Autistics Living with Unsupportive People

Transcript

Autistics Living with Unsupportive People

September 22nd, 2024

Episode Preview

In this episode of Today’s Autistic Moment, Nicole LeBlanc will join me in the first segment to talk about the challenges of finding adequate and affordable housing as reasons why many Autistics live with unsupportive people. Becca Lory Hector will join me in segment 3 and 4 to provide you with helpful tips about how to handle difficult people by setting and maintaining good boundaries, by creating safe spaces and routines to help you regulate.  We want to help Autistic Adults to feel safe and happy in your homes.  Join us for this informative show.

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Segment 1

Welcome everyone to Today’s Autistic Moment: A Podcast for Autistic Adults by an Autistic Adult. My name is Philip King-Lowe. I am the owner, producer, and host; and I am an Autistic Adult. Thank you so very much for listening.

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After this first commercial break Nicole Leblanc will join me to talk about the many issues with Autistics to find affordable and adequate housing.

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Segment 2

Philip King-Lowe

Nicole LeBlanc, welcome to Today's Autistic Moment. It is my pleasure to have you as a guest today. So welcome.

Nicole LeBlanc

Thanks for having me on your show today.

Philip King-Lowe

You're welcome. Thank you. You're welcome.

Nicole LeBlanc

Great to be here.

Philip King-Lowe

Yeah, I'm glad you're here too. We're doing a very important topic today. Um, we're talking about Autistics who live with unsupportive people. I think we can both agree that there is a housing shortage, housing problem among Autistic Adults. I think we can both agree on that, right?

Nicole Leblanc

Yes. Rent is too high.

Philip King-Lowe

Rent is too high. Lack of services. Yeah, exactly, yeah. So, we know that we have a housing issue. A lot of Autistics Adults are there's a lot of economic inequality among Autistics where affording housing is a problem, and we just talked about rents being high, but also just because many Autistics are unemployed or underemployed. So, affording their own housing can be a problem. Many wind up in group homes, which, you know. And the point is, is that they live with people who are not supportive of their Autistics needs, and so we're going to talk about that, and we're going to talk about especially since a lot of our intersectional communities, those being people of different races, we have a lot of immigrants, for example, who are living in horrible conditions due to, like, I say, immigration status or whatnot. And so, we want to talk a little bit about that. So where can we begin to explore this topic of Autistics living with unsupportive people for both our Autistics, for our Autistic Adults, and those of our intersectional communities, let's start with that. Go ahead.

Nicole LeBlanc

I think we need; we need a national movement for a system of care for Adults with Autism. Yeah, we need, you know. We need to, you know, you know, allow anybody with Autism to be able to get HCBS supports. We need, you know, more low-income housing, you know, reduce rents like, you know, like when we look at HCBS in Maryland, for instance. You know, I've applied for DDA services in the state of Maryland numerous times, and I keep getting denied. And they're like, Oh, you don't meet ICF level of care, institutional level of care. Yeah, look at me. I'm not as functioning as I appear, and I'm one of those people who's also developed complications from COVID-19 on the spectrum of long COVID. We need, we need, you know, we need rental subsidies. You know, through other than just section eight access we need, you know, access to HCBS. You know, job coaching home support to help with organization day to day tasks that we struggle with. Absolutely. Yeah, there's more. You know, we need to move away from segregated settings like group homes, institutions. Right. Uh huh, yes, COVID has shown you know being in those settings is a health hazard. Yeah. Studies, some studies during the pandemic, showed that if you self-directed and lived alone or lived in smaller with less people than those who live in larger congregate settings, your covid risk was lower than. And people with Autism are one population that risk of severe COVID, long COVID.

Philip King-Lowe

Yeah, well, yeah, absolutely. We often find that many Autistic Adults, again, they often live with family, some with parents, some with a grandmother or someone who is not appreciative of their Autistics needs, you know. For one thing, there's a lot of Autistic Adults who people don't believe that they're Autistic. They don't believe them. They just assume, well, because they're "high functioning", and we don't like to again Today's Autistic Moment does not support the use of those words. Want to be clear about that. We do not support those terms, but those are terms that many are still, still cling to because they've heard it so much. And so, there's lots of people who you know they're living with somebody who doesn't believe them. They may just assume they're lazy, or they haven't matured properly, or anything, some of those horrible stereotypes. And so, because of housing, as you say, there's not as much of it, you know, affordable housing and that sort of thing they wind up living in, in places that are really bad. I have heard my I have heard a fair number of Autistics who live in group homes where they have been abused in some way, shape or form. I have, you know, I know of one couple right now that they are living with a grandmother of one of them who is very abusive. They've got, she's got them in some horrible terms, horrible terms to live there, that they have to live there. Or she won't, you know, let them inherit the home. Or, you know, she'll cross them off her will and just, they're just, you know, she's not well. So, they're just, you know, putting a lot of pressure on that couple, um, but these are not uncommon stories. Sad to say.

Nicole LeBlanc

Amen, I can relate, yeah. And, you know, I didn't get an Autism diagnosis till I was 21 and prior to that, I had diagnosis of mild Mr. Nonverbal learning disorder, yeah, EED, which, you know, and you know, when I was 21, I got that job being in an abusive environment. Job was a federal government job training program for low income, disadvantaged young adults. Me, I never took college prep classes, so my VR counselor suggested I go there to, oh, boost my skills. And the only thing that good came out was being diagnosed with Autism. It was, you know, abusive environment, people, you know, things you know, N word and all that sings, racial, gay slurs, teasing, bullying. Right yeah. Skin disorder, which is epidermal nevus syndrome, yeah. And, you know, and as a as a kid, you know, you know, I was always outgoing. I never, you know, had typical personality characters that they, most people expect with Autism. Right yeah. And, you know, and you know, I grew up with a brother who's, you know, saying the R word, the N word every time he got pissed off at the video game, computer game. I've dealt with that and, you know, and it's taken me many years to get my siblings and everyone to, you know, accept me for who I am. Right, I've had multiple disorders. I went from, you know, learning disabled with ADD to Autism, then also, I spent 27 years with a diagnosis of epilepsy, only to find out 2016 Oh, your seizures are psychogenic seizures. They're disassociation out of body experience. What time you know I've had parents. Oh, nothing happened to you. Get over it. Yeah, trauma is more severe, and people with Autism, just saying, telling somebody to get over trauma does not work. You know my you know, and like, you know you could, you know, my mother smoked while she was pregnant with me as a kid, and I swallowed some crap during the birthing process led to breathing difficulties. You know, that's a trauma.

Philip King-Lowe

Right.

Nicole LeBlanc

Now, and studies show people with Autism are more sensitive to trauma, and you know, it's, it's time that, you know, we need a service system that can, you know, support. You know, all adults with ASD. You know, we need support groups for everybody who's been diagnosed as them adult late. We need support groups to, you know, family therapy to deal with getting family members to accept us for who we are. You know. You know, disability is not always visible. Just because some of us look fine on the outside and look smart and look like nerds, does not mean, but Right? You know, just like you know, let's look at, you know, complications of COVID-19, long Covid. You know, COVID-19 can cause, you know, fatigue issues, Fatigue issues are common, Autism, refactoring, vitamin D, B, 12, iron malabsorption, GI issues, which is why my house is a mess for instance. Yeah, yeah. Even though I may look perfectly healthy on the outside, if you look up me as a high if you were to look up my medical records, you see I'm not.

Philip King-Lowe

We are seeing more adults being identified as Autistics. We are also seeing, you know, the movement for Neurodiversity that is pushing for, you know, that everybody is a Neurodiversity Paradigm. It's about everybody basically just having different brains, that's all but of course, our society makes more out of that, a lot more out of it. There are more groups on social media for Autistics and late Autistics, but let's also talk, talk, especially about the fact that we're talking about a lot of late, identified, late diagnosed Autistics, especially in their 50s and 60s, after so much of their life is already gone and they've learned that they are Autistic and they're having to live, you know, live in places like assisted living facilities or other facilities where they are confronted by staff who simply are not aware of what Autism is. You know, when I first started Today's Autistic Moment, I had a great show with Dr Theresa Regan where we talked about Aging Autistic Adults: What We Needed Yesterday. And Dr Regan spoke of the many times that she has been called to a doctor's office as a neurologist, per se, because they have diagnosed someone as having dementia. And they call Dr Regan because they show things like the executive dysfunctioning or functioning issues and things with certain things they remember, but they're not showing it yet physically. They're not showing the physical signs of dementia. And so, Dr Regan will often be called, and they will often inform the doctors that this person is not, does not have dementia. They are Autistic, which is very different from. But we have doctors, nurses, care professionals, who just don't know what it looks like to be able to give them an accurate diagnosis, and that's one of the reasons why a lot of a lot of them wind up living with unsupportive people, simply because they just don't know. They have not been educated; they have not been made aware that sort of thing.

Nicole LeBlanc

And you know, nowadays, Autism is not, you know, when I first hear the term Autism, first thing I thought of was, oh, that's a boy thing, somebody banging their head against the wall and being. Yeah. That's what I first thought of when I first time I heard that term, when I was 21 and I'm like, isn't that a boy thing? Yeah, bang the heading into the wall. Yeah. I've had many, many jobs, and just the shock of hearing, I'm like, Oh my God. I'm like, and then all of a sudden, during that time, 21 job, course, psychologist is, you know, giving me diagnosis of PDD NOS now, just called ASD, pervasive developmental disorder, none of them I specified how. All of a sudden, I start buying all these books reading up on Autism. I'm like, wow, gee, hmm. It looks like my whole entire life, yeah, yeah, wow. A diagnosis that actually makes sense.

Philip King-Lowe

Well, Nicole, I want to thank you for being on today and for this great conversation. I think we've given our audience a good look at the situation.

Nicole LeBlanc

You're welcome. Yeah.  So, thanks for being I love doing podcasts.

Transcribed by https://otter.ai

After the commercial break, Becca Lory Hector will show us how to create boundaries and safe spaces while living with unsupportive people. We’ll also help Autistic Adults find supportive communities to share frustrations, seek solutions, and access the care they need.

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Segment 3

Philip King-Lowe

Becca Lory, Hector, welcome back to Today's Autistic Moment. It is always a pleasure to have you here. So welcome.

Becca Lory Hector

It's my pleasure to be back. I'm excited to be with you today.

Philip King-Lowe

Thank you. We've just heard some stories from Nicole LeBlanc who, who gave us some real issues that Autistics face when we're living with unsupportive people, but when we talk about being engaged, I want us to give Autistics like Nicole and others that they're living with unsupportive people, I want to help them get engaged with what to do in those situations. Because there are ways that they can use their Autistics strengths to, you know, cope with those situations. Number one. Number two, how to again, get through it, and also, later, we're going to talk about empowering them to change their situation. So, let's start with the engagement piece, and especially since we're talking about Autistics and our intersectional communities where there's a lot of disparity with housing going on. So go ahead.

Becca Lory Hector

Yes. Well, housing is one of those major quality of life things, right? So, you know how you live, where you live, whom you live with, deeply impacts your quality of life. And there are a lot of variables that surround how we end up in various living situations, and sometimes we have control over them, but most of the time, we don't have control over all of it. And I think that's how we, most of us, end up, right in some of the situations where we're maybe not living with people who we maybe wouldn't be our first choice, right? Or we're not in a living situation that wouldn't be our first choice. It can have to do with unemployment. It can have to do with where in the country you live, right? It can have to do with, sadly, the color of your skin that you're disabled, right? There are lots of unconscious biases out there in our world that create those barriers to equity for us, right? But we are always have a certain amount of autonomy that belongs to us, a certain amount of control over portions of our lives, right? So, we may look at our housing situation and we might say, you know, this is not a situation that I really like or is good for me, and I'd like to get out of it, but I can't because of XYZ, whatever. But that doesn't mean that you can't change the way that you are living when you are living in that situation, right? There are things you can do to take care of yourself, something that I think Autistics struggle with a lot in lots of areas of our lives, not just housing is boundaries, right? Setting up boundaries around ourselves about what is behavior we will accept and what is behavior that we won't accept from other people. What are they are? What are our rules right around the place that we're living? Right? So, around our space, our bedroom, for example, what are our rules around our sleeping space and how whether or not that's a safe space for us? You know, whether or not people can enter that space, whether that space is geared towards our sensory needs and our other needs, right? Because we all should have a safe space somewhere in our lives, right? When I'm out in the world, that safe space for me is my car. When I'm home, that safe space for me is my couch in my living room, right? But not everybody has that. Maybe for you it's the bathroom, right? If it's that small, maybe for you, it's your bedroom, right? And that's all you get right now, right? But that space needs to be treated as the safe space it is, and you need to put up boundaries around it. Same thing around boundaries around food, if we're sharing a kitchen, right, around money and rent payments, right? We need to have boundaries and order around the way that those things happen, and that is a human need, not an Autistic person's need, right? And so, it starts there for us in those situations. Where am I letting people step on me too much, right? Where are they getting away with too much? Where am I being too nice? And where should I set up some boundaries around things. Are people eating my safe foods? Well, I need to put some boundaries around people eating my safe foods, right? I'm happy to share if you ask or whatever, but we need to have a set of rules, and that won't we create those boundaries we have a little bit easier time dealing with a really negative housing situation. Other thing to remember is that getting changing your housing situation is often something that takes some time, right? You may know in your head for a very long time you want to leave your housing situation, but it may take you some years to get yourself out, right? And that kind of patience is really hard because you know you want to shift, but when we're in that moment, that waiting space, like when we're trying to change things up, that's when those boundaries matter the most, right? When we need to assert our safe spaces and assert ourselves in that there are certain things that are unacceptable in our area.

Philip King-Lowe

And matter what? What do we do when people aren't just aren't respecting our boundaries, and quite frankly, they've got more power than we do. I mean, that's one of the big challenges, is that they assume that, because we're Autistic, that means we're powerless, and so they must do whatever for us, because somehow, we don't know what we're doing. You know, they assume the assumption of incompetence is just, it's overwhelming.

Becca Lory Hector

The secret to all of that is the self-advocacy piece. It's being really vocal with your self-advocacy, and that can mean saying things like, I appreciate that you tried to help me with x, but I'd really like to do it for myself next time, right? And that means a commitment to those boundaries, because that person's going to do it again, because habits don't get broken so fast. So, it means staying consistent with that. So, when they do it the next time, you say again, I appreciate that you helped me with this, but I'm going to remind you again that I would prefer to do it myself, right? Because people need to learn there. It's I try to, it's sad, but try to think of it a little bit like you're training a dog. That dog doesn't learn to sit the first time you give it, right? They learn over the course of it. So, you're not going to say to yourself in your head, I have this boundary, right, and therefore everyone must keep it, and that's it. And then someone breaks it, and you let it go. Can't let it go. You have to be committed to that boundary. You have to say you broke my boundary. You have to communicate that those things are unacceptable, and that doesn't mean you have to be unkind when you can meet that communication, right, yeah, and say it very kindly, right? Yeah. And the other thing is, you have to be patient and know that you're going to have to reteach it a few times you're learning, you're wanting someone to do something differently, so have a little patience as they're learning. There's a way to remind them and also keep your boundary, right? We can do that too, right? And the most important thing is, when you're setting up new boundaries for yourself, like that, you must communicate them to other people. They don't. They're not mind readers either. So just because you've set a boundary about your bedroom and your head doesn't mean that that was then communicated out to everyone you live with. And so, we need to figure out a way, once we've decided on a boundary, to communicate that to the people around us that we're going through a process of a change, that we're going to be working on some things, and one of those things that we're working on is XYZ, so please respect that, right?

Philip King-Lowe

Yeah. One of the ways that you can assert your boundaries is to create yourself, maybe a sign of some kind. I mean, maybe make for yourself this, this list in large print, if you have access to a computer and a printer, write them out and put them right on the door when you close it. Yep. You know. Maybe just as a reminder, if you have again, I know this is access to what you can, but maybe you might have it laminated so at least they can't, hopefully they can't rip it apart. But you know, there's nothing wrong with finding your ways of stating your boundaries. I've made a bit of a joke out of the fact that, you know, hotels can get away with giving us a Do Not Disturb sign, so we have every right to make one for ourselves.

Becca Lory Hector

Absolutely, right? But that's true, that is that sign, it's a perfect example of what a boundary is, right? They're like the hotel is saying, You look, I get that sometimes you don't want to be bothered, so when you don't want to be bothered, please communicate that to us with this sign, right? And that's that we want. That's the setup we want, where we want to say, I have this boundary, and now I need to communicate it with you with a sign. And that can be either a verbal sign, you can do it in writing on your door and a sign. You can do it in your handwriting if you want to, right? It doesn't even have to be printed. You can put notes on the refrigerator. You can do all kinds of other ways to communicate. You can text somebody or send an email, if that's more comfortable for you, right? There's lots of different ways to communicate, but the communication is essential, because nobody, sometimes people step all over your boundaries, not because they're trying to be disrespectful, but because they literally don't know what they are, and they don't even realize that they're doing it right? And so, when we institute new ones, it's a new way that we want someone to behave around us. We need to communicate that, and it is you can use a sign. You use anything, right? There's lots of ways to share that with somebody.

Philip King-Lowe

Yeah, definitely. And if you are somebody who happens to need some kind of AAC, let's say you're living with somebody and you definitely have, you both have iPhones or smartphones. Do a text, I'm in my room alone, do not enter, you know, be that bold, um, you know, um, yeah, I mean, and.....

Becca Lory Hector

And it’s really not, I mean, and it's not really that bold, is it right? We feel that we are, I don't know, taking up space in some way that we shouldn't be allowed to when we say those things. But do take up your space, you're allowed to take up that space. So don't, you know, don't feel like, Oh, they're gonna think, I mean, that's the thing about boundaries. People think that boundaries are mean that their way of saying to people, no, that's what a boundary is, but that's not really what a boundary is. The boundaries job is to communicate to other people what is acceptable to you and what is not acceptable to you. That's the job of a boundary, right? There's no unkindness in there. The unkindness happens in the way that we communicate our boundaries, right?

Philip King-Lowe

Yeah, and you need to be careful about how much you as the Autistic individual, compromises your boundary. You know this is clearly up to the individual Autistic, but the more you compromise it, the more the other person's going to be compromising it for you. So, this is one of those places where I'm going to say you need to figure out how you're going to exercise your discretion here. I mean, you know, obviously, if you're in a in a position where you've got a medical emergency, then you need somebody to intervene, but unless it's something like that, you know, again, you're the one who has the say over what you compromise and what you don't.  Now, you know, one of our Autistics challenges is often what we communicate and what the other person understands are not necessarily one in the same. You know, someone's going to say, Well, you told me to keep this boundary. But yet you, you know, whatever it's, you know, like I say, it's the playing, you know, battleship with your communication, sometimes you take a peg and sometimes you hit the boat, sometimes you just hit empty water. But you know, you know the point is to try and to be very assertive with your boundaries.

Becca Lory Hector

And consistent. Because what Philip's talking about it that that's when it's hard for people to read, when you make when your boundary has allowances, when you don't hold it yourself, and you don't hold yourself to your own boundary, right? It's no longer a boundary. It doesn't work anymore. It becomes a porous object, right, right? And so, what we want to do is make our boundary as strong and immobile as possible, because then people start to learn, no matter how many times they run into it, it's always going to be the same. Yeah, right, yeah. We make allowances to it, and they see that it's flexible in some way, then they take the onus on themselves to make changes to it right, or adjustments, and that's not what we want. The purpose is to create that autonomy for ourselves, were we are the ones in charge.

Philip King-Lowe

Yeah, I totally agree, and I really appreciate those answers. Let's talk about empowerment. You know now that we've explored this topic and talked about getting our Autistic Adults, our Intersectional Autistic Adults, engaged, how can we empower them? This is where, you know, sometimes just creating a nice Facebook or even a LinkedIn group, you know, you've got to have your people that you can air your frustrations with, you know, and there's a lot of Autistics that are living with unsupportive people. Sometimes you're living with them in a group home, which, again, let's not spend too much time there. Sometimes you're just living in a situation where there's almost no way to win when it feels like there isn't. Well, you know, if you're if you're not, I'm saying one of the ways you may be able to let the air out of that bag that's not letting you breathe, if you will. Is to is to create some kind of community, find others in your situation, and just go ahead and have a complaining session. Just say this is what's happening. Sometimes that's exactly how you find people who are supportive, who may be able to get you out of a situation like that. You know, sometimes you know, you know, I remember Devon Price saying a few episodes ago that, you know, sometimes you will find somebody who will take a chance on you and just give you an opportunity to get yourself out of the situation. Now, that may not happen for a while, but sometimes you may find that so yeah, so let's talk more about empowerment.

Becca Lory Hector

Okay. Well, I think one of the things when we're in these situations where we are really unhappy, and it happens in housing, but it can also happen at work, that we also can't leave for any number of reasons, right? And we have to kind of make our way through until something shifts so that there's an opening and an opportunity to make that change right? And the waiting for that opportunity to arrive, or the waiting for you to save up enough money, right? Or the waiting for whatever it is to come that raise or promotion is the hardest part, and what we need to do to during that time is learn to do some self-care and learn to take back whatever control we do have in the other parts of our lives, right? Because we're all complex human beings. We are not just one thing, right? We are not just where we live, or what we do for a living, or how we identify we are complex, right? So, when we're struggling with our housing situation, what we need to do is find other areas in our lives where we can recoup, where we can recover from that strife, right? That we can put back into our battery a little bit. For a lot of us, that can be something as simple as trying to add some joy into our lives. Trying to do some things that are fun, that are not at the house, if it's the housing situation, right? And that can be something that you do with others. It can also be something you do alone, right? You could go for a walk in the woods, right? There's a freebie activity, right? That you can do alone and buy it, right? And get fully recharged from lots of people just go to do that, to have time alone in their heads, and to have quiet and silence, right? Those things you can also do like look for other places. Philip mentioned creating groups and support groups as a place to vent, but also a place to find community, right? And to kind of feel like you do belong if you're not feeling like you belong at home. So, to find it somewhere else that feeling. But also think about volunteering. Maybe you could do some time somewhere else, right? And give your time away to somebody else that keeps you out of the house more, right? If the house is where it's coming from, it's about rebalancing our lives, right? So that we can literally what keeps you motivated and keeps you going forward and out of that depression, right? right? Finding other things to be joyous about and not focusing only on this miserable situation. When we do that, we often trap ourselves even further. We keep ourselves from seeing open doors and opportunities to move the situation when we do right? But if you're busy in other areas, right? There's again, that potential you never know who you're going to meet, or if someone might have a solution for you that you've never thought of, or anything like that. And that's how we keep our opportunities open and keep ourselves from feeling trapped.

Philip King-Lowe

Right. And then there's a matter that with regards to your sensory processing needs. Let's say you have certain sensory matters that are just overwhelming for you, but you've also got some of those sensory seeking things that you can do to help alleviate some of that additional stress. You know, Zephyr James, for example, likes to go someplace where she can, you know, twirl in the air. And kind of, you know, climb, climb ropes or whatever. And that, you know, she finds that sensory seeking to help soothe her, the ones that she's overwhelmed with. And, you know, whatever, however you like, to sensory seek, to soothe the other, uh, find, find ways to do that. Maybe find other people who do things that way again. You could find some networking, possibly some friendships that will say, Hey, this is give you the feedback that you need to know, that you know this is like. Sometimes they'll give you references. Have you checked out this group? Have you checked out that website? Have you, you know, checked in with the you know, they'll give you some ideas as to whom you might be able to reach out to in such a situation like that one. Or just, just give you a little bit of encouragement to, you know, keep fighting and keep dealing with it the best way you can. You know, part of the empowerment is finding ways to empower yourself. And you know, you know, I mean, I know what it's like to go home to someone that I just don't want to go home to. I haven't been in that situation in many, many years, but I've been there and that's rough, so sometimes you gotta find your ways of doing things to maybe, I don't know, refill your energy battery before you go back to that situation.

Becca Lory Hector

Right, it comes to us from lots of other places, right? It's, it's empowerment. Isn't just, you don't just seek to be empowered in that one area. We seek to be empowered in our lives in lots of different areas. So, when you are feeling unempowered in one place, you want to seek your empowerment from other places right? To lift you up.

After this final commercial break, Becca and I will give you some helpful resources where you can find some supports to locate a better home for yourself followed by Today’s Autistic Community Bulletin Board.

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Future Shows

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On October 6th,  Kathryn Parsons will be here for the episode Autistics Using AI.  Artificial Intelligence is the latest and hottest internet tool.  Every social media platform or software used for writing documents, collecting information, and searching has been expanded by AI. Many Autistics have contributed to creating AI programs. Yet, like any internet program, what people put into AI is what comes from AI. Kathryn Parsons will talk about the good and the bad about AI for Autistics.

On October 20th, Dr. Ludmila Praslova will be my guest for Autistics Thriving at Work. We will focus on navigating the workplace and finding ways to work with your strengths, including job-crafting, preventing burnout, and navigating disclosure. This episode celebrates October as Disability Employment Month and features Ludmila Praslova, author of The Canary Code: A Guide to Neurodiversity, Dignity, and Intersectional Belonging at Work.

Thank you for listening to Today’s Autistic Moment

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Segment 4

Philip King-Lowe

There's always some web searching you can do to maybe find things that could be helpful, you know, and of course, being on social media networks where you have others who can whom you follow. Speaking for myself, if you go onto my social media networks, on Facebook, uh, Twitter, X, uh, LinkedIn, Blue Sky or even, um, Instagram. You can see some of the people who follow me and those whom I follow who may be able to give you some good ways of finding people who can help you. I know Becca, you do a lot of advocacy on behalf of disabled people. You may find something on Becca's network that may be of help to you. You know, we've got people like Devon Price, we've got people like David Gray-Hammond. They all have resources that they follow that you may find helpful, you know, and I'm only touching the surface of those at whom you may find that may give you some great possible resources. Speaking of resources, and now that we're getting to the close of this, what are some resources that you think that people that Autistics, who are in situations where they're just living with somebody who's just not supportive, you know? And I want to reiterate, you know, those can be things like you're living in in a housing maybe you're living by yourself, but you're living in a place where you've got maybe property managers that just are not receptive to you. Believe me, I've I lived in that situation. You know, before Jason and I moved in our home, we were in an apartment complex where it was miserable. It was very difficult to get through it. And, you know, here's one of those things that I had to do to sort of advocate for myself, and it was difficult. You know, my sensory was so charged by so much of what was going on, and some days I just couldn't stand it be such that my brain just couldn't even think anymore. It was shutting down. And so, in a moment like that, I had to be very communicative with my spouse. I want to be able to help you. I want to be able to talk with you. But right now, I just simply can't, I can't do it. So, you know, and then, like, we would find a space to go out somewhere and maybe do something else, and then we could talk, you know, those types of things. So, I just want to say we're not unsympathetic to your situation. We understand, but there are some things you can do, but let's maybe give them a small handful of resources that can help them to work through their housing situation. Go ahead.

Becca Lory Hector

I would say, when you're thinking about resources, I would say my first thing to think about is stay local, right? Because when we're thinking about housing, we obviously want to be working with people that are close to us, that know our neighborhoods, that know those kind of things. So, you want to look for, if you're not already involved a local Autism organization or chapter of an Autism organization, they will likely have some beginning resources for you to start there that'll be relatively local to where you're at, right? They'll know where you're talking about, I also think I believe, and maybe double check me, Philip, before you put this out, but I believe that the arc of the United States (https://thearc.org) also has some information regarding housing on their sites. What you're going to find is a lot of government and policy like housing support, because that's where most funding comes from to support housing. When you're looking for private things and for private housing support, it's going to be a little bit more difficult to find someone who's got Autism kind of background, right? But what you can do is look for organizations that work with other marginalized or historically marginalized groups, right? Philip talks about intersectionality all the time. You're Autistic, but you're not just Autistic. You have to be part of other groups, and those other groups will also help you. They will also have some resources for you. We want to seek out community supports. So that might also come from that local chapter of an Autism organization. You can also look at some national organizations. I know that aane.org does a whole bunch of low cost and free support groups if you just want to be online and hanging out with some people who are also wanting to talk about life, and if you don't have access, right? Some of us live in parts of the country that we don't have access to right, forward thinking support. So, look for some online supports as well. A link particular to housing that I give out all the time is the Autism Housing (autismhousingnetwork.org), it's a great place to find housing specific information. The stuff that has been put on there has been gathered with Autistics in mind, and Autistics involved. So, you can take a look there for a place to begin. And then often, just remember to keep your options open and your ears open, because when you're out doing anything else, those opportunities to change your situation may come up where you least expect them. Right? You can meet someone from your support group in the grocery store, and that person might have some suggestion for you, and there you go. Right? So, we never know where it's coming from. So, we want to be open to hearing as well.

Philip King-Lowe

Yeah, I did look up the arc.org Yeah, the arc.org is the website you were mentioning Yes, yes and, and, let me just say that Arc Minnesota has been one of the greatest supporters of Today's Autistic Moment. They have been granting me grants for the past three years. Okay, now, oftentimes, arc services, wherever you happen to be, they can, they may be able to offer some grant money to help you find something else. Now, grants and stuff like that, they're, they're often a matter of need versus available funding versus, you know, and also, there's like a deadline date by which you have to apply for things. But they may have some things that could help, could help with housing, and they often will carry some recommendations of others that you might reach out to find the information you need. Arc Minnesota, and you know they are often, they are at a lot of the conference and the summit with the Autism Society of Minnesota, and I want to tell you that it is a fantastic disability supportive advocacy group, so I can echo that, Yeah, but I think that we've given everybody a great sense of you know, you know Nicole's situation is true. There's way too many of us who are caught in those situations. But I brought Becca on here today to say that you may feel trapped, but you're not trapped without some kind of keys that you can unlock for yourself to maybe find some peace in your situation. And you know, some of us have to. It's like we're basically getting the scraps of peace, if you will. But those scraps can sometimes be exactly what you need to sustain yourself, very much so.

Becca Lory Hector

Because nothing stays the same, and that's something, I guess maybe we can leave folks with this. It doesn't just stay the same, unless you want it to stay the same, right? So, you don't want to stay trapped, make sure that you are not hanging on to the key or hiding it from yourself, right? We want to make sure we're not part of that, that trapped ness, and that your part of the effort to get yourself out right now.

Philip King-Lowe

Exactly, yeah, and, you know, say you may have to find your own ways out. Yep, and, you know, and I think we can both say they may not be the easiest thing to do, but in the end, when you find that something that works, that leads you towards your pathway out, then that can be very helpful. Also. One more thing, if you are in a situation where there's some obvious abuse taking place. You know, remember that your doctors or your psychologists, psychotherapists, they are mandated reporters in a situation like that, with that can lead to services that can get you out of that situation. Group homes, they are regulated by your local government, and if there's abuse taking place in those places, they must address it, or someone else will. So, by all means, in a situation like that, it's okay to tattletale.

Becca Lory Hector

Yes. You're not tattle telling, then you're doing self-advocacy. That's what you're doing. Yeah,

Philip King-Lowe

Becca, Lory, Hector, thank you for coming on to join Nicole today. And as always, you give so many great suggestions and advice and so thank you so much for coming on.

Becca Lory Hector

It's my pleasure.

Philip King-Lowe

Thank you.

Transcribed by https://otter.ai

If you want to look up the resources that Becca and I mentioned such as thearc.org, aane.org or autismhousingnetwork.org and Arc Minnesota you can find the hyperlinks in the transcript, or go to the Adult Autism Resources Links page to find them.

Today’s Autistic Community Bulletin Board

All of these events and many others with their links can be found at todaysautisticmoment.com/bulletinboard.

The AuSM Coffee Club is a space where Autistic and Neurodivergent Adults can connect with each other, foster friendships, and build community while enjoying a favorite beverage or snack. While it is free to participate in AuSM’s Coffee Club, we ask that participants purchase something from our venue.  AuSM Coffee Club meetings begin at 5pm to 7pm on Tuesdays, October 8th, November 12th, and December 3rd at Dogwood Coffee, located at 2700 University Ave, W. St. Paul, Minnesota, Zip Code is 55114.

Understanding Autism virtual classes are offered by The Autism Society of Minnesota. These classes are perfect for Autistic individuals, caregivers, those who want to understand the basics of Autism and support Autistic people. Classes will be on November 11th at 10am. December 9th at 6pm. Classes are free of charge, but you must register to attend.

Are you a professional who works with Autistic people? Such as a therapist, psychologist, occupational therapist, psychiatrist, social worker, case manager, or health care provider?  Join the AuSM Professional Networking Group to work with The Autism Society of Minnesota’s Counseling and Consultation team that offers a resource to help you network with other professionals.  Group sessions are held monthly. See AuSM’s Event Calendar for more information.

There will be a virtual AuSM workshop on October 9th beginning at 9am to 12pm entitled Working While Autistic.  Daren Howard and Scott Schneider will be the presenters for this workshop that will explain that professional success is possible for Autistic Adults and those who support them. You will gain an understanding of key employment issues affecting the Autism Community and practical strategies for getting and keeping meaningful employment opportunities. The workshop will explore topics like career advancement, job searches, resume building, interviewing, job performance, disclosure, and accommodations from a Neurodivergent perspective. Go to the AuSM website to register.

Register today to attend the 2024 Autistic Community Summit on November 9th beginning at 10am to 4:30pm at Woodlake Lutheran Church located at 2120 W. 76th Street, Richfield, Minnesota, zip code 55423. This year’s Autistic Community Summit keynote presentation speaker will be one of Today’s Autistic Moment’s guests, AJ Locashio.  There will be in person and hybrid breakout sessions like Ask a Neurodivergent Therapist, Autistic in the 20th Century, a Panel of 50+ Adults, and a PowerPoint Party in the Hangout Room.

Go to ausm.org to get more information about these and other Social and Recreational Programs, educational events, counseling services and support groups at The Autism Society of Minnesota.

Minnesota Independence College & Community invites you to this year’s 5K race/walk on Saturday, October 5th with registration starting at 8am and the race staring at 10am at Donaldson Park located at 7434 Humbolt Avenue, in Richfield, Minnesota. The zip code is 55423. Go to the website p2p.onecause.com/micc5k for more information.  The hyperlink is in the transcript and the bulletin board on todaysautisticmoment.com.

MNeurodivergent is a social club rooted in a vision of bringing Neurodivergent Minnesotans together to build meaningful connections.  Its core principle is to foster an environment where all are treated with dignity and respect regardless of ability or preferences. Go to the bulletin board at todaysautisticmoment.com and click on the Meet Up link to become a member and attend their events.

Today’s Autistic Moment is here because of the generosity of supporters and sponsors.  Please join the supporters by clicking on “Support Today’s Autistic Moment” on todaysautisticmoment.com.

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Thank you for listening to Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult.

May you have an Autistically Amazing day.

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All of the guests meet with me on Zoom to record the interviews. The interview transcripts are provided by Otter. The podcast is prepared and edited on WavePad Masters Edition by NCH Software.  The podcast is published by Spotify for Podcasters.  The Music that you hear is licensed to Today’s Autistic Moment by premiumbeat.com.