"I Don't Know What They Need" • Supporting Kids with Autism Through Big Feelings - Weekend Wisdom

Question: What advice do you have for fostering/adopting children with autism, particularly those with limited communication skills? How can we best support them in expressing big feelings and feeling safe to do so? What can we do to help them feel they have some control and feel heard when they can't always communicate what they want and have a harder time understanding what's going on?

Resources:

• Setting Up Your Child with Autism for Success
• Helping Autistic Kids Shine
• What Is Pathological Demand Avoidance and How Do I Parent This Child?
• Helping Your Child with Autism Thrive
• Parent Support Toolkit (Autism Foundation)

Transcript

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Tracy Whitney 0:01

Welcome to Weekend Wisdom. My name is Tracy Whitney. I am the content director for creating a family. I'm also your host for today's episode of Weekend Wisdom. This is a question that we received from Washington State, a foster parent who is working with a child who has autism and limited communication skills. So let's dive right into the question. What advice do you have for fostering or adopting children with autism, particularly those who have limited communication skills? How can we best support them in expressing their big feelings and then feeling safe to do so with us? What can we do to help them feel that they have some control and feel heard when they aren't always able to communicate what they want and have a harder time understanding what's going on around them? Thank you very much, foster parent from Washington State. Well, I love how much compassion I hear in your question. And I appreciate that you want to deeply understand the children that you're caring for. I appreciate that you aren't focused on just managing their behavior. And those are the things that really matter as we dive into this conversation because kids can feel the difference between adults who try to control them or just kind of manage them and those who are trying to deeply understand and connect with them. So that's a great starting point. Honestly, many children in foster care or adoption who have autism are also carrying many other layers. They may already have experienced the world differently based on the trauma that they've experienced. But then you also are facing a child who is navigating the world neurologically different than their peers. So trauma, grief, loss, transitions, sensory overwhelm, communication struggles, uncertainty, all of that for kids with autism in the foster system can create in them a nervous system that is hyper-vigilant and overwhelmed and just kind of working super hard all day long. So one of the first most helpful mind shift, mindset shifts that you can make is instead of asking, how do I get this child to communicate differently or better or with me or whatever, we can start by asking, what is this child trying to tell me with the tools they currently have? And that's meeting them right where they're at. And that's one of the most important things about helping a child feel seen is meeting them right where they're at. So because we know that behavior is communication, and kids who have limited verbal skills or verbal language, we often will see that behavior showing up as melting down or shutting down or aggression, running away, also called eloping, refusing or ignoring repeated questions. We might see them acting in very controlling or manipulative ways or withdrawing. And that's all our perception. But what the child might actually be trying to say and doesn't yet have the skills to do so is I'm overwhelmed. I'm scared. I don't understand what's going on around me. I need predictability. I don't feel safe. I don't have the words to tell you what's going on with me. And honestly, a lot of kids with autism have spent years trying to be understood in some way. The misunderstanding that they live with is overwhelming and exhausting and painful for them. And many adults who don't understand their experience may have been expecting compliance instead of communication. And creating emotional safety for this child is your paramount goal at this point. One of the best things that you can do to create that sense of safety is to reduce the pressure and increase the predictability. It helps them know what's coming next. It helps them see what they can expect and what's expected of them. Visual schedules for kids with limited language skills can be very, very helpful in your situation. You can break things down for them into pictures, first breakfast, then shoes, then school. Limited number of words, short, simple sentences, and a little picture to go with each one of them. Showing them the picture of the day's routine every morning before they start their day can help them know what to expect and know what points of the day they're going to be expected to do certain things. And scaffolding them in that way can really help. Many children with autism process visual information more easily than spoken language, especially when they're stressed. It's important to remember that their thinking brain kind of goes offline in moments of high stress or high hypervigilance or moments of overwhelm and dysregulation. It's also important to remember that transitions can be really hard for kids with autism. So giving them warnings ahead of time can reduce the panic that they might feel in those moments of transition. So again, fewer words, shorter sentences, very clear instructions. Five more minutes, then bath. When this show is over, the TV goes off. Short to simple sentences that can just reduce the sense of overwhelm that they feel in trying to communicate or be communicated to. And whenever possible, you mentioned giving them some sense of control, offer them small choices. They need to be choices that you can live with and that you can accommodate, but they need to have some sense of choice and voice. Any kid who's experienced trauma really will thrive when they're given choice and voice. But kids who have limited verbal skills need this even more. And again, it needs to be short, simple sentences. So the choices don't have to be big, life-changing choices. It's just something you build into your everyday routine that supports them. Blue cup or green cup, peanut butter and jelly or mac and cheese. Walk or hop to the car. Quiet or music? Words, pictures, or pointing. Those are the things that you can build into the little rhythms of your day that will give them that sense of voice and choice and help them feel seen and heard and understood. It tells them that their voice, however their voice comes out, matters to you. Another really important piece of this conversation is understanding that communication is so much bigger than just spoken language. I think sometimes we parents who can be eloquent and speak well to ourselves, to other adults, to our kids, forget that verbal communication is only a small part of the overall communication patterns that go on in our homes. So some of our kids may communicate through their movements or through their behaviors or through drawing pictures or pointing, scripting from shows, repeating phrases, using their AAC devices, pictures that you've kind of laminated and put on flashcards and gestures. These are all things that can change when this child is dysregulated. And so you should kind of know what is their go-to communication method, and then understand that their ability to process their typical expressions of communication will drop and decrease during dysregulation. So that means that long explanations and justifications and detailed information during a meltdown will not connect. In fact, they will likely increase the child's overwhelm. During those moments, your calm, regulated presence matters more than any words you could say. So you again focus on those short phrases. And my suggestion is that you keep kind of a battery of scripts on hand in your mind that you use that will create that predictability and that familiarity for this child. So you're safe. I'm here. I can help you. That was really hard. You don't have to do this alone. Those kinds of short phrases can really help de-escalate moments where the child is just feeling overwhelmed and stressed, and it impacts their ability to communicate with you. Listeners, do you also have a question about this week's information about your child's neurodivergence and how to parent them well? We would love to hear from you about this or any other issue related to adoption, foster care, or kinship care. Drop us some fan mail in the button on your podcast player or the show notes, or email us a question at info at creating afamily.org. Any of those methods will get the question to us and then we'll add you to the list of questions that we do some research on and comb through our archives for, and we'll share it on weekend wisdom. So you might get to hear your question on weekend wisdom coming up. Thanks for listening and thank you for dropping us a question. Sometimes we think that we need to fix those big feelings quickly, but quite often what helps the most is helping that child feel emotionally held, even if they don't let them, don't let us physically hold them, helping this child feel emotionally held while they're working through those big feelings. It's that empathy, it's that presence, it's that consistency and that calm. I also want to mention uh sensory needs because sensory overload is huge for any child who's experienced trauma, but it's also quite a significant issue to consider when you're talking about children with autism. It often gets mistaken for bad behavior. Sensory overload could look like a child melting down over lights that are too bright, or clothing that feels too tight or constricting, tags that feel itchy, too much noise, their body might feel out of control, they might have uncontrolled movements that are stressing them out, transitions that happen too fast between activities. Um, it could also be that there was just too many demands stacked together on them, and their brain and body is kind of short circuiting and they can't handle it. If this child also has a history of trauma, and I'm assuming that they do because they're part of the foster system, their nervous system is probably already on high alert kind of all the time. So instead of focusing on their behavior, it can help if you become kind of that child's detective. Ask yourself, what happened before this meltdown? What happened before this outburst? And what emotional or sensory challenges are kind of building inside of them before they kind of blew their top, or in the trauma community, we call it flipping their lid. Some families have found it very helpful to create calming spaces rather than punishment spaces. So not a timeout, but a cozy corner with maybe a weighted blanket or a weighted toy that they can sit on their lap, sensory tools like fidget toys or those little suction cup things that they can poke, um, water bottles that have the glitter and the glue in them. They're called calming jars, um, headphones that block out extra noise, dim lighting, soft, fuzzy blankets, um, again, fidget toys, movement breaks, kind of, hey, let's take five seconds and you know, dance or hop or things like that. Any safe space that a child can retreat to communicates to them that they are not being rejected for this behavior. They're not being dismissed for having these big feelings, they're being given a space and safety to calm back down. It's really important that foster and adoptive parents who are raising kids with autism be cautious about assuming defiance. It's really easy to look at those big behaviors and just assume that they're being disrespectful or they're being defiant or they're just trying not to comply because you asked them to comply. That is not usually what's going on. What looks to us like refusal could actually be anxiety or paralysis or overwhelm, emotional paralysis, confusion, communication differences that they just can't get it out in whatever is their typical way of doing so. And some experts call it demand avoidance. We actually did a really helpful podcast recently on pathological demand avoidance or PDA, which is a common profile within the autism spectrum disorder community. It can show up in kids with autism as you know, just an outright rejection of any request that we make of them or them feeling smothered and controlled and manipulated. And for many kids who also have that trauma history layered in, control feels deeply connected to safety. And so if they don't feel control, they don't feel safe. Collaboration in those situations work better than uh power struggles. Instead of saying, because I said so, and who hasn't said that? Oh, it's hard to not say it, but because instead of saying because I said so, try to make it sound like something about this feels really hard right now. Let's figure it out together. Or how can I help your body feel safe while we're doing this? Or how can I help your body feel safer so that we can do this? It shifts the relationship away from me versus you and helps the child understand we're on the same team. I am team Johnny, and I'm gonna do whatever I can to help you feel safe and scaffolded. It doesn't mean no boundaries, it doesn't mean permissiveness, it means structure that allows them to thrive in the way that they thrive best. I also want to say that you don't have to become an autism expert overnight and you shouldn't feel that pressure to do so. You can stay regulated and curious and calm and connected all at the same time while you're helping this child learn what works and while you're learning what works. And please, please remember this child does not need perfection from you. If their communication skills are failing to get across what they really need in the moment of big feelings, and your communication style is failing in the moment, you're not a failure. You just tried something and it didn't work. So let's try something else. Your kid needs an adult who will be willing to learn and grow and experiment with them to find what works and to meet them where they're at in the meantime. Autism can be incredibly individual in its manifestations. So what calms one child may totally overwhelm another. And what helps one child communicate well, like an AAC device or flashcards, may not work for a child who is highly verbal, but doesn't maybe have the emotional skills that match that verbal skill. So progress won't always look like you expect it right now, or like other people around you may expect it. It may look like small things like a quicker recovery from a meltdown. It may look like a better tolerance for transitions. It may look like pointing instead of screaming. It may look like asking for help in the form of a question. It may look like trusting you more this week than they did last week with their big feelings. And it may look like them starting to believe that their needs and their voice matters. That's where the real growth is going to be happening. And again, sometimes those show up in really small ways. I would love to encourage you to seek support for yourself with other parents who are raising kids with autism. Seek continued education to help kind of gird yourself up for what you are learning and experiencing, and try to go after places where you can learn about the intersection of autism and trauma. Traditional parenting advice can sometimes unintentionally, I want to say that clearly, increase shame and dysregulation for kids with autism. And so you want to find a community and a learning source that will help you do differently. I will link several resources in our show notes to help you start the learning process and to help you dig a little deeper. But please, bottom line, remember your child does not have to communicate with you in typical ways to deserve the dignity, choice, and understanding that brings emotional safety. Sometimes the most healing thing that you can offer them is becoming that person who says, I may not always fully understand what you're saying to me and what you're trying to tell me through whatever expression of communication is theirs, but I believe your feelings are real. I'm with you and I'm going to keep trying. Listener, I hope that that was helpful to you. I think that it's a hard row to hoe when you're not supporting yourself with education and information and others who get what you're going through. So I really appreciate that you asked the question. It shows such a depth of willingness to learn and openness to try something different. So thank you for writing in from Washington State and thank you for listening. I'll catch you guys again next week.