Interview between Speaker 1 (Meg) and Speaker 2 (Jen)
Hey, it’s Meg. Quick update on the music. If you listened to the last episode, you heard me say at the beginning that I got some feedback from an autistic listener that she loved the podcast, but found the music really aversive. And I asked for other autistic listeners to reach out and let me know what they thought about the music. I didn’t hear from a lot of people. I heard a couple say, “I actually like the music,” and a couple say, “I don’t really care about it one way or the other”. I’ll still take comments on this. So, if you like the music, don’t really care about it, or find it really noxious, and you’re on the spectrum, send me an e-mail – [email protected] For now, I’ve left the music like it is. But if you happen to be somebody who doesn’t like it, hit the skip forward 30 seconds button and it’ll take you right through the intro. Thanks for listening.
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 10 of the podcast with Jen Schonger. Jen is mom to two daughters, one of whom is a non-speaking (and very communicative!) AAC user. She is currently the Program Manager at the New Jersey Autism Center of Excellence. Since discovering her youngest was autistic 6 years ago, Jen has made it a priority to get up to date on novel research, and to learn from the perspectives of the disability community. Jen is very active in trying to shift the paradigm in autism from one based on a behavioral model to one that is aligned with the last 20 years of neuroscience and more importantly, the lived experiences of autistic individuals. She strongly believes that responsive adults who prioritize a child’s autonomy and emotional health are the key to supporting all children. Talking to Jen really made me reflect on my work with parents, and gave me so many concrete ideas about things I want to do differently in the future. The parent perspective is so important for us to listen to and consider, and I know you’ll learn so much from Jen.
Okay, here is the interview. Hi, Jen. Welcome to the podcast!
Jen: Hi, thank you so much for having me.
Meg: I am so glad to have you here. So, one of the ways that your advocacy plays out is in working with parents of kids who are newly diagnosed as autistic. And I’m really excited to explore all of your insights, but I want to start a little bit farther back in your story. Take us back to when your daughter was first diagnosed. What was that experience like for you and your family?
Jen: Okay, so she was diagnosed around 18 months, and I actually realized that she was on the spectrum around 11 or 11 and a half months. She was my second baby so I had the experience with my first daughter, and she just was always like a little bit different. We connected differently. Both of my babies were very high needs. And so, they both needed a lot of love and attention, and so I was always very overly attuned to what they needed and tried to be as responsive as I could. But I started realizing when looking at milestones that her milestones were different, and then realizing that even her sensory needs were kind of different.
When she was super little, if I was holding her and we would walk through sunlight, she would shudder as if it were hurting her. And going to a store or being in a car, she just couldn’t handle it. It was too much for her. So I just stopped driving to places that were far away because it was too stressful for her, and it was too stressful for me. So there was a time before her first birthday where I realized — and no one agreed with me, because she was a girl, we didn’t know any other autistic people.
And so we thought, as far as I know, we don’t have any other autistic family members at this point. We really had no experience with autism, or what autism was, or anything of the sort. I remember seeing the infamous “I Am Autism” video from Autism Speaks, which came out the year my first daughter was born. And then we had seen other specials — there was like a TLC special, and it was all focused on how terrible life was when you have an autistic child, and it was very stigmatizing. So those were the thoughts that were in my head. I felt really scared. Like, do I know how to parent her? You start questioning yourself.
And I should say that it wasn’t anything that a particular person said to me at that time, it was basically just things I have seen in the media. Then when you Google ‘autism’, it’s just really negative, dehumanizing stuff that’s there. I had told my pediatrician. He also didn’t think I needed to refer to Early Intervention yet, but I did. And so we had an EI evaluation — and just to give a shout out to one of your biggest fans, is for Cowen, who says you’re her Beyonce, by the way.
Meg: Oh my gosh. [Laughs]
Jen: [Laughs] She was one of the first people that came to our house, saw my daughter, and was so supportive. I wished that we could have had her as a therapist in our home but that wasn’t her role at the time. I did bring her to the children’s hospital to see if we could diagnose her at that point, and they don’t really diagnose people that young. She was about 13, 14 months, and so we had to wait.
I’m a very anxious person. I don’t like not having answers, and it was really hard for me to wait. I totally understand why they do wait, because they don’t know enough yet — and we’ll get into that diagnosis and things later, I’m sure — but it was really hard during that time. So I was a parent who I just wanted them to tell me to confirm because I knew, and I just needed them to say that, so that I could move on and just continue being her mom. But during that time it was just intense anxiety, probably some depression. My husband was very worried about me. He jokes now that I did the biggest 180 he’s ever seen.
And it was all because it’s such a vulnerable time. Because when you don’t know anything about Autism, you suddenly feel like you don’t know how to be your child’s parent. And it’s scary.
Meg: Yeah. So it sounds like you were in that vulnerable early time, sort of basking and bonding with your daughter, when you started to notice things were different. And you were doing everything you could as a mom to accommodate her and make her feel comfortable, but then the word ‘autism’ came in and the only context you had for that was negative and scary. And it sounds like it really robbed you of some of your joy and connection with your young kids at that time, because you got pulled into this idea that something bad was happening.
Jen: Yeah, that’s a perfect way of putting it, because you’re just kind of like going about your life, raising your child, and then suddenly, because something is different, it’s like — well, the narrative is that now you have to intervene. The whole concept of this time in life, I really have a problem with how it’s presented to parents. Because think about all the words that are used — ‘Early Intervention’, ‘red flags’, ‘epidemic’, ‘delays’. Even the word ‘behavior’ has been co-opted to mean something negative.
With my first daughter, I didn’t experience any of that. So it was so much more stark to me the difference that it’s like immediately when you suspect that your child is autistic, the messages automatically become about managing behavior, and fixing, and remediating skills, and all thoughts of emotional regulation and attachment. And what children need to be healthy, loved, secure — it’s totally thrown out the window. For some reason, that’s just the way it is at this point. And this was only six years ago so I do think things have gotten a little bit better since then.
But from what I am still seeing overwhelmingly, there’s not really an embracing of neurodiversity at these early stages. I find that really problematic, and that’s why I am as vocal as I am about trying to change it.
Meg: Yeah, it takes such a long time to change a culture and change a paradigm. And, unfortunately, it does seem like that’s happening really slowly. And, you know, listening to your story, it’s apparent now from our vantage point that it was such a missed opportunity for providers to talk about things like acceptance and connection and strengths, instead of what is so rooted in the medical model of autism. All of these negative medical terms that you talked about, you heard. Tell us a little bit about the process of getting the diagnosis.
Jen: So, basically, your child has to be put through an evaluation. I honestly must have blocked a lot of it out. At that point, it was more black and white. I was basically saying, “I know she’s on the spectrum, like, let’s just, you know, get this done.” Um, but what I want to be really clear to parents about this is that this whole process is still extremely subjective. And so when you get this diagnosis, no one has looked inside your child’s nervous system and seen what differences they have, and no one can predict the future. No person should ever tell you at three years old or two years old, or even 10, what your child is going to be capable of for their whole life. So I really hope that people realize that. It’s totally inappropriate if anyone ever tells you what your child is going to do at that age. I don’t care if you have a disability or, you know, typical, whatever the case may be. We didn’t have that experience but a lot of people do.
Anyway, you go through this process, you get the diagnosis, and then — I don’t know about other states, but in New Jersey, there’s even a registry. So you get a call from the state about the fact that your child has a diagnosis. And I remember being afraid at the time thinking, “If we don’t do exactly what is being prescribed right now, are we going to get in trouble?” Like, I didn’t know if I would be reported to Child Services or something. And that wasn’t because anyone framed it that way. Maybe it was partly the lack of fully explaining, and the fact that you’re still in a space where this whole process is really hard. I felt like I was serving my daughter to people to say, “Here, pick her apart”. And it still makes me want to cry. I hated it.
Because she just was who she was. And it really feels terrible when you have to do this. And the fact that it’s diagnosed behaviorally gives parents the wrong impression that this is a behavioral disorder. It is not a behavioral disorder. And the goal should not be to make your child appear typical. The way the diagnosis happens, I think, immediately causes a lot of confusion. People really need to know that we have procedures for things and there’s processes that should be followed. But it’s like, we should be constantly re-evaluating these things and people should know how it feels on both ends. If it felt this way for me, how did it feel that way for her? She was still a little kid in that room, hearing things. And so, I always just try to keep that in mind. I have my experience, but she has hers, and hers matters even more than mine does.
Meg: It sounds like that process was lacking a lot of things for you. It was lacking choice. You didn’t understand, or see, or you weren’t even presented with your choices for what to do next. And it didn’t align with what felt right to you as a parent and what felt right for your daughter. That really goes parallel to a lot of the shifts that therapists are making in our work away from behavioral towards a more neurodiversity perspective. You kind of say this — “It never felt right anyway.” The kids didn’t like it, I didn’t like it, but imagining the experience of a parent is so much deeper and so much more profound, because no one is more hurt by their child going through something difficult than their parents.
Jen: The other thing, too, is that we didn’t have any background in this. So, like clinicians, you all went to school and had training in the brain, and child development, and language, and different clinicians will have different specifics. But my background was business management and human resources. Honestly, what helped us the most, was that my husband had a background in neuroscience. I was coming from a place of fear initially. Like, what if we’re going to ruin her life if we don’t do this? Because you’re suddenly kind of sold a bill of goods that “You have to intervene with by this window, or you’re going to miss it,” and “You need a team of people.” I didn’t need a team of people for my other daughter. And so you feel really inept and you question yourself constantly, so the fact that he had that background literally saved us because he was like, “This is our neurology. You don’t just change that from, you know, by doing like drills.”
And so, I love him so much because when I was the anxious ball of nerves, he was the rational, thoughtful, amazing, grounding person that I needed to be like, “Okay, let’s just take a breath.” The big thing here that I would like for parents to consider is — don’t let people rush you into decisions before you know what your child needs, because you need time to think about what is being suggested, and why. And about what your child actually needs. And you do not know enough in those early times when you’re first learning these things about your child to be making decisions that are going to impact them for the rest of their lives. This whole framing of — and I do think it’s a form of fear mongering in some ways. Of saying, you know, “You have to intervene immediately and immediately start all these therapies”.
We really need to help people feel strong and say, “I need a little bit.” I don’t care if it’s a few months, if it’s shorter or longer, but there needs to be some time of being able to consider these decisions. Because as her mother, every decision that I make for her is going to impact her for the rest of her life. And I need to know what the pros and cons are of each thing.
She was about 20 months old; I had someone telling me basically to not make eye contact with her when she was crying — [Pause; choked sound]
Meg: Planned ignoring is one of my least favorite strategies. I can’t even imagine how that felt for you as a mom with your baby crying.
Jen: It’s still — like, if I think about it, it still bothers me so much, and I regret it so much. I never did again but, again, it’s like you’re vulnerable in that time, and you have, you know, so-called experts suggesting that you do things. And it’s really hard to say, “No.” It’s like you’re the salmon swimming upstream. What I’m saying is that if things don’t feel right, then you are allowed to push the brakes and say, “I’m not going to do this right now,” and then re-evaluate things. Because even in terms of people will say, “Well, we want our child to be independent.”
Well, is that really what you need, or do you want them to be autonomous? Because there’s a big difference between the two. And when your child has a disability, you do have to come to terms with the fact that they may always need some level of help. But there’s nothing wrong with that. Our society is ableist, and so we have to work through a lot of our own ableism at this time as well, and that even takes time sometimes. People are going to come at it from different cultures and different experiences, and we’re all kind of on our own timeline of understanding all of this.
So, I want parents to know that you still know your child best, and if something doesn’t feel right, then I don’t care who’s telling you to do it, you need to pump the brakes and just think it through first before you decide anything.
Meg: Through listening to you, I’m pulling out some of the blind spots that your therapists had, and that many therapists still often have. And the truth is, many OTs and other therapists, even those of us who have children, will never be in a place like you were — as a parent of a child with a new diagnosis, so many professionals, so many new services in their life. And a couple of things that you’ve said is, you felt rushed to decisions, and you needed to be given more time and space, and more or different information, I imagine. And also that you weren’t really asked or consulted in the strategies being used; about if they felt right to you and if they fit into your life. What are some of the other blind spots that you saw in your therapists that those of us who are going into families homes, or working with families in any way, should really be thinking about?
Jen: So, I should say that I did have some outstanding therapists, and most of them were OTs. Especially in those early times, the OTs were the ones teaching me about sensory integration, and I felt like that is what started me on this whole endeavor of learning and trying to understand her experience as best as I can. But one of the things I always — I guess I didn’t have a word for it at the time because I, again, this has taken me a few years to start really understanding the full picture. I don’t know that anyone was really attuned to anyone in the autistic community. There wasn’t one person who I had ever heard talk to me about that, or knew the perspectives of the autistic community.
And this whole view of Disability Justice was kind of just nonexistent in those early years. I just listened to your podcast with Ido Kedar. His was the first book that I read when she was about 16 months old. And it completely changed our lives.
Jen: When I listened to his podcast yesterday, I just cried. I mean, I’m a crier, obviously. But I cried. And this I should say, too. It is really hard to put yourself in the position of your child and try to understand their experience. I don’t know exactly what it’s like for her, but just thinking about the things that she encounters and experiences, and the bias that she has to contend with. I mean, it’s hard. But hearing from Ido at that time, he had the same motor differences going on. And it was a lightbulb moment for me at that time because between going to OT and then reading his book, I was like, “Oh my God, this is her,” you know?
And it was so validating to hear it directly from another autistic person. Like I said, it made me just rethink everything I thought I knew. And it was like, “Yes, this is it.” All the stuff that I’ve been presented. That this is, you know, behavioral — even though the whole concept of, “Oh, well, she’s just not picking up on so called social skills the same way, or speech, or whatever.” — it’s like, it wasn’t because she just wasn’t interested.
I mean, it’s totally ridiculous, when you think about it, really. And his book really explained the “Why” for a lot of it. So then I started on this whole path of investigating, basically. My therapists were very supportive with that and really helped me fill in a lot of those gaps. This whole concept of Disability Studies is new to me within the last three years, I would say, really, and it’s really because I kind of sought it out. Had I not started reading from Ido, I may not have been connecting with other autistic adults online. I don’t know if I would know what I do now if it weren’t for running into his book at that time. So, I would love if more therapists were seeking out the voices of the autistic community, which is why what you’re doing is so great.
Meg: I love that. So, seeking out the voices of autistic people and connecting families to those voices, as well as sort of slowing things down and doing a lot more listening and collaborating. What else could OTs do at the start of their relationship with a new family, to really set the stage for empowering the parent and the child, and fostering the development of positive self-identity for the child?
Jen: Definitely focusing on the strengths. And I think one of the other things is because of the evaluative the nature of everything — like I said, that just feels really bad. It always gives an impression — even if it’s not intended, just because of like the way that the tools are set up — it always gives the impression that it’s like, “Well, we just have to catch up her up with neurotypical milestones. That’s what success is.” And I think having that reframed as, “Your child is going to have different milestones than a typical child, and that’s great. They’re still going to have their own milestones and it might look different, and it might happen on a different timeline.”
We really need reframing of a lot of the messaging that exists, because if we don’t have those people in our ear, it’s really hard to get past that. It’s a lot harder to have to go back and realize that you thought one thing for many years, and then realized it wasn’t maybe the best path than if you can just early on know like, “Okay, she’s not typical, and that’s okay. She’s just as amazing as if she were typical.” So, I would love for therapists to really just support us through the ableism that exists even within all of the tools that we have that were designed for this purpose.
Meg: So we have an episode coming up about how to actually write an evaluation and write goals from a strengths-based perspective. And I think what you’ve just said adds a really important layer to that of how are we actually presenting the evaluation process itself, as well as the goals to the family. Not just how are we writing it and what are we writing, but how are we explaining that we’re giving out these materials, and doing this assessment, and writing these goals, and noting where she is and where she’s going to be, and maybe or maybe not noting how that compares to whatever the norms are; that we need to have the parents experience of that process in mind as we do the evaluation and present the goals.
Jen: The way that the information is presented to us is literally what makes or breaks our stress response. For instance, my daughter doesn’t speak. It’s not that she doesn’t want to, it’s that she can’t. So, if we had a therapist constantly saying, “All right, let’s work on speech goals. Let’s try to get her to constantly make these speech sounds.” That is not going to be something that is helpful for her. It’s not going to make her feel good about herself if that’s the ultimate goal. It’s not going to help her communicate. She needed people who believed that she does and can communicate. And how do we decrease barriers so that other people can understand her, and she can be understood? So that’s why at an early age we started with picture cards when she was maybe 11 or 12 months, and I would just print out foods that she liked, and she’d asked me for her shoes that she liked, but that’s limited. A lot of people will stick with that. But that’s not true communication.
True communication is being able to say what you want to say whenever you want to say it to whoever you want to say it. So we started with AAC when she was 20 months old, and I was advised against it by a few providers, because they said she’s not old enough, or she didn’t perform well enough in an eval so she’s not ready, like you should just give her four buttons. I needed those champions behind us to say, “No, she can do this and so can you.” I had them. So, even though there were some naysayers, I had those people in my corner saying, “We’re here to help.” They didn’t know much about AAC at the time either but they were on board. Because of those people that empowered me, she had a talker at 20 months old, which is unheard of.
Even at this point, a lot of kids don’t have access to that, and there’s so many barriers, many of which are attitudinal. It’s all about the framing. She can communicate. Can she do it in a way that a majority do? No, but her communication is valid. And even non-verbal communication is valid and important. If we as parents and therapists don’t acknowledge that and empower the child that way, that is going to lead to frustration, feeling terrible about themselves, feeling like no one cares. If you think people believe in you, you’re going to keep trying.
Meg: And when you say non-verbal communication, did that look like her kind of leading you by the hand to what she wanted?
Jen: Yes. So, you know, she still can’t really, say, point to something thats far away. She can use her fingers for an iPad. But she would lead me by the hand; she would bring me to the fridge to open the fridge. Even now, she needs support in certain ways. So if she needs to pull up her covers just like Ido in his book, she needs some help sometimes. She’d take my hand and use my hand to help her make that movement. And if I were to say, “No you can’t use my hands,” because that is what some people are told — like you shouldn’t let them use you, they call it ‘using the parent as a tool’, I think. That is so dehumanizing. I can’t do that. I have no tolerance for that. It’s totally unacceptable to say you shouldn’t acknowledge a child’s communication.
So just to go a little further into this, she and of course many autistic people communicate in many different ways, just like all people do, and we all use non-verbal communication. For some reason it seems like we’re sort of conditioned and told by certain practitioners or therapists that we should redirect that communication so that it seems more typical, which really is not okay whatsoever. It’s ableist and we need to stop doing that. But what is great is that if you tune into your child, you really start to learn their communication, and you can have such a connection between the two of you. It’s very special. I’ve learned to read her cues through her gaze, her body language, her expressions, her vocalizations, her gestures.
So for instance if she’s reaching for something in the fridge and I say, “You want some milk?” If I’m correct, then she’ll walk away a little bit as if to tell me you got it right. And she’ll stay nearby, but she can go back to doing what she was doing while I get her milk. If I’m wrong, then she’ll stay and she’ll keep trying. Other times, she’ll use her talker and she’ll just say, you know, “Want milk.” And still other times, she’ll climb a bit into the fridge to reach it herself. So, just like if I wanted to communicate something, I may use a different means each time as well. And that doesn’t mean that one of those ways is less valid than another.
We’ve experienced a lot of neurotypical people who don’t know her, who assume that because she communicates differently or because she doesn’t have speech that either she doesn’t understand, or she doesn’t care, or that she’s ignoring them. That couldn’t be further from the truth and it’s really damaging. It hurts to think about the bias that she has to encounter every single day because of people’s preconceived notions of intelligence and understanding. And even if she may have cognitive disabilities, she’s entitled to the same respect to that everyone else is, and to be presumed competent so that she gets opportunities and access to everything that everyone else does.
Another example of just like some of the miscommunication that happens is we were leaving a dentist’s office at one point and the person said goodbye to her. She gave them a quick little glance in her sweet way, and the person missed it. And the person says to me in front of her, “Oh, she doesn’t care.” She was well meaning and joking but obviously that was not appropriate or okay. In addition, the person was wrong. She had acknowledged them, but it was in the way that she acknowledges people, especially people she doesn’t know. So just think about that. Right there, that was one person missing her communication, but assuming that she wasn’t communicating. That is very dangerous. People do say things in front of her, and other people with communication disabilities, and they’re almost always wrong.
Luckily, she’s resilient, and strong, and amazing, and she’s one of the sweetest, coolest kids I could ever hope to meet. But it’s wrong that people have to — and little kids — have to deal with this bias. I mean, that can cause long term trauma, because you’re just constantly being misunderstood, and that’s really hard. So as parents, let’s think about that. And let’s insist that not only will we make sure that we don’t do that, but that we will require that of any adult who is helping, supporting, teaching our child. Because that’s what they deserve. That’s how we’re going to nurture their communication style. And they will keep trying. The more you support the person to communicate in the ways that help them advocate for themselves — and that includes saying, “No”, by the way. People who don’t have speech or who can’t shake their head yes or no because of motor challenges, they have other ways of saying no, but they rely on people to acknowledge and respect those ways.
And then, we can still model on an AAC. You can model ‘No’, and you can shake your head ‘No’, and you can do all of the things so that we can still teach multiple ways of showing that they’re saying ‘No’ to something. But we still need to make sure that we’re respecting that. So I just ask that we make that a priority for all of our kids. Especially to parents and therapists, please make sure that you are teaching your child that their communication matters. We need to understand that this is a whole body experience. And so, for someone like her, she is going to need more motor support, it doesn’t mean that she can’t think, it doesn’t mean that you know she doesn’t have her own perspectives. It doesn’t mean that she doesn’t want to do things.
Another example would be, hand-over-hand was something, especially for someone with compromised motor planning, that people would always push with her. And so I started reading about that a few years ago and I was like, this is not okay. She’s a female with developmental disability. She’s eight times more likely to be vulnerable to abuse. Again, it’s like, who’s telling the parents this? Because I never heard anybody say a word to me about that, I found that in my anxious researching. Especially for motor compromised kids, they need support but there has to be consent. And we should be teaching those consent practices early, which I know you’ve spoken about before. So that, I guess, was another knowledge gap of having a child with motor planning challenges. We shouldn’t be jumping to hand-over-hand. We need to assist in other ways that are not as invasive and always get consent first.
Meg: I agree. That’s so important. That’s so important, and I can imagine as a parent how hard it would be to say, “Get your hands off my child she didn’t give permission to do that.”
Jen: Yeah. You’re always questioning yourself because, again, you’re not the expert. I took a course this past year at Montclair State on neurobiological perspectives and autism, just so that I have more official education. Because I feel like I will be taken a little more seriously now, which is unfortunate, but that’s the way my experience has been.
Meg: It is, and if we think about the barriers for families who aren’t native English speakers, don’t have the same level of education as their therapists, who have people of color with white therapists; all of the deeply ingrained power dynamics, how much harder it is to say, “Please don’t do that, this doesn’t feel right.”
Jen: Yes. And I have tried to, I guess, utilize the privilege — I know that I have privilege. I was a stay at home mom for eight years, and my husband, you know, we’re married, in a stable home, we’re middle class, we have privilege that allowed for me to be able to do all of this homework so that I could advocate the way that I do for her. So that’s why I tried really hard to put as much information out there as I can, and to try to support as many parents as I can. Because who has the time to do years of research on their own? Most people can’t do that. That’s why I think it’s even more important for the therapists that we work with to really know this stuff because we might not get it elsewhere.
Meg: Yeah. Okay, I want to flip the scenario a little bit because we’ve been talking about the all too common experience of a parent who might want something different or might not feel right, even if they aren’t yet sure why with the interventions that are being presented to them, or being done to their child. So what advice would you give to OTs and other therapists who find themselves in the position of coming in with this pro-neurodiversity perspective, but the parents are in a different place. They really want more behavioral intervention, they’ve been taught to do planned ignoring, they are using really frequent and intensive hand-over-hand. What advice would you give to therapists who are coming into that dynamic between a parent and a child, or between the parent and the therapist?
Jen: Obviously that’s so hard. We can feel easily judged, especially when people are coming into our home. My housekeeping skills aren’t great, I’m dressed in sweatpants, and there’s already those factors going on. Especially if you’re going into the home where the parents are like, “Okay, I hope this person isn’t going to judge me.” But what I would say is this the best way that I would suggest is that we try to connect them with the autistic community. And I know, even some parents will have resistance to that, when they’ll say, “Oh, well they’re not like my child. You know, my child can’t speak, or my child can’t do anything independently.” There will be a number of reasons that people will try to equate a grown adult with their child. But autistic adults used to be children, and no adult is the same as they were three.
And the other piece of that would just be, we don’t have the same experience just like anyone else. If I adopted a child from China, then I think it would be incumbent on me to learn about Chinese culture. So in the gentlest of ways if we could just talk about it from a cultural perspective. So, the first key for me would be to gently encourage them to listen to the autistic community, whether or not they think their child is exactly like the people who are speaking on behalf of them sometimes. And I’ll say too that there are many non-speaking people in many social media groups who are out there. Like, I read Ido’s book. He’s a non-speaking AAC user. They’re out there. You just have to connect them with people that might be like their child.
And then, again, I feel like there’s a lot of cultural differences, obviously, and so, as a society, maybe it’s just general education about what kids need to feel secure. There’s research about what kids are most likely to have secure attachments, and those are the kids whose parents are most attuned to their needs. Which means we’re trying to understand their perspective and how they’re experiencing it. It’s not just about how we’re experiencing their so-called behavior or differences; it’s how is the child experiencing those differences. And what are our long-term goals for that child? Usually people will say they want them to be happy and have love, and they’ll say independent, and that is something that our society is a little bit obsessed with and we need to be realistic about the fact that we’re all more interdependent than we are independent. But I think talking about those concepts and of long-term what do you see for your child. And then, how does that match up to what you’re doing right now. Many times that might not match up, and that might still be something that’s difficult for parents to grasp.
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Jen: The other suggestion I really have is, what is evidence-based? What does that mean? When they say it’s evidence-based — in what? What are they measuring, exactly? Who was studied in these things? For instance, I didn’t know that ABA was never studied with non-speaking people, or females, or it was only studied with basically white boys. My daughter is a female. She’s non-speaking. And so right there are two things about her that were never studied. So, when you tell me that something is evidence-based, I need to know what that means.
We need to help people understand the terminology that’s being used. There’s more than meets the eye in these catchy things. Saying something is scientific doesn’t make it scientific, you actually have to have data that is valid, and methods that are valid, and studies that include all of the things that a scientific study should include.
Meg: There are so many important insights in what you just said. So, we can connect parents to the voices of autistic adults and let them speak for themselves and inspire families about the possibilities and what’s important. Oh, the second thing that you said that was so insightful was about framing autism as a culture, and rather than coming from the perspective of, “Oh, I’m an expert and I’m trying to show you what you’re doing wrong,” say, “Let me tell you a little bit and show you a little bit about what I know about the culture of autism, and how we can learn about autism, and strengths, and what’s meaningful and work from there.” The third thing you said was connecting what we’re doing to the families, big in their gut, long term goals for their kids, and making sure that the strategies we’re using now are aligned with those.
And I love that idea because that’s really going to address that disconnect, of “What I’m doing doesn’t feel right, what I’m doing doesn’t feel good,” and I think it’s okay and good to teach families and to teach ourselves that we can and should be listening to that voice because it’s usually right. And using, in that regard, the attachment lens and the research on how we can build strong and healthy attachment, so that kids can grow into healthy and attached adults. And then, finally, adding some nuance to research and evidence-based for families who say, “I’m going to do this behavioral approach because it is the gold standard of research,” to say, “Well, hey, let me add some nuance to that. Let’s talk about what research means, whose voices are included there, and what are they actually measuring versus what do we want and who is your child.” That’s really helpful because this is a really hard question.
Jen: Okay. I was just thinking that it’s because we are in that vulnerable space, the more empowered we can be with real information. It’s like, that’s the best you can do. You can’t force someone to change their mind, and many people’s might not still, and that’s hard. Especially when you know about the last 20 years of brain science, and you know about the disability rights movement, and you see these little human beings in front of you who rely on all of us to get this right, because the stakes are so high. I mean, it’s really hard when people are still kind of resistant to all of this information in favor of a more ‘fix it’ sort of mindset. Maybe some people aren’t ready to hear it yet, but you’re still planting seeds that they will have, if and when they are ready.
Meg: Okay, I have one final question for you. If there’s one thing you would like to see OT start doing or do differently in their work, what would that one thing be?
Jen: I would say I would really like for OTs to start leading in what you all do best, which is quality of life. Especially with regard to school OTs, I would really, really like to see them prioritize sensory more, and the learning styles of autistic students. Because I feel like even, there’s a difference in outpatient versus school, where school is focused on doing things the way that all the other kids do it, and it’s one big expectation of the same thing — so we’re just going to work on these skills so that you could do it exactly like everybody else does.
And there will be sensory breaks and things in schools, but there’s not really a focus on universal design of spaces and why sensory is important for learning, and how that’s going to affect the child and their ability to access the information. Please stand up for our kids and tell other educators that, “No, you shouldn’t be making this kid sit still for this long, they need to move so that they can learn. And here’s what you can provide for them to help them to focus in the way that works for them.” So, really, I just would love — you know, you guys have the background of the brain and body, and we need more people to really be rallying around us for that sort of mindset. That in order to properly support autistic people, you have to know something about the brain, and you have to know something about how autism affects everything about a person.
The way she thinks is part of who she is and that’s part of her being autistic and it’s what makes her so amazing. And she needs people to see her, and love her, and support her for who she is and not try to make her into something that she’s not. And we need more people to start speaking out about the microtraumas that these kids experience every single day due to ableism, or misunderstanding, or whatever the case may be. So that’s what I would love.
Meg: Thank you so much for your conversation today, for all of your insight, and for your advocacy. It was such a pleasure speaking with you.
Jen: Thank you so much.
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.