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Hello, and welcome to the autism in real life podcast. In each episode, you'll get practical strategies by taking your journey into the joys and challenges of life with autism. I'm your host, Ilia Walsh, and I'm an educator and the parent of two young adults, one of which is on the autism spectrum. Join me as I share my experience and the experiences of others, so that we may see the unique gifts and talents of individuals on the autism spectrum, fully recognized. Hello, everyone, and welcome. This is Ilia with the spectrum Strategy Group. And I wanted to chat a little bit today about this concept of being invisible. And I think, you know, when I think about that, I think first I think about a couple things, I think, first that autism is an invisible disability, meaning we can't really see what someone's disability is on the outside, it's, it's all internal. So, and there are several disabilities that fall under this invisible disability category. So if we can't tell on the outside, there's a disability, it's an invisible, invisible disability. And I think, because of that, it is really difficult even from your childhood, for other people around around people with autism who don't know from the outside, or maybe haven't been diagnosed yet, or, you know, as I say, you know, don't have the paperwork that come with them. But yet they come into our classroom, they're in our workspace, they are coming in as clients, they're coming in as patients, and they are people who we, you know, are friends with and in relationship with. So, you know, I think, when we don't have, you know, like, we have a sign on us that says, you know, who we are, and what we come with, it makes it difficult for other people to understand what you know, what can be happening. So that's one thing. The other thing I think about when I think about invisible disability, or I should say, the word invisible, being invisible, it also makes me think of some conversations I've been having recently about autism, and Asperger's, and high functioning autism. And so I think about the language that historically has been used in the autism world. And, you know, the the move and shift away from using terms like Asperger's and high functioning autism or hcfa. Because, first, you know, in the DSM five, there is no more Asperger's. So, you know, that's the thing. And, and if you go back to some of my previous episodes, I did a mini course on what is autism, and breaking down the diagnostic criteria. And I think the terms high functioning, and Asperger's

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are something people kind of hold on to, because they think that it helps us understand what you know what type of person I'll put that in quotes we're working with if someone is diagnosed with autism. So I believe though when we say those terms, there is a set of expectations and sort of some biases, and expectations that come with saying terms like Asperger's, and high functioning autism. And so that that's one piece, I believe, people will then come to expect something that it might not be accurate. And this goes back to the term when you've seen one person with autism, you've seen one person with autism, everyone presents differently. Everyone has different strengths, different areas that are challenges at just like everyone else. So when there is a diagnosis and evaluation done, we arrive at a diagnosis that is followed up, I should say should be followed up with a set of where are these this person's strengths? What are the strengths? What are the challenges, and why did we come up with an autism diagnosis. And again, for each person, there's going to be very specific pieces. Now I think where we get where we attach the high functioning and Asperger's and I could be wrong, you know, those of you out there please help me and again, I'm not a clinician, so Oh, You know, I'm I'm basing this on my own experience and speaking with other clinicians. But usually when someone is being evaluated, there are a set, you know, battery of tests that are being done, there's probably tons of assessments being done. And coupled with autism, there may be, you know, a test for intellectual disability. So autism can be paired with another diagnosis of intellectual disability. But those are two separate things. So you might have someone and so let's just say someone says, well, they have autism, but they're high functioning. And so some people might have some images of what that means. But again, it's so varied that I don't think we can say that we can say we have someone who might be able to drive themselves to a location, but maybe when they get there, they, you know, they get overwhelmed with too much sensory input. Or maybe there are hygiene challenges, or maybe the, you know, there's a challenge with being able to prepare meals, or, you know, maybe there's, you know, I said sensory things, but that in and of itself can be varied. Maybe there is a high amount of anxiety and those all those other things could impact someone's day to day functioning, or, you know, maybe they're episodic, and they're different events. So how can we say that that is high functioning, if someone, again, I'm putting that I functioning in quotes, if that is impacting someone's ability to, you know, lead their best life, so to speak. So I think that's one bias that comes with that. I also think that when people who maybe have been diagnosed in the past with Asperger's, or the term high functioning autism, they've probably heard the term, but you don't look autistic, you don't look like you're on spectrum. And I don't think people mean that in a in a bad way. But it is so diminishing, and I feel like it's invalidating for people, where they don't know what's going on inside that person, and what you know, what challenges they might be facing, and it is also sort of diminishing, as to what that person's experience might be. So you know, it's sort of like saying, well, you don't look like someone who, you know, has blue eyes, or you don't look like someone who has brown hair. What's that supposed to look like? What is someone supposed to look like? So I would say that would be something to think about. And when we're working with individuals, or you know, we have friends, or we're in relationship or their employees or whatever, we start thinking about those terms, and kind of separate them out and really look at someone holistically and look at someone as the individual that they are just like we would do with everyone else. And, you know, this is,

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it is a topic of interest, because it's a hot topic in the autism world right now about using some of these terms, and how they can also be, you know, not inclusive, so I guess we could say they're exclusive. But that doesn't, that's not quite what I mean, they're not inclusionary terms. So when we say that we're excluding people that are on the autism spectrum, and some people have feel like have felt like it's sort of almost creating a divide within the autism community itself. And I'm actually going to be podcasting with someone in the coming weeks around the divide in the autism community. And it's sort of something that's been, you know, hanging in my brain, because I've been having several meetings with a lot of people over the last few weeks, and this topic kind of keeps coming up. And so I want to address it head on. And I'm podcasting with Russell Lehman, and a couple of weeks and we are talking about the topic will be the divide in the autism community. And I know we'll be talking about this topic, as well as a few other things that are happening. But I think all of us want to make the autism community a more inclusive, and more safe space for everyone. And, you know, bridging the gap is going to be super important. And I think you know, how we use language and how we connect with other people and what our perceptions are and what our biases may be about certain words or around certain words. Is is critical in sort of bridging that gap and bridging that divide. So I asked, you know, again, I always have a question about, you know, asking you to think a little bit about how that how this fits with you. And I would really love to hear from everybody. I want to know people perspectives and I want to know what they're thinking. So please, please, you know, message me and let me know you know what, what your thoughts are around this topic or if you have any other ideas or any other topics you'd like me to cover, please let me know. Well, thank you so much for listening in and I will talk to you soon. Take care. Thanks for listening to autism in real life. This is Ilia Walsh. And if you like the show, please hit subscribe so you can get notified each time a new episode is released. I also offer training consultations and parent coaching. I would love to help you in any way that I can. You can check out my offerings at the spectrum strategy calm and when you join my email list, you can get a code to receive a discount off of an online class or a coaching session. Looking forward to hearing from you Take care and see you next time.

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