Indispensable People
Making the Gospel Accessible to people of ALL abilities so that they may know Christ, grow in Him, and serve Him with the gifts He has given them.
Indispensable People
Autism Labeling: Beyond the DSM-5
The evolution of autism terminology has shifted dramatically over time, from PDD-NOS and Asperger's to the current three levels of autism in the DSM-5. Understanding these changes helps church leaders better serve individuals with autism while recognizing that getting to know each person is far more valuable than relying on diagnostic labels.
• Over 65 million Americans (25% of the population) have a disability, yet 80% are not inside church walls
• Temple Grandin believes removing Asperger's syndrome from the DSM-5 was a significant mistake
• Parents often use varied descriptors because a single label cannot fully capture their child's experience
• The debate between person-first and identity-first language reflects different approaches to disability identity
• Current DSM-5 categorizes autism into three levels based on required support
• Always start by assuming competence rather than limitations
• Understanding autism terminology helps facilitate better conversations with families
• Our identity as Christ-followers should take precedence over any other identifier
Visit indispensable-people.com for deeper dives into these topics and check out "The Indispensable Kid" and "Gospel, Accessibility and the Indispensable People" on Amazon.
Hi, my name is Tracy Correll and welcome to Indispensable People. I'm a wife, mom, teacher, pastor and missionary, and I believe that every person should have the opportunity to know Christ, grow in Him and serve Him with the gifts that he has given, no matter their ability. Over 65 million Americans have a disability. That's 25% of the population. However, over 80% of them are not inside the walls of our church. Let's dive into those hard topics biblical foundations, perceptions and world-changing ideas.
Speaker 1:Hey, hey, and welcome to this episode of Indispensable People. I'm so glad that you have joined and I am ready to talk about and define some things about autism. And this stems from I just recently saw a reel on Facebook yes, I'm an old lady and I do look at Facebook, at least that's what my kids tell me and the poster is Life with Severe Autism. That's the title of the poster and it was with Temple Grandin. It was an interview that was being done that was talking about the DSM-5 and how Asperger's syndrome was removed from the DSM-5 and how Temple felt about that. Now, temple Grandin is an incredible individual who's diagnosed with autism and has been a motivational speaker, a definer of autism and a redefiner of autism. I would say I have never gotten to see Temple Grandin speak. I have listened to some of her things but I really regret she was in the area where I live and I didn't get to get there while I was in college. I was taking special ed classes when I was doing my education degree and I will always forget or always regret not having had that opportunity to hear her speak. Because there is again, let me preface this with every person's experience is different and the reasons why they think the way they think are very much based on their life's experience and the things that they have had to walk through and deal with. And autism has. The defining factors of autism have, I don't want to say, changed. The name tags, the labels, the way of speaking about autism has changed so much over the years, has changed so much over the years.
Speaker 1:So I, when I was teaching, one of the children in my class, was initially diagnosed with PDD-NOS, which was a like we think you have autism, but we don't really know that you have autism and but there are some characteristics that apply. And then there was, after PDD-NOS, was Asperger's and so that's like we know you do, but it's not so significant and so severe. You definitely have to learn some strategies and maybe you might be a little bit more socially awkward. Communication is not so much of an issue. Socially awkward Communication is not so much of an issue. So there are different.
Speaker 1:And then you have, you know, into the actual autism diagnosis and now we have moved into levels of autism and I will tell you the names and the labels are still out there in all the different forms and it really depends on the person that you speak to and the interaction that you have, because I get to be a part of leading the special needs team for the Assemblies of God, for general counsel. I get to minister to kiddos of pastors from all across the nation and missionaries from across the world and in that the descriptions of the child. Now of course they all have to register and in that registration there are all kinds of questions about that particular child and one is, you know, are there allergies? Another question is are there special needs? And then if they answered yes to the special needs question, then it was asked of them to describe their child and it's very interesting because you have those who described, you know, high functioning, you have level one, level two autism, but doesn't look like it, there's so many different descriptors of their children. And why is that? Why does that exist? Simply because I think, as a parent, I can tell you that that label is a descriptor of my child and an indicator of maybe their needs, of maybe their abilities, and so we, as parents, want to kind of shift that terminology to better describe our child.
Speaker 1:When I do trainings, one of the things that I have done in the past is I pass out a piece of paper and I ask everyone in the room to write down a label, a word, one single word that describes them, and typically the room erupts because they're going one word. How am I going to use one word to describe me? I can't do that. I don't know how to make that work. Sometimes I'm this, sometimes I'm that, and also it depends on which environment that I'm in which. That is the exact response that I want, because when we serve individuals with disabilities in our churches, we want that label right.
Speaker 1:A lot of times we'll have churches say well, they never told us that he was autistic, they never told us that this was going on, they never told us that. And part of that is sometimes parents are just simply afraid that you'll turn them away and tell them that they can't, or that you'll already come in with a stereotype, a preconceived notion of what their child is like and then treat them according to that, and some of them is sometimes parents just don't know what to do or they're new in the path and the label becomes the difficulty in really assisting the child in doing what is needed. And so in this reel that I was watching on Facebook, temple Grandin said the biggest mistake that was ever made is them removing Asperger's syndrome from the DSM-5. And she said it's because Asperger's syndrome would have been considered a very different category than a full-blown autism diagnosis. And she said that she had visited a school and at that school was a child who was fully communicative and participating in all things and doing all things in a room full of students who did not have that same capability. And so they are misplacing students because the diagnosis isn't super specific and helping.
Speaker 1:Another thing that she said and this is probably the battle of all battles, I think that is going on right now is you have person-first language and you have identity-first language and you have person-first saying I'm a person before I'm any label. And is you have person first language and you have identity first language and you have person first saying I'm a person before I'm any label, and then you have identity first, which is I'm going to identify as my disability, and Temple said that the problem is that people are identifying themselves as autistic before they are identifying themselves as anything else. It's like a badge of honor to wear, and you're going to find that typically in a non-severe or you know. We're going to talk levels of autism here in a minute, or we're going to talk levels of autism here in a minute, Because there are so many things going on in the world today that talk the tism or the quirkiness that comes along with it, but in the same diagnosis, you're talking about people who are living their lives in fear for their children every day, for doing unsafe things, for not being able to communicate their needs, having health issues that they can't tell about. You know all kinds of different things. It's just not. It's not the same experience, it's not the same thing.
Speaker 1:But the tip where it talked about the identity, choosing to claim our identity in anything other than Christ the one thing that we want to live our whole lives with is a Christ follower. I may not be a teacher or a pastor or a missionary or all of these other titles my whole life, that I somewhat walk in my identity with right, like that's who I am, that's what I do. And claiming autism like excitement and this is the cool thing. And I'm not saying that's what everyone is doing. Some of the people who are claiming identity first as their way of verbiage and speaking of it is simply doing it and going listen, this is who I am, this is who God made me to be, I'm accepting of it and I'm going to walk in it and I'm not going to be afraid of it, I'm not going to hide it. I am who really God has created me and allowed me to be, and so I don't necessarily think either is bad. But we want to never claim our identity, disability or our brokenness or our claims of life over being a Christ follower, if that makes sense.
Speaker 1:So let's get back into the descriptions of autism. So now we have moved from just we've moved from the PDD-NOS, the Asperger's and then a full-blown autism diagnosis. We've moved into levels of autism. So I want to caution the next descriptions of what I'm going to give you. I don't tell you about the levels of autism so that you can further label people. Honestly, if a child comes into our church, or a teen or an adult, I am going to look at each individual for the needs that they have, not their diagnosis, because it is such again, it's a spectrum, right, it's not all the same. Every person's going to come in differently. So all of those pieces and parts that diagnosis isn't going to give me full direction on who they are. I'm going to learn who they are by getting to know them, and so don't rely on the understanding of each level as going oh yeah, that's just cut and dry and that's just easy and that's just who they are. So first, there are three levels, okay, and so the DSM-5 introduced three levels of severity Level one, which is considered requiring support, level two, which is requiring substantial support, and level three, requiring very substantial support.
Speaker 1:The full text of the DSM-5 severity levels for autism is provided with some considerations to social communication, restricted repetitive behaviors, repetitive behaviors those are going to be the biggest things in consideration. So in level one, you're going to have minimal restrictions in social communication, restricted repetitive behaviors and so you might see some deficits in social communication that cause noticeable impairments, difficulty initiating social interactions and clear examples of like those atypical or unsuccessful responses to social kind of interactions with others. They may appear to have decreased interest in social interactions. Maybe they have full ability to speak in full sentences, but whenever they are in that kind of interactive communication they might fail to have that same ability because the confidence and the awkwardness that comes in with that. When we consider restricted, repetitive behaviors within level one, there's an inflexibility of the behavior and it causes significant interference with functioning in one or more ways, whether it's switching between activities or problems of organization and planning. That kind of impact independence.
Speaker 1:So those are kind of your main things that you're going to see. And then it just increases in severity with level one, level two, level three. And that's tricky because you're like, okay, that's not a full, clear direction. Right, and that's exactly what we're saying is that you might see those explanations, you might see that background information, you might have that, but your best tool is going to be getting to know that individual and having interactions with them and building upon. And you want to always start by assuming competence, giving options and being just being able to just see and watch. And when you notice certain things building up or maybe anxieties coming in. Those are where we can start to offer support and see where it goes. Great conversations with parents and caregivers are going to kind of direct that. But understanding where things go and how they're going to work are going to be very different depending upon your church and the environment that is set up at your church. That is all going to impact that individual and how they may show those different levels.
Speaker 1:So what is the purpose of everything that I just said? Well, first of all, to understand the changes in autism, so that if parents and caregivers are coming in and their descriptions are across the board in all of those things, never be afraid to say okay, can you tell me what that looks like for your family member, for your individual, for your child, and then going from okay. So these are the definitions, this is where we came from, this is where we're at right now. Then, understanding the layers of identity and background in that great great things in person-first language, and there can also be benefits to identity. First, I'm not saying one is right over the other. I do have a preference on being a Christ follower over anything else, but I don't have to define that for an individual. Again, their experiences, their background, the place where they are in life is going to determine that, and that is not going to be a barrier for whether or not they can and will choose to follow Jesus. So that's not going to be a stoppage to any of that kind of stuff. Be a stoppage to any of that kind of stuff.
Speaker 1:Also, in noting that the information on autism what it's called and where it was and where it is now can help give us a fuller picture of autism descriptions and where it can fall. And it's great to just have that background knowledge so that when you're in conversations with people you know where they're coming from. And it might be, you know, if it's an older parent who's been around for a while has an adult child. Their verbiage might be different, so it's just really good to be aware of all of it and what it looks like and where it's at.
Speaker 1:So, other than that, this is just another tool in the tool belt, some information to be able to make the gospel accessible. Be sure that everyone has the opportunity to know, grow and serve, because God has a plan and he has a purpose and he has a purpose and that is for everyone. Do I know everything about disability ministry. Do I have all the answers? Have I done everything perfectly? I've absolutely not, but we are going to continue this conversation so that people of all abilities can have the opportunity to know Christ, grow in Him and serve Him with the gifts that he has given them. For deeper dives into these topics and more, check out indispensablepeoplecom and visit Amazon to purchase the books the Indispensable Kid and Gospel, accessibility and the Indispensable People.
