Go to todaysautisticmoment.com for the transcript
April is Autism Acceptance Month. Ellie Wilson, the Executive Director at The Autism Society of Minnesota joins me to talk about the importance of Autism Acceptance. --- Support this podcast: https://anchor.fm/2daysautistic/support
Autistic Adults and Autism Acceptance
April 5, 2021
[You will notice that some words have a strike through font. These are to reflect the new website created in September 2022]
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 much for listening.
This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota: Minnesota’s First Autism Resource. The Autism Society of Minnesota has been serving Minnesota’s Autism Community for the past 50 years. Visit them online at ausm.org to register for the conference April 21-24th.
Go to todaysautisticmoment.com for podcast updates, news, new episodes, the autism resources links page, and the store. Celebrate April as Autism Acceptance Month by visiting the store page to shop for a custom-made tee-shirt in the color of your choice. I will be donating 15% of the total of all shirts sold to the Autism Society of Minnesota in May. While in the store, shop for books by authors such as Temple Grandin, Cynthia Kim, Samuel J. Levine and the Autistic Women’s and Nonbinary Network. Shop for some cool fidgets, weighted blankets and a silicone bracket to keep the material of facemasks off of your skin. If you are looking for the program script with my announcements and a transcript of the interview, go to new podcast episodes and/or the episode index page to download them. Transcripts are sponsored by GT Independence.
April for many is known as Autism Awareness Month. Autism awareness was (and still is) an important movement designed to help more people become aware of autistic individuals, and the challenges we live with. Autism awareness is a good thing in how it has been helped people become aware of Autistic individuals and that we are now more visible to others around us.
While Autism Awareness really does assist Autistic Adults, it only brings us so far. If we give the analogy of going to someone’s home, Autism Awareness means we are on the front steps ringing the doorbell. Autism Acceptance means the door is wide open and we are welcomed into the home, and fully accepted for who we are. Autism Acceptance means that people accept Autistics as valuable contributors to the common good of society, and that we can participate fully to achieve our potential. Autism Acceptance is a real smack down to ableism for Autistics. Autism Acceptance is the opportunity to fully reject those who still believe that autism is a disease or epidemic and needs to be “fixed or cured,” and for Autistic individuals to be wonderfully unique people just as we are.
Ellie Wilson is the Executive Director of The Autism Society of Minnesota. Ellie has been leading The Autism Society of Minnesota, and Minnesota’s Autism Community from Autism Awareness to Autism Acceptance. Ellie is my guest on Today’s Autistic Moment to talk about why it is so important to move from Autism Awareness to Autism Acceptance.
Just a reminder that this episode is the first that will have three commercial breaks and five segments. After this first commercial break, Ellie Wilson will join me to talk about Autistic Adults and Autism Acceptance. Stay tuned.
Commercial Break I
Philip King-Lowe
So Ellie, um, it is April, and it is now Autism Acceptance Month, also known as Autism Awareness Month. In the past couple of years, I have noticed that that that word has been changing, especially from the position of the Autism Society, Minnesota, moving from Autism, Awareness to Autism Acceptance. And so, um, I think that's a great idea. But I think it's also important that people hear about why we're making that move, and why that move is so important. And you are the Executive Director of the Autism Society, Minnesota. And I can't thank you and the folks at the Autism Society of Minnesota enough for all that you have done to support my life as an Autistic. So I wanted to start Autism Acceptance Month, by having you come on to talk about this, this subject and why this is so important. And so, allow me to ask you, what information do autistic adults and our caregivers need to know about when it comes to Autism Acceptance?
Ellie Wilson
Well, first, thank you for having me, Philip, and thank you for your kind comments about the Autism Society of Minnesota. You know the feeling is mutual. And we're very excited about your project. And I think this is a cool opportunity to come and get to talk to you. So I think your question is a great one. And I'm so glad to spend some time on it. Because I think it matters to a lot of Autistic people that we stop and examine, you know, the difference between intention and, and sort of impact and outcome. Because at first brush, you would think Autism Awareness is a good thing. You know, there have been many times throughout history where autism was not well recognized or understood, or perhaps the only sort of version of autism was one that people only understood as being very stereotypical or very narrow. And, of course, what we are learning more and better all the time is that the Autistic Community is in fact, incredibly diverse. And I think that that's sort of the first, the first thing that we really want to think about is that we have a huge responsibility and huge opportunity to think about all the wonderful complexity that comes with this community. And given that complexity, I think the first step should always be talking to diverse Autistic people. And I will tell you over and over and over again, we have heard from Autistic Adults, that Autism Awareness can actually be a pretty triggering concept. And I'd love to talk about why that is today. If I can ask Philip, you know, I'm also interested in knowing what you think about the word awareness. When you first heard Autism Awareness, did you have a personal risk sort of response or reflection to what that word meant? Did it mean anything to you?
Philip King-Lowe
Well, it was a new word for me. And I saw it as a great opportunity to make people aware of what autism is, especially since autism is not that well understood, especially in adults. So I saw that as a positive, not a negative in terms of helping people to help people open their eyes and turn to what autism is and how it is recognized. And you know, I started using that word, especially while I was taking the class on the certification for direct care support. And so I personally found that very, a good thing myself. Um, but then a couple about a year or so ago, I remember hearing Robyn was the first person who used those words Autism Acceptance. And I think the first time I heard those words, I'm like, what are we doing with that? And I think I think the way I understood it, and still understand it, it's it's moving away from being aware of somebody, which is not not the worst thing. It's being at least aware that there's a person around us who is different than others. But accepting that person is going the next step.
Ellie Wilson
Yeah, absolutely, I think I think that's really right on. And I think we can kind of talk about both things today. Because you're right, awareness in and of itself is not necessarily bad. I would say if anything, it's probably pretty close to neutral. It's kind of like, the the lowest bar that we want to be able to clear is, of course, we want people to know how prevalent the autism experience really is. And I think that's something that as the years go by, we have seen a change in you know, I'm in my early 30s. And when I was a kid, I don't think I knew anybody who had an autism label that I was aware of, you know, it's, it's absolutely true that I grew up, knowing what it meant for someone to have a disability, and maybe even knowing what it meant for someone to have, you know, an intellectual disability, I think I had some concept of that. But of course, a that's not everybody with autism. And b, it was not common that people were using any sort of, sort of common language around that meant. And so I think for a long time, there was a really important need to be more aware, you know, we have seen the prevalence rates of autism rise year after year in this country and in this world. And even that is something sort of worth taking a step back and looking at because, of course, many people say, Oh, my gosh, you know, we're quote, unquote, in "an autism epidemic," which is ridiculous, you know, we know for sure that while there may be more autism than there used to be, we are also incredibly aware of the fact that until, you know, the end of the most recent century, we were not thinking about the broad autism spectrum, and everybody it includes, and we weren't even really thinking about the ways in which autism could be differentiated from other disabilities. And so, you know, for a long time, I think awareness was the right goal, because I really have a concept for what it meant to be autistic. And that's the danger of that is that that's when you fall into sort of stereotypical thinking.
Philip King-Lowe
Right. Yeah. And we also know that it's only within the last, say, 20 years, that they've, were beginning to recognize the existence of autism in adults. When I was first diagnosed in 2013 (this should be 2011), among the first things that Dr. Foster said to me is that the field of adults with autism even though we were still calling it Asperger's, that's a time you know, we were using that word. But you know, that finding people who specialized in that field for adults was not as wide known as it was for children.
Ellie Wilson
Absolutely. And I know many adults, we probably both know many adults, Philip, who are still kind of up against that battle of being able to receive an accurate and sort of helpful and informative diagnosis. We know tons of adults whose experience is Look, when I was a kid, autism wasn't a label that was given to many people, and especially amongst adults who, you know, are somewhat independent or you know, don't require of a full time level of support. The nuance of the invisible disability that is Autism is one that was lost on a lot of people. And so we hear over and over at the Autism Society stories from Autistic Adults who are you know, 30 40 50 60 years old, that say, I've been diagnosed with everything under the sun. And it wasn't until I understood more about autism that I realized that this is the right label and the right identity for me as well as sort of my place in the world. And I do think that the awareness movement is part of what drives the ability for Autistic Adults to find what they need in this day and age. But it's a big thing. And for that reason, I don't think that we need to discredit the importance of awareness. However, many of us feel that, you know, we are not satisfied with awareness alone. And exactly as you indicated, you know, to be aware of someone is not necessarily the same thing, as you know, being supportive of someone being inclusive of someone, thinking of that person as valuable and necessary and worthy of celebration.
Philip King-Lowe
Right!
Ellie Wilson
This is where we kind of realized, like, Oh, we are on the precipice of a really exciting time for the Autism Community in which we can kind of put awareness under our feet and say, from here, we want to go higher, you know, exactly. This is our opportunity to really begin a new phase of work, where we are thinking about all of the elements of accessibility and inclusion, that actually have a meaningful impact on autistic people, no matter how old they are, no matter where they live, you know, no matter what level of support they need.
Philip King-Lowe
Yeah, this goes, this goes back to the topic I talked with Robyn a few episodes ago to neurodiversity, where we work from the point of, okay, being aware of us is one thing, but as long as you're just aware of us that implicates that, well, being aware, but not necessarily be accepting is saying, well, that because we're aware of you, that doesn't mean we have to accept you. And what we're saying is Autism Acceptance says, Yes, we do need to be accepted. No, we are not curable. We are you know, we can be educated and we can let be learned how to manage, but no, we're not here to be fixed, or, or corrected or, or altered or that sort of thing.
Ellie Wilson
Philip, I think a lot of people, especially neurotypical people, of which, you know, I'm guilty of being neurotypical. So that's not as not as cool as being autistic. But I will say that a lot of neurotypical people don't understand the sort of inherent relationship between what you just said, you know, that there's an inherent relationship between awareness and, and a little bit of harm for Autistic people. And that's something that I think we should talk about, briefly before we sort of move on to thinking about acceptance, because I don't think I don't think people necessarily have malice when they talk about Autism Awareness. But I think it's the lack of perspective, the last lack of Autistic perspective, frankly, that leads people to believe like, Oh, this is a good thing for Autistic people.
Ellie Wilson
And, you know, part of that is really about the historic way in which people have talked about autism at all. And this is the thing that I'm so thankful that you brought up because I think it'll really resonate with a lot of your audience, which is that historically, when autism was brought up, it was brought up as, you know, a disease a disorder. A problem and in many cases, you know, a tragedy. Exactly. That is the product of a whole lot of things in our society, you know, product of our sort of medical model, were dosed with something inherently you think you want to be cured of that something. It also has to do with the narrative being driven by a lot of probably good intentioned people who think there's a diagnosis here, therefore, you know, what, what's on the table that we can fix? You know, exactly what kind of interventions do we need, what kind of supports do we need? And this is where it gets a little bit of a gray area because a lot of autistic people do need support. And yeah, we have problems on sort of the other end of you know, the situation with is that people's support needs are not acknowledged enough. And this is where like it gets squishy, you know, it's hard to sort of hold space for all of those problems at once. But the fact of the matter is that a lot of autistic people, especially those who are teens, young adults, older adults, are internally battling this idea that there's something wrong with them. And yeah, sort of something that they have to overcome in order to be part of the world as they know it.
Philip King-Lowe
Exactly. Yeah. And, you know, this is a great place to cross into my my second question, which is always what are the barriers for autistic adults of all ages when it comes to Autism Acceptance, and we're already into a lot of those. A few episodes ago, when I was talking just to to Sue Swenson about ableism, I happen to think that one of the tragedies of ableism for Autistic individuals, is that there is an unavoidable consequence of having some kind of internalized ableism that says that I have to become a, you know, I have to become more than what I am, better than what I am. Because somehow this being Autistic is such a negative, it's so is so destructive. And this is where I myself had made had to make an incredible journey. And this is where AuSM has been such an asset to my life, is walking from that space of feeling like, and I'm gonna say it, I had a, I had a long time for many years where I was feeling like a complete social invalid, because I was Autistic. I felt like I couldn't get along with anybody, I couldn't create friendships or anything. And what the Autism Society through many of its its classes and its perspective, has really helped me learn to embrace is that I am Autistic. And therefore I am a good individual, a different individual. And that's okay. Even though I do what I do, because I'm Autistic, and I think we can, I think it's fair to say, Autism Acceptance says, Yes, that's right. It is okay to be Autistic. It is okay to be different. And that is what that is why it is such a barrier. And I think what I hear you saying, while Autism Awareness is a good thing, it also because it is also a barrier to acceptance
Ellie Wilson
In ways that I think are tricky. You know, this is why it's really great that we can have a long conversation about this, because again, at first blush, it doesn't look like a malignant concept.
Philip King-Lowe
No, it doesn't. And you know?
Ellie Wilson
Like, this is why, you know, having access to the perspective of Autistic people is incredibly important. Because, you know, people who, who have campaigns for Autism Awareness, they clearly care about autism, they clearly care about autistic people. But just like so many other marginalized groups, if you don't have the voices of the autistic experience at the table, then you can, you know, potentially miss the mark of what it is that is really profoundly impactful. For Autistic folks. Yeah, I just think that this is where we have such a, I happen to believe that it's sort of a mix, you know, I think we have a responsibility to be thinking about the things that we can change the language, we can change, you know, the mentality and the attitude that we can change. You know, I do look at that as a responsibility, but I also look at that as an opportunity. Because the fact of the matter is, you know, especially in 2021, I feel like many of this sort of general public are awakening to the value of all diversity, but also, you know, the inherent barriers to really accessing voices that are typically not amplified.
Philip King-Lowe
Yeah.
Ellie Wilson
And it's in this space that I think we are all developing, you know, our sense of profound appreciation for the fact that just because I might be part of the majority, you know, just because I might be neurotypical, or I might be white or I might be, you know, from living in a position of relative privilege, that that does not mean that my story is the quote unquote, "normal story." You know, we have a, we have a therapist at the Autism Society who says, a "normal as a setting on a washing machine, it does not actually refer to a single person." I love that. I love it too. And I think there's something in just like incredibly and profoundly true about the fact that the concept of normal is really just not helpful. And, and we have something we have, there's something really exciting about being able to look at any group of people, and especially those that are neurodiverse, or autistic and saying, my way of thinking or my way of processing is not inherently better than yours. In fact, we have incredible things we can learn from each other. And it is aberration across ways of thinking that I actually think is like, the secret to life. And I think we're all looking for, you know, yeah.
Commercial Break II
Philip King-Lowe
Yeah. I think one of the barriers for Autistic Adults, as far as Autism Acceptance, do we accept ourselves as valid autistic people? You know, and I mean, a lot of this comes from, you know, how we're often stereotyped. Um, this is why I do fight against those terms, high and low functioning, because they do allude to some some meanings, that suggests it's not acceptance as a functioning matter. You know, and we know that one of those consequences is a presumption of competence. And this could be said, of whether someone is quote unquote, "high or low function. "There's something we're incompetent about.
Ellie Wilson
Yeah. Just like, just like our topic today of acceptance versus awareness, like language has power and labels have power. And sometimes that power has good outcomes. And sometimes it doesn't. And, you know, when I think about someone having access to the label of being autistic, I think, you know, what an incredible asset what what a what an incredible framework by which someone can begin to accept themselves and begin to ask for the supports that they need in a way that we can hold people accountable for, you know, that's a, that's a really benefit of a label. But, you know, we all recognize also that, that labels can also cause some harm and not necessarily just the autistic label. Although, in reality, many people experience prejudice and stigma associated with a diagnosis. I don't want to I don't want to diminish the reality of that. Those sort of unofficial labels that you mentioned, like high functioning and low functioning, I think there's a real argument to be made that those do more harm than good. Yes. I think some people look at our field and they think, oh, you Disability Advocates? You guys are obsessed with language? You know, you Why are you so you know, concerned with being quote unquote, "politically correct." And it's like, oh, that's not it at all. You know, this is not about there being a right or wrong way. It's about knowing that whether we like it or not, words, and labels make an enormous difference in this sort of public's conceptualization and any given person's conceptualization about what their diagnosis can mean. And so to me, this is effort incredibly well spent.
Philip King-Lowe
Yeah. Do you think that one of those barriers because I've been thinking about this for a while, one of those barriers is because of autistics being ashamed of being autistic?
Ellie Wilson
You know, I, I thank you for asking. And I have some things to say though, I think it's important where I have to acknowledge my own limitation, which is that I'm not autistic, but I love a lot of autistic people, and I'm close with a lot of autistic people. And while many of them do not articulate specifically that they feel ashamed, I think, in many cases, they do feel rejected at times, you know, they feel defeated at times. They feel frustrated at times. And I think those are the precursors to shame, even if that's not something that they talk about with me or with anyone all the time. And, you know, this is where a transition to some thinking about not just who's diagnosed and who's not. But what kind of world do we live in? And what kind of systems do we have that interact with people with disabilities, you know, we have a really cool presentation at AuSM, where we talk about what's called the social model of disability. And, you know, you and I mentioned the medical model, which is, you get diagnosed, and somebody with a lot of letters at the end of their name talks to you about all the things you can fix. And in some ways, that's not a completely unimportant system, we still need it for some things. Right! That's social model understanding of disability is that a person's disability is defined not by them, but by their environment, and how accessible or inaccessible, that environment is to accommodating their needs. Right. You know, you probably, I mean, I don't, I don't want to speak for you. But just to give an example, you know, you probably don't feel the sense of rejection, or frustration or anxiety that you might feel, you know, when you're sort of out in the general public, as you do at the Autism Society, because we're intentional, they're about creating a space where we understand if we just tweak this environment a little bit, people are invited to be the best version of themselves, they're invited to bring their skills to the table, they're invited to ask for the supports that they need, because they've got the confidence that they're going to get them. And you know, that creating that kind of environment, frankly, takes away a lot of those sort of negative infrastructure of disability and turns it into, you know, equality and acceptance and celebration. And that's something that we hope we can begin to replicate in larger circles, you know, all around the state all around the country all around the world.
Philip King-Lowe
Right. And before I launch into my last question, this is one of those places that I've really come to cherish working with the Autism Society of Minnesota as an educational assistant. And even the work I did with Robyn. Among the things I feel like I can, I can appreciate I do appreciate, is that when I am experiencing one of my anxiety moments, high anxiety moments over anything, or even, you know, my sensory is overloaded, I'm tired, I can't push myself to do something. And someone like Eric, or even Robyn would say to me, it's okay, we understand. You give us that room to it's okay that you experience these things, we're not going to, you know, look down at you, we're not going to, you know, to shame you, we're not going to tell you, you shouldn't feel this way. It's okay that you feel this way we, we understand that's coming. That is again, something I've come to really appreciate. But now we want to talk about advocating. Because I love giving Autistic Adults, the power to advocate for themselves and give them some of those tools to advocate for themselves. So what are some steps that Autistic Adults and our supporters need to take to advocate for Autism Acceptance?
Ellie Wilson
Yeah, that's a great question. And I'd like to start in things that are kind of more global, and then we can maybe move to things that are a little bit more specific. But you know, I think some of the principles of Autism Acceptance or sort of the thinking that allows Autism Acceptance are some really great habits that we can all build, you know, both in our personal lives and also in all the environments and communities in which we are a part. One of those things I think is just a general attitude of, you know, what we call in our field person centeredness, which is again, this idea that there are no you know, people in the aggregate don't really have identity, personal identity. Personal strength, personal needs are what really matters. And when we're thinking about people, one at a time, and and really trying to embrace and understand how they embody their entire identity, you know, their intersectional identity. This is one of the first things we can do to just sort of set our minds to the fact that we got to stop categorizing people and start thinking about people as individuals. Of course, there's power in community, but community is built by people. That's the that's the building block that we're starting off grid. I think that's one sort of attitudinal thing where you got to try to catch yourself when you start thinking like, oh, all autistic people, and it's like, wait, wait, stop, your sentence begins with all autistic people, you're probably leading yourself astray. Yeah. I think the second thing is about really engaging what we call sort of a "strength spaced mindset." Right, you know, autistic people do have needs don't get me wrong, all humans have needs, first of all, and autistic people have a couple of specific needs that we need to learn as a society to better provide like, absolutely. But in general, you know, nobody likes to be described as the sum of their challenges, you know, like, what, what people deserve is an opportunity to be considered for, what they're good at, and what their talents are, what their unique perspective is what they bring to the table. And exactly, I think that even if you are in a position to support someone who's autistic, through traditional medical models, or therapies or quote, unquote, "interventions," you're doing everybody a favor, if if those supports are dictated by the strengths that we want to lift up, instead of the challenges that we want to belittle.
Philip King-Lowe
Exactly
Ellie Wilson
I think, you know, it's a mind frame change that actually has really important impacts as you start to think about more concrete ways that we are, you know, performing advocacy at the individual and community level.
Philip King-Lowe
Agreed. Yeah,
Ellie Wilson
I think are like kind of those big overarching things to try to push ourselves, you and I don't think that's specific to autism. Frankly, I think those are good ways to think about all people. Right. So that's what I would, I would suggest that we start, and I think, from their advocacy, can take so many forms, you know, I have some incredible colleagues that are thinking about advocacy at the highest levels, we're thinking about policies that help offer protection, inclusion and access to autistic and disabled people, you know, from the letter of the law, and how the laws are written and how policies are written at the federal level at the state level, you know, at the sort of administrative level. That's an incredibly powerful form of advocacy. And if we're carrying that same spirit of person centeredness, and strength based inclusion, you know, we're going to see that those policies are going to start to offer protections and, and access that has been denied to a lot of autistic people for all of history, basically. Yeah.
Philip King-Lowe
Yes. And as long as we're here, I always talk about this on my shows. And one of those ways that we advocate for ourselves. And we can advocate for Autism Acceptance, is to tell people our stories about what being autistic means for us. Um, I think sometimes we get silenced by those who may say, Well, don't talk about your autism quite so much. Because it's, you know, you know how people will react. My response to that is to say, No, quite frankly, the more you might listen to, the more you might actually get it. Because, because if you're not, you know, if you're not hearing it from an Autistic person, what being Autistic means for them, whatever it is that it means to them, then you're not really hearing the stories of how people advocate for themselves. When somebody says, I really can't be in a space where the lights are bright. That is an Autistic telling their story. You know, and so Autism Acceptance is a form of is self advocacy in saying I am Autistic, the lights are too bright. And that doesn't necessarily mean that something's wrong. It's something that's different. And it is okay. It is not. It does not mean that I am any less than somebody who puts up with it or can tolerate. It's just that I'm different.
Ellie Wilson
Yeah, absolutely. You know, my colleagues right now at the Autism Society of Minnesota are working on a bill that would provide assurance for autistic people and other people with invisible disabilities, to be able to access accommodations at all kinds of community venues, whether it's, you know, museums, or zoos, or movie theaters, or, you know, other places, like libraries, and courtrooms, and, you know, concerts and everything you could and all the places people are, you know, people don't know that they are necessarily excluding Autistic individuals, if they don't hear those stories, and it's not fair to put the burden on Autistic people to teach the entire world. I mean, that's part of why places like the Autism Society exists so that we can, you know, put really good resources and attention into sort of helping bear that burden, because there is something about that that is a little bit unfair. But, you know, I think the idea that you share here is this idea that, yeah, the personal story of your experience in not being able to go places that are only lit with fluorescent light, you know, some sometimes we have to define the prejudice that we experience, because otherwise people don't know that it's prejudice.
Philip King-Lowe
Right, right. Yeah.
Ellie Wilson
And so this is where I think I really like the point that you're making this as a totally simple story about your experience, that, you know, you don't need a law degree to be able to talk about what your own experiences and your participation of the community, I think people sometimes underestimate the value of those personal stories, but the fact of the matter is that our currency, in our ability to change all things, lies in those personal experiences. And yes, you know, I think that a lot of people would be really empowered, would feel really empowered to know that their stories can really make a difference. And in fact, it is their stories that make the most difference, when we're trying to affect change for everybody. Right. Now, I'm sorry, on the other hand, not everybody, you know, that level of advocacy doesn't necessarily speak to everybody, you know, not everybody, sort of, you know, like, we hear a lot, like, I'm not political, or really uncomfortable public speaking publicly, or, you know, I, I just am still looking for ways to sort of hone my stories to be relevant to these larger issues. You know, capital A advocacy is not the only way to advocate. Not at all. And this is where I hope Philip, we can talk a little bit about all the ways that advocacy can be embodied in small circles as well.
Philip King-Lowe
Right. And advocacy is also also means networking with each other.
Ellie Wilson
Yeah, absolutely. Because I think that makes people feel empowered as well. You know, when you know that your experience is not unique to you, especially if you're carrying that sort of shadow of worry and shame that there's something wrong with you, you know, part of what part of what helps release those feelings so that they aren't a burden anymore, is understand tons of people who are just like you, and they don't have to be identical to you in order to share your sentiment and your experience. And I think you're right, I think networking is an excellent form of advocacy, even if it feels indirect, you know, yeah, doesn't make it any less important.
Philip King-Lowe
Yeah. And to this point, I want to give a shout out to one of our favorite groups on Facebook, called MN Autistics and Allies. What a great job they're doing in there of giving a space for Autistics and caregivers of Autistic people to talk about, "Hey, this is happening to me, what do I do," and for Autistics and, and other supporters to say, to give their feedback, you know, "I'm sorry, you experienced that because that's really difficult," but people who are identifying with each other, that too, is a form of self advocacy, just finding that space where you are accepted, and that, you know that that a space like that can help people to learn how to speak up for themselves. And also, you know, find their resources. You know, I happen to believe that finding resources as part of self advocacy, and part of acceptance.
Ellie Wilson
Exactly. I think that's a big, I think that's a big goal of a lot of advocacy is getting to the place where you're supported enough that acceptance is easier, you know?
Philip King-Lowe
Yeah, absolutely.
Ellie Wilson
And I think, I think that your point is so well taken, and that you can think about that, in different sizes of communities, you know, Minnesota Autistics and Allies is an absolutely sort of wonderful and groundbreaking resource to be attached to a very fast growing large community. You know, people also belong to communities, the size of their families, or, you know, their groups of friends, or their, you know, their schools or their places of work. And this is, it's not always about getting up on, you know, the soapbox or the podium. And, and disclosing everything about your disability to the world like that is not, that is not what's expected of self advocates. Right, right. But recognizing the power of opening that dialogue, in all of those small settings, even if it comes with challenges, you know, and I think we should acknowledge, sometimes it does come with challenges. And again, this is where your point about networking, or about being connected to resources, this is what can really help people get through some of those challenging conversations that don't always go right the first time. I claim, fact of the matter is, all of our lives are made up by all of those little circles that were a part of, and having the opportunity to dialogue about, you know, what the artistic processing is in those places, I just think ultimately is incredibly valuable, not just for the autistic person, but for everybody. And this is great. Get back to that point that like, the key to life, the key in the whole wide world. Yeah, is sort of being able to look around you and know that no matter how different we are, differently we think, or how what our different needs are to get through the day. There is no right. And there is no normal, there is a neat sort of value in all of us. And that that I think, is something worth driving at even with hard times.
Philip King-Lowe
Yeah.
Commercial Break III
Future Shows
I have exciting episodes and topics coming up that are planned through July.
On April 19th, I will publish the episode Autistic Adults and Community Based Services with guest Sara Swan, the founder of Looking Forward Life Coaching. Sara and I will talk about what is happening to many Autistics in the State of Minnesota in terms of accessing important services such as Medical Assistance, Community Access Disability Inclusion (CADI) Waivers to get PCA’s, homemakers, Independent Living Skills Workers, and other services. What we will be sharing will not be pleasant, but it is past time that this subject be discussed openly to hopefully lead to some radical changes for Autistic Adults and our caregivers.
In May, Dan Carmichael an Autistic from GT Independence will join me to talk about Living Independently, Samuel J. Levine, Jewish Author and Law Professor will talk about Justice in Employment for Autistic Adults. In June, the topics will be Autistic Adults and Our Diverse Sexual Orientations and Gender Identities. And finally, in July, the topics will be Autistic Adults and Financial Planning and Autistic Adults: Media Portrayal or Betrayal?
I hope you will listen to these great installments with amazing guests.
Thank you for listening to Today’s Autistic Moment.
Philip King-Lowe
What are some resources that some people can look into?
Ellie Wilson
Absolutely, I think I, you know, I always, of course, recommend that people are welcome at the Autism Society of Minnesota, we have a website, that's www.ausm.org. We have a general phone line, and a general email that is open to absolutely any question or statement that you would ever want to make. Even if you're not really sure of how to connect, you know, pretty much all you have to do is, is send up any flag to us. And we will help begin the dialogue. We have people that come to us not really knowing what it is that they're looking for. And that's totally fine. That's part of our job is to help figure out what are the steps that are going to be right for every person that comes across our path? Yes. So of course, we recommend that but also know that when you come to the Autism Society, you, we are kind of a gatekeeper of a number of resources that aren't just our own organization. Depending on where you live, or how old you are, or you know, what you're interested in, we can help set the path to finding resources that are going to be right for you, whether those are classes or books or other media that you could listen to, you know, whether it's an opportunity to be a part of a social group or a support group, whether you want to be connected to you know, as Philip has pointed out here, a resource that, you know, would enable you to be more involved in the community you care about. The diversity of resources we can offer is boundless. And so, you know, I hate to reduce it to like, just call us but the fact of the matter is like, that's a really good first step. And even if you call us and we send you to somewhere else, and that's the end of your relationship with us, we still see that as a really great service that we can provide to anyone who's kind of looking for their path.
Philip King-Lowe
Yeah. Very well. Well, Ellie, I want to thank you so much for coming on today. You've given so much information and some great responses to the questions I've asked. And, you know, needless to say, you already you already know that I'm a great fan of AuSM. That's among the reasons why I'm partnered with you, and all the great work that you've done to help me and many other Autistics in Minnesota and most likely beyond. So Ellie, thank you so much for being on today.
Ellie Wilson
Yeah the pleasure is all mine and all AuSM's. And we we so support the dialogue that you're creating. Philip, thank you so much for inviting us and we we can't wait to hear your future episodes.
Philip King-Lowe
Thank you.
Transcribed by https://otter.ai
Today’s Autistic Community Bulletin Board
If you live in the State of Minnesota, contact your State Representative and ask them to support Minnesota House File 1362 to help Parents with Disabled Children have better access to accommodations for inclusive educational services. School districts would be required to listen for the requests of parents and guardians for accommodations and be sure the parents and students get respectful responses.
Ask your State Representative and Senator to support House File 193 and Senate File 1349 that would require that emergency shelters and domestic violence shelters to provide accessibility for people with disabilities.
On April 13th, from 7-9pm I will be presenting a virtual Skillshop about Aging Autistic Adults at the Autism Society of Minnesota. Many of you may have listened to my episode Aging Autistic Adults: What We Needed Yesterday with Dr. Theresa Regan. During the virtual skillshop I will mention much of what Dr. Regan spoke of, and some additional information about the barriers for aging autistic adults and some self-advocacy.
On April 27th, from 7-9pm, Beth Pitchford will present a skillshop called Friendship: How to Find and Keep Friends as An Autistic Adult. Many people on the autistic spectrum have lots of social challenges to find and maintain friendships. Beth will give some tips for building strong friendships and maintaining them during the COVID-19 pandemic while we need to keep social distancing.
Steps for Autism in Minnesota will take place on Sunday, May 23rd, 2021 from 9am to 12pm at Como Lakeside Pavilion on 1360 Lexington Pkwy. N. in St. Paul, MN. With safety in mind and social distancing in place, AuSM will offer participants a walk route, fun activities, an autism resource fair and opportunities for community connections. Those who prefer virtual access will find autism business and organizational resources at ausm.org and will be able to walk their favorite route in their own and on their own time.
Join the Autism Society of Minnesota for the Virtual Joint Conference April 21st through the 24th. You’ll learn from five amazing keynote speakers and dozens of breakout sessions of various topics. Visit ausm.org to register and learn about other educational opportunities.
One last note, earlier in my interview with Ellie, I mistakenly said that I was diagnosed in 2013. I was diagnosed as autistic in 2011.
Thank you for listening to Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult.