD DX. Do you still have. Okay. That’s not a question for me. That is a question for I’ll let you guys connect if you feel comfortable sharing that with each other. Uh, okay. So I’ve got other, um, questions here that were submitted in advance, and I want to jump back to some of those. Um, and there were a lot of questions about the diagnostic process.

[00:13:57] So I’ve kind of grouped a bunch of those together that were, um, a pplicable to try and touch on all of them at once.

[00:14:07] So, uh, Jackie said, you know, they’re in the process of getting an official diagnosis and, you know, they want to say what have been some of the biggest changes for you following diagnosis.

[00:14:18] Um, and then Ed also said, I’d like to hear how you dealt with some of the emotions after diagnosis. And so these topics are really related. So I’ve kind of grouped these together. And then there’s one other question that kind of goes with it as well. Um, from Jan that I’ll get to in just a second.

[00:14:35] Uh, so first, you know, I want to say that, um, the biggest changes following diagnosis and, you know, the emotions after diagnosis, uh, I really did go through all of the five stages of grief when I was diagnosed.

[00:14:56] I didn’t know I was autistic until I was almost 30. It was about four years ago in the fall. Uh, and I, you know, when you don’t know you are autistic you know, you’re different, you know, you struggle with things that other people don’t seem to struggle with.

[00:15:20] Uh, for me, I noticed that there were also just certain random things that weren’t always necessarily useful, that I was really good at. Um, and I. I’ve been called many veins throughout my life. And a lot of them weren’t very nice. And the names I gave myself in my head, because, you know, we are often our biggest critics like we are harder on ourselves than we are to other people, you know, I, you know, we, – the voice in our head, we will allow it to say mean things that we would never say to another person and we should try to, you know, say, “Oh, I would never say that to someone else. I shouldn’t say it to myself” but it’s hard, you know, we’re harder on ourselves.

[00:16:02] Um, And, you know, the names that I gave myself were “not good enough” and “lazy” and you know, all the people that said I just needed to try harder and I was being too sensitive and I believed all of these things until I was diagnosed autistic and it took me a while to get to the point where I accepted the diagnosis.

[00:16:25] And it became something that was useful to me, um, you know, the five stages of grief are denial, anger, bargaining, depression, and acceptance and so when I was first diagnosed and I actually would like to say discovered moving forward because diagnosis is definitely a privilege that it shouldn’t be a privilege, but there are still a lot of autistic people out there who just don’t have access to the diagnostic process- got it stuck on my finger.

[00:16:59] Because, you know, they’re in a rural area or there’s not someone near them that will do it diagnosis on adults. Or, you know, if they’re in the UK, the wait list might be very –  years long and that’s a long time to wait to start getting on with your life.

[00:17:14] And a lot of Autistics choose to self identify, and I don’t want to take away from the validity of those autistic people who may never be diagnosed because I was diagnosed – or I was autistic in, you know, the 29 years leading up to my diagnosis before I knew I was autistic before I was diagnosed autistic, I was still an Autistic person.

[00:17:35] Um, but for me, you know, I felt that I needed a confirmation of my suspicions. I have so much self doubt.

[00:17:46] Anyone else ever struggled with imposter syndrome that you just doubt yourself? So I needed a second opinion, but you know, going through those, you know, whole stages of grief, that’s kind of that first one, you know, it was denial as I was first discovered, I say discovered autistic instead of diagnosed, uh, there was that denial.

[00:18:10] No, it can’t be. And so, um, as it starts to sink in and the denial goes away because it’s hard to deny once you really start to get into it. I was angry for a while and that’s when I started my blog and that’s why it was Neurodivergent Rebel. I was like, I’m going to tear down the establishment or whatever that meant, you know, I was ready to go.

[00:18:34] I was ready to attack all of these lies and things. I was just fired up. Uh, and I channeled that anger, you know, into creation the blog, uh, and luckily something healthy but even after that, you know, there’s this whole, um, where I wasn’t even talking about autism yet. I was just trying to talk about topics I thought were helpful to everyone, but especially autistic and Neurodivergent people because I was still post diagnosis in this self-doubt phase where I was, you know, researching and reading and looking for other autistic voices online to try and say, look, I’m not autistic, but the more and more I.

[00:19:27] Looked at the more, I couldn’t deny it because I was like, Oh, you know, I was looking for something to prove that I wasn’t really autistic, but I was just digging the hole a bit deeper than more autistic people I saw in the more autistic voices I encountered.

[00:19:43] And so, you know, after that, you know, there’s this whole, like I kind of – I was struggling to get some things, you know, that I needed at that time, uh, with, in the workplace and some other things that just were kind of epiphanys to me as the, um, the information was starting to really sink in.

[00:20:10] Uh, and I really got down for a bit, uh, because I felt very powerless and I wasn’t sure if there was anything I could do.

[00:20:20] Um, but I didn’t, I don’t feel like I stayed in that place too long. Mmm. But maybe I bounced in and out of it a few times along the way.

[00:20:33] Uh, and you know, that, that last stage of grief is acceptance and that is where I’m living right now and all of that, but it took a journey to get there. It wasn’t like, Oh, I’m diagnosed and now poof – I magically accept this and my life is all better.

[00:20:54] I had to really put my head around it and figure out what autism meant to me because as an as person, each and every one of us has a very different autistic experience. We have different, uh, coexisting conditions some of us, uh, we have different things going on we’re different types of learners.

[00:21:17] We are, we absorb and process information differently. Uh, and although there are a lot of commonalities that are very similar in a lot of us, uh, each autistic person, I feel when we’re just, when we’re discovered, we have to go through that process on our own and say, what does this really mean for me as an autistic person?

[00:21:36] Um, and. It’s going back over all the events that have already happened in your life and all of a sudden you see it with new light because it’s like, Oh my gosh, like looking at this through the lens of me as an autistic person, like all of these little life events, it was just like, uh, Oh, over and over again.

[00:22:02] Oh. Oh, that makes sense. But all of these little things that just never had made sense, and you just filed away, like this is never going to make sense. Okay. You know, I’ve just dismiss- dismiss them, just starting, coming back. Uh, and things started to make sense.

[00:22:21] It’s, it’s been a process, but, um, I’m glad I finally know. Sometimes I wish I could have known sooner, but at the same time, I don’t know if I would have been put into some kind of unhelpful therapy, if I would have been discovered as a child, because there was definitely an opportunity for that to happen at one point, but the family kind of pushed back against that.

[00:22:45] Um, so I’m glad I, I know finally.

[00:22:49] Let me read comments.

[00:22:57] My son.

[00:23:02] Well, it’s a long comment. Hang on. I’m reading.

[00:23:10] Okay. I’m not going to read all that out loud because I stutter sometimes it’ll take me a while to get through it.

[00:23:18] Um, But I also, you know, there was another question on the diagnosis and I want to tie that in as well from Jan.

[00:23:25] So Jan said, you know, how do you begin the journey to get a diagnosis as an adult?

[00:23:30] Uh, I find it very overwhelming, especially in this state that appears to have little to no resources for adults or women. Uh, I work in healthcare referrals asking for a patient.

[00:23:41] So I, um, personally, where I started was my GP had been trying to help me with some physical health issues that I was having and we had done all of these things and nothing was working and things just seem to start to be getting worse  – because I had autistic burnout and I didn’t know.

[00:24:04] Uh, and a lot of it was from exposure to environments that were hostile to my senses and fluorescent lighting. I started to have neurological problems and I was getting really sick and I was just losing weight, wasting way.

[00:24:18] I was down to about 95 pounds, which is not a healthy weight for me. Um, or most people, unless you’re a lot shorter and I’m pretty dang short. Um, anyway, squirrel.

[00:24:33] So I was getting really sick and we were out of ideas. And my doctor finally said that they thought I should see someone for my mental health and specifically anxiety. And at the same time, I had stumbled across a book that was written by an autistic person on animal behavior and when they described the way they think in relation to animals, and I remember being very surprised because they were describing exactly the way my brain works and exactly the way I think and I was like, wait a minute doesn’t everybody think like this?

[00:25:15] And so that’s the thing. Sometimes when a autistic person shares their experience with someone about being autistic, they may say, “Oh, everybody does that.”

[00:25:28] And I’m thinking, Hmm, Might you be autistic and not know it because I said that too, in my own head, thank goodness not out loud. Once to an autistic person who was explaining their experience to me and this was years, years earlier, but I didn’t really think much of it. I was just like, well, yeah, that’s how everyone thinks.

[00:25:47] No, not exactly. I was autistic and didn’t know it, but I’m so glad I didn’t say this and kept this to myself, but so now anytime someone says it to me, I just kind of. Okay. Uh, cause sometimes people, I it’s, I don’t know. I don’t feel it’s my place to out people, but sometimes they might say, have you been considered?

[00:26:09] How’d you considered? But you know, I don’t want to out someone.

[00:26:14] Um, things starting to make sense, true feeling for the first time things were put in place.

[00:26:24] It’s our yep- an opportunity to try our best to make it work and function with it. Yeah. And that’s the thing that being diagnosed did for me is it gave me the freedom to start working with my brain instead of working against my brain.

[00:26:40] Because for a lot of years I had been operating in the neuro-typical way of doing things and that wasn’t necessarily good for me and I was working against myself and I was making myself sick and I was perpetually in this state of burning out and recovery and burnout and recovery, and just always on that edge of burnout and that’s where I lived on the edge. That’s not where you want to live. It’s not a healthy place to live.

[00:27:09] Um, and so now, uh, that I am branching off and moving into the world of working on autism issues full time. I am making a conscious effort, to- not burn out and work that many hours and be very mindful of making time for planned sensory regulation activities in preventative maintenance of my neurological system, taking care of it instead of waiting until I crash and break down and get really sick and I’m unwell.

[00:27:51] And my body is in crisis mode to do something about it because that’s just not good.

[00:28:00] And I’ve done it too many times. So it’s not what I should be doing.

[00:28:07] Um, so how do you begin the journey? So, you know, I asked, um, when I was going through the health system, when I was referred to someone for mental health, I asked if I could see someone who knew something about autistic adults.

[00:28:28] They gave me the card for the local autism society. And the doctor even said, I don’t think you’re autistic, but here’s this, you can call this number and ask them for referral and so I did and I asked specifically, because you need to look for an appropriate doctor by appropriate. I mean, if you’re an adult human, you don’t want to hire a doctor that only works with children and only knows what autistic kids look like, because.

[00:28:59] Already the medical system is kind of stacked against us because it is based on the model of children and that’s why when you go in to be diagnosed, they are going to ask you a lot of stuff about your childhood and they are going to want proof of a lot of stuff, childhood. Uh, and so I was really lucky, you know, I a was well-documented child.

[00:29:22] I had baby videos, uh, and family members still alive and able to discuss me growing up little me how I was.

[00:29:31] Uh, and I took in, you know, probably about 10 pages of my own typed notes when I went in to get diagnosed. And so I was well prepared, but it’s all about memories and childhood because the diagnostic model is all about children.

[00:29:52] And so they don’t know what an autistic adult looks like and so they. Well, maybe they might know, but that’s not what the model is based on so they have to diagnose you based on that model that is mostly talking about testing children. So they have to be all up in your childhood and that’s a problem for a lot of autistic people.

[00:30:12] Now, the reason I say that diagnosis is a huge privilege, is that if you are estranged from your parents or your parents and your people who are around you growing up, maybe through your siblings, or you don’t have siblings like. Those people are no longer in your life they’ve passed or, you know, for whatever reason, if you don’t have a bunch of baby videos, because some of us, my age and older might not have baby videos.

[00:30:37] I was very lucky. My grandpa really liked cameras.

[00:30:41] You may not have what you need to go in and get a diagnosis because unfortunately, when getting a diagnosis, they may not just take your word for it. Your memories may not be good enough

[00:30:56] and that really sucks. Um, but you know, the local, like I just, I, I, you know, got the list of doctors from the autism society and I called each one of them to find out if they had experienced diagnosing adults.

[00:31:10] Uh, and I think so one that just didn’t make me feel, I don’t know there was, I called like three and just one out of the three. I just, it just felt right. Uh, and I made the right choice because when I was diagnosed, the doctor did not paint autism as like something that was wrong with me and recommended I read books by autistic authors to learn about autism instead of reading all of the medical mumbo jumbo.

[00:31:38] And that’s where I started before I then went to the internet and then when I put into Google autism… that’s when the anger started. That’s when the Neurodivergent Rebel was born.

[00:31:50] Cause I was like, Oh, this is terrible.

[00:31:54] It was all gloom and doom four years ago. It’s really bad. The Internet’s a bit better.

[00:32:03] Uh, Jodi, thank you so much.

[00:32:10] Working with my brain rather than against it –  I’ll write this on my wall.

[00:32:14] Yes. Write that on your wall. That’s what we all need to do. It’s like we need to learn to work with our, with our brains the way they work and not against it and learn to speak up for our needs, uh, when they differ, especially if they – if they, you know, if someone is saying, Oh, you don’t really need that.

[00:32:36] No, this is really what I need in order to do this. Thank you.

[00:32:39] Like, I always like, I’m going to take a note somewhere. I’m going to take a note in my phone. Um, or I am gonna put a note right away on my calendar. Or I am going to put a task right away, or I need to write it down and carry it with me until I can go put it into my digital task list because I know I won’t remember.

[00:33:02] And people are like, Oh, you’ll just remember. Can’t you just remember? It’s just one thing, you know, it’s like, no, please don’t make me try to trust my memory.

[00:33:12] I have so much more anxiety. When I’m trying to trust my short term memory that I know doesn’t work very well because I’m holding myself up to a standard that’s not fair for me and a lot of autistic people, we are, I’m being asked to hold or selves to a standard. And that’s not fair for us because we’re trying to hold ourselves to the neurotypical standard and that’s working against our brains instead of working with them, like why, you know, Okay. There’s no shame that I need to have a digital tool or a tool with me to help me remember, like I’ve got my visual calendar and I really stick to my visual schedule.

[00:33:52] It’s the only way I’ll get things done. It’s like, I’ll go live from this time to this time and then go transcribe the live video. And then I have the call at this time. So it’s like, I am following that calendar to the T and I am very dependent on it and I am not ashamed.

[00:34:10] And also what I’ve learned as being autistic person in business. Once you get up to the executive level leadership team, Everybody is that – so busy that they can’t remember what they’re supposed to be doing without, depending on their calendars and task lists either because there are way too many things to even be done. So it actually kind of levels the playing field a little bit.

[00:34:34] And the fact that I am already really used to being hyper organized in a computer externally, because I know I can’t organize here. I just can’t. I have a little bit of an edge because I’m already used to being dependent on the tools. Cause I’ve been dependent on them in one way or another since middle school – in awhile.

[00:34:55] So executive functioning was another, um, thing that was asked to touch on. Um, and that is where you know, a lot of us, we may not have the ability to organize ourselves, or we may not have a sense of time in the way that other people do, uh, or, you know, getting things done can be a struggle for different reasons.

[00:35:21] Uh, you know, and for me, it’s like all the little short term things that I need to do, don’t sync  in my head and then not really timelines in my head, my brain doesn’t work in timelines. There are just all of these ideas and things and so I have to go sequence them somewhere externally so I can visually look at them and see the sequence.

[00:35:43] Otherwise I don’t know what’s happening when, and it actually gives me a lot more anxiety would I don’t have this.

[00:35:49] So for me, like having everything visual on sequenced out and having that schedule like is a way I alleviate some of my anxiety.

[00:35:57] So, you know, I’m working with myself and I’m not ashamed of it anymore.

[00:36:03] I don’t think everything is easy to see on videos.

[00:36:08] Yeah. See, and – you may, you may have been masking or you, they may not have caught the right kinds of behavior.

[00:36:15] Uh, I had quite a bit of footage, which was really good from starting at a very young age, which was helpful. And you can see things when I’m, you know, a toddler. There are definitely things.

[00:36:30] The footage is actually up on YouTube. Um, some of it that was used in my diagnostic, um, interview, I think just, I don’t know if all of it that I present shared is in there, but a good chunk of stuff is up there on YouTube. Um, maybe I’ll find it and share it again on Facebook after this video, uh.

[00:36:50] When I went to get tested, I was told that anxiety can mirror autistic behavior. So my test was inconclusive and see that’s like more of that problem with this medical model that is only based on like, Oh, an anxiety can mirror autistic behavior.

[00:37:08] Uh, no. How about a lot of things? Do people have anxiety?

[00:37:12] Not all of us, but a lot of us have it. Cause it, um, I, myself deal with anxiety and I been working to have my anxiety not have so much of an impact on my life since I was diagnosed autistic, because I also received an anxiety diagnosis when I was diagnosed autistic as well. I was diagnosed with social anxiety, believe it or not.

[00:37:39] Um, and I don’t know if it was really social anxiety or generalized anxiety, because there’s a lot of anxiety in my head, but during the appointment, I know that there’s a lot of stigma on anxiety and mental health and I was at a point in my life where I was completely in denial. That I was like, I don’t have anxiety, you know, but I didn’t really know what anxiety was because nobody had ever talked to me about anxiety.

[00:38:07] And I was really downplaying that, but I had all of these physical symptoms of anxiety, like. Physically being sick and fit my heart racing and palpitations and all of these things like sweaty armpits and sweaty palms. And I – had anxiety. And once I realized what it was, I realized, Oh, I definitely have this and is actually having a really huge impact on my life.

[00:38:32] And so, you know, I was diagnosed autistic. I’m still autistic. I’ll always be autistic. And that was just, Oh, great. I’m autistic.

[00:38:39] But the anxiety is part of my diagnosis was what I had to really go to battle with like, okay, anxiety. Not today. Not today anxiety, you don’t win, but it’s like learning to have compassion for myself.

[00:38:52] Learning what anxiety is – learning – like, Oh, this is panic attack. We’re going to breathe through this. It will pass, you know, all of those things, learning, coping mechanisms that I didn’t have a it’s all a journey. And every now and then it may sneak up on me and get the best of me, but it gets the best of me less often than it used to. So I think that’s the way always be improving. Always be getting a little bit better.

[00:39:21] Um, let me see.

[00:39:26] I’m looking at my notes here. Cause some of you had submitted questions in advance. And so I have some of these, um, topics – if youguys have questions, please feel free to drop them as well. I think I’ll be here for at least another 20 minutes. If nothing, knock on wood. Nothing funny happens to the internet. Um, so here we go.

[00:39:48] The other question was from Sandy and this was, um,

[00:39:55] Asking about how you can overcome internalized ableism and love your autistic self. Uh, and you know, I talked a little bit about this in my diagnostic-  diagnostic journey words.

[00:40:08] Um, but you know, first, you know, internalize ableism for some of you that may not know, uh, is, you know, kind of really believing that you’re inferior because you have a disability and that is not good for anyone because you know, society often tries to remind us that were lesser, even if that’s not what their intent is.

[00:40:31] Uh, they, it just kind of happens. Uh, People like, Oh poor you – you’re autistic or, Oh, I couldn’t tell you were autistic. Like, you know, as if autistic people were a lesser type of people because we are autistic – and we’re not.

[00:40:46] And so people may not even realize that’s what they’re saying or implying when they make these kinds of comments. Um, but we hear them over and over again sometimes.

[00:40:57] Um, and you know, the point is everybody needs some help from time to time. And the things that we need help with is going to vary depending on a number of circumstances, you know, our neurotypes and our individual abilities, um.

[00:41:17] You know, before COVID hit I had flights booked from March to November to go do conferences and speak about autism and now I’ve been moving all of the presentations to Zoom, which is great because zoom is technically easier for me, but I’m – the one thing that I miss the most about traveling to all of those autism conferences is seeing other autistic people.

[00:41:43] I still do get to meet people on Zoom, but the face to face meetings with others that are very similar to me was always wonderful. Um, and there’s something I

[00:41:55] noticed specifically on my travels that helped me a lot over the past few years is often, you know, when I am speaking to other autistic and neurodivergent people, even if we’ve never met before, there is just ease and comfort in communicating with them.

[00:42:12] And a lot of times, you know, it’s like I’m talking to an old friend, despite it being the first, uh, in person meeting with this person, um, a lot of the time and it’s, uh, – I find it easier to connect with other neurodivergent adults, even now, you know, a few of my closest friends are diagnosed with ADHD.

[00:42:38] And if autistic people were the majority, I feel like the world would be a very different place.

[00:42:47] Um, you know, imagine if our ways of doing things and interacting with the world were normal. Um, or if we forced non autistic people to do things the autistic way, like it would be really hard for them.

[00:43:01] And although you, everyone has struggled with social and physical distancing in their own way. And a lot of autistic people are really struggling with social and physical distancing too, but, you know, for different reasons, because we all have different reasons. We struggle with things.

[00:43:16] I feel like I have seen a lot of neuro-typical people struggling, maybe the most, not all the ways, but with this physical and social distance thing, um.

[00:43:29] But then again, you know, autistic people, if your supports were taken away, um, by COVID because some, you know, maybe you had like group or therapy or people you were seeing, um, now you’re and the normalcy of your life has been disrupted because a lot of us, we have a hard time, you know, when our routine, like I’m an autistic person who really needs a routine, not everyone does, but I do.

[00:43:54] And a lot of us do, um, COVID kind of disrupted a lot of that for a lot of us. And it put the world in this state of rapid change where everything is constantly changing and we’re like, what’s the new normal, I just need some normal. And there may not be normalcy anytime soon. And that’s hard and scary for autistic people.

[00:44:16] Uh, but those, you know, the people who, um, like I don’t understand, people are out going to parties and things, and it’s like, That’s really unnecessary, but anyway, to each his own.

[00:44:28] Um, the point, the point of all of that is, um, there’s no shame in needing support. Um, non-autistic people, you know, they need their own type of support too and the difference is they have built the world to support them.

[00:44:46] And that’s part of the problem is our world. Doesn’t kind of support us right now and that’s what a lot of people are working to change.

[00:44:55] Um, but it’s, it’s, we need, you know, it takes an army. We need a lot of people to do it.

[00:45:01] Mmm. I’m not going to get through all of these questions.

[00:45:08] Uh, I’ve got some that I’ve kind of grouped together. Um, people are asking you about school and education. Yeah. And. I am not an educator for young people. I am an educator in the business and works place sphere. So that’s not my, uh, area of expertise.

[00:45:28] I can share some of my personal experience with school and stories about that, but I feel like I’d want to have someone who is a professional about childhood education  helped me topic, uh, cover those topics.

[00:45:43] Um, But, you know, a few things that I can say that apply to me throughout my life, because, uh, Angel was asking, how do you deal with sensory issues in the workplace? And a lot of this could potentially be things to consider in the school as well, um, and would be.

[00:46:01] And then, uh, Cindy was asking about the importance of sensory breaks. And earlier, as I was saying proactive strategies, as opposed to reactive strategies, I am making efforts to engage in relaxing, recharging sensory activities – regularly so that I don’t run myself into the ground. It’s really important.

[00:46:25] Um, but a lot of that, you know, sensory issues in the workplace, well, I have physically removed myself from the workplace because my sensory issues were such a problem, but. Every autistic person has different sensory issues. For me, lighting artificial lighting is a really big trigger. So I’m sitting in this room full of natural light.

[00:46:50] If I went to a physical office workspace, I would need a quiet office where I can control the lighting and have access to natural lighting. I would also need to be able to utilize, uh, devices to control sounds in the environment around me and. Also, I would need to bundle up if the AC is on because I get cold very easily.

[00:47:16] Uh, we’ve got the AC set on 75 right now and I am cold. I am cold. I’m like really cold. And the offices are always really colder than that. And my hands are cold. Like I will be miserable the entire time. And I’m just thinking about how uncomfortable I am.

[00:47:36] When I go to work in physical offices, if they won’t let me take sensory protection, headphones, music, sweaters, uh, sensory tools, you know, I’ve got this one here on my finger that’s always nearby me and easy to have adult fidget spinner.

[00:47:56] But having these things handy and in meetings and say, you know, I, I even wore sunglasses and hats in one office where they have fluorescent lighting, but really it’s pushing to say, I need to work in an environment that doesn’t have these things for me.

[00:48:12] Uh, and the hard thing is with employers sometimes they’ll say, Oh, well, you know, it sounds like something everyone would like to have. It’s not fair to give it to you and it’s getting them to understand, no, this is something I really need in order to do my best work and be the best version of myself in your workplace.

[00:48:28] Um, I asked. If I can actually work remotely due to my sensory issues and that I was working remotely, uh, my last with my last employer for several years and it was because they, they didn’t say that’s not how we do things here. They said, okay, well, That’s not how we’ve done things in the past. Tell me how, how did this work?

[00:48:52] And they let me show them how I would work effectively as a remote employee. And, you know, I think their whole team was remote now.

[00:48:59] Actually their team was remote before COVID, which is really good thing. Um, but it was because they were approaching with curiosity instead of, well, that’s just not how we do things here.

[00:49:13] Um, There needs to be some flex from the employer and if employers aren’t ready to do that, like I can’t work in a work place that will not flex with me in the future.

[00:49:23] And now that, you know, I am no longer with that employer, I’m working on my own. Uh, it is, I have even more control over my time and my schedule and my resting and my workload and how much work I actually take on, um, so that I can make the sensory breaks like this is-  I’m going to go outside. I’m going to go move and do this thing for a little bit, you know, a few times a day to actually like get up and take care of myself. So I don’t get to the point where I am physically unwell from neglecting my, my sensory health, because I don’t want to live that life anymore.

[00:50:05] Let me see comments here.

[00:50:07] Do. Anxiety can be confused as the cause while it’s actually the effect. That’s why behavioral therapy.

[00:50:18] Yeah. Yeah. And unfortunately, it’s too much people saying, with autistic people – we aren’t getting help with our mental health because an autistic person’s like goes to get help with their mental health.

[00:50:32] And they’re like, I have anxiety- can you help me with my anxiety and the mental health professionals? Like. Well, yeah, you have anxiety. You’re autistic, autistic people have anxiety. Sorry. That’s just how it is.

[00:50:43] And it was like, excuse me, what? No, you know, I don’t, I think all autistic people have anxiety. I have anxiety personally, and there are a lot of autistic people who do have anxiety, but I believe there are autistic people out here don’t have anxiety.

[00:50:59] And my anxiety has kind of been on an ebb and flow up and down throughout my life. It has peaks and valleys. It’s like a roller coaster.

[00:51:07] You would – right now, I’m up here. It’s doing good. But you know, it could, it could get worse and I’m going to always be aware if it’s happening and watching for it. So it doesn’t take over my life. Um, because I think it’ll always be there. It’s never completely gone, but it doesn’t have the same, hold over me as it used to.

[00:51:32] I learned when it’s not relevant to listen to it. Sometimes my brain is lying to me and that’s okay. I have compassion for my brain, but buddy, it’s like brain buddy. You’re overreacting. Okay. I know, I know. You’re trying to keep me safe, but the anxiety is not helpful right now.

[00:51:52] Angel, good to know looking for a new job and am disclosing because I know I will burn out if not accepted as autistic.

[00:52:01] And that’s the thing. This is like a controversial issue. Should you disclose, or should you not disclose. And I have personally done both and legally you know, you shouldn’t have to disclose the interview process. Uh, and it would be great if there was a company where their company was just so inclusive that you didn’t need to disclose in order to get accommodations.

[00:52:22] And all employers were just like, Oh, what do you need to be your best version of yourself? Right. And it didn’t, you didn’t need a medical order to make that happen. It would just be like employers, be good humans and. Accommodate all of your employees, regardless of if they have a medical paper to back it up, like if someone says they need something or something would help them do their job better, it should be beneficial to the employer to give it to them.

[00:52:49] But that’s not where we are just yet with a lot of employers. Um, and so for me, you know, I’ve realized that, you know, I’m gonna, I’m an autistic person and the accommodations I need, um, I don’t want to be thought of as like, Oh, I’m being difficult or I’m, you know, this othered person.

[00:53:11] Um, I, when I tell someone I’m autistic in a job interview, it is a chance for me to do a little bit of interviewing back because the job interview should be a two way street.

[00:53:24] It shouldn’t be like just the job is trying to find the best candidate you’re should also be digging on that employer to find out if they’re going to be a good place for you to work, they’re going to treat you right. If you tell them you’re autistic and they react the wrong way in the interview already, like, do you really want to work for that employer?

[00:53:44] I mean, It’s hard because autistic people were already under employed. A lot of the times, if we’re, if we’re employed at all, like we have an employment crisis with autistic people and unemployment rates are higher in neurodivergent population.

[00:53:59] Uh, and that’s, you know, one of the things I’m personally trying to work on, uh, in some of my projects with educating in the workplace and, uh, working inside organizations, doing coaching with neurodivergent employees  – employment coaching.

[00:54:16] And I’m also going to start taking on life more life coaching clients this fall. So more details about that coming soon.

[00:54:25] Okay guys, it is almost the top of the hour already, and I had more questions I didn’t get to get to, but you guys submit. Keep submitting your questions here.

[00:54:36] Uh, I’ll leave the live up so you can replay it if you, um, didn’t get to it. Uh, or if you got to it late, I should say so you can replay it and I will download it and work on transcribing it so that everyone can have a transcript. If that makes it easier for you to follow or a level of awkward around.

[00:54:56] My tongue is giving out. My tongue says it’s about an hour. That’s all I can do.

[00:54:59] Not really. I could talk all day, um, info dump. Okay. Yes. There’s a lot of questions I didn’t get to. Um, but that means we have more things to talk about in the next live.

[00:55:11] Um, I just want to say this blog is made possible thanks to the help of readers and viewers like you, whether it’s sharing your thoughts on one of my posts, submitting a question like many of you did for today’s live stream or hitting the like, or the share button on a video or subscribing to my extra content.

[00:55:30] You, You, YOU- make it possible –  so I really wanted to thank you all for being here. Thank you for being a part of my world.

[00:55:38] And there are a few ways you can help subscribe and support the work I do. If you would, um, Patrion, if subscribers, they gain early access to most of my videos, as well as early announcement, sneak peaks and behind the scenes of some of my current projects, it’s a pay what you can subscription, uh, starts at a dollar a month and everyone gains access to the same benefits regardless of subscription level. And I think you can now scrap subscribe. You can now subscribe annually for as little as $12 a year, so that that’s really affordable.

[00:56:17] Uh, and I’m going to start writing my autobiography again soon. And as a thank you, if you are supporting on Patrion starting in October this month through whatever  I do get that book since to print. I’m going to be printing as a thank you the names in the book, uh, to those Patrion supporters for making that possible, you can also subscribe on Facebook and gain early access to most of the NeuroRebel videos as well as a private, no rebel supporters, Facebook group.

[00:56:47] And once I reached 25 Facebook supporters, I’m going to start doing live streams in the private supporter group there as well.

[00:56:53] Um, and if you want to check out my Zazzle shop, um, I have this design other designs there. I’ll drop that in the video description as well.

[00:57:03] Uh, but really the easiest way you can support my work is share my videos and content, uh, because I always need help getting the word out- word out. And that is actually just as helpful as anything. For mentioned.

[00:57:17] Uh, thank you all for being here. Thank you all for the support and the encouragement over the last four years.

[00:57:24] Uh, I am truly grateful for each and every one of you and I’m excited about what we are creating together.

[00:57:31] We will talk again soon. Bye guys.

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2 thoughts on “Autism & Neurodiversity Chat – Are All Autistic People Traumatized? – Problems with the Medical Model

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