Supporting Medically Complex Autistic Children: Inclusion, Burnout and Pain

Supporting an autistic child with complex medical needs requires thoughtful coordination across home, school, healthcare, and behavioral services.

In this episode, Christine Dixon and nurse Sarah Merrill discuss the accommodations families may want their school teams to consider, including medication, feeding, breaks, safety planning, nursing support, adaptive equipment, and communication between school and home.

They also explore caregiver burnout, the limitations of respite care, the importance of coordinated support, and the emotional weight of constantly planning for a child’s future.

For professionals, the conversation offers direct guidance on staying within scope, respecting nurses and families, protecting privacy, avoiding intrusive questions, and adapting ABA sessions when a child is in pain or recovering from a procedure.

The episode concludes with practical insight into pain scales, teaching the difference between “hurt” and “sick,” and reducing the exhausting guessing game experienced by many families.

Acorns to Oaks is presented by Nurture & Nature ABA, providing compassionate ABA therapy and parent support in Valley Village and the San Fernando Valley.

Learn more or schedule a consultation: nurtureandnatureaba.com

Follow Nurture & Nature on Instagram, YouTube, Facebook, and LinkedIn.

This podcast is for educational purposes only and is not a substitute for individualized clinical care.

Transcript

SPEAKER_01 0:07

I'm Christine Dixon and I'm Sarah Moreau. And you have joined us for Acorns to Oaks.

SPEAKER_00 0:13

Welcome. All right, Nurse Sarah. What accommodation should be included in an IEP or health plan?

SPEAKER_01 0:21

So you are the expert on IEP, but I will discuss the health side, right? So anything that that child will experience in their day needs to be accounted for. So that means medication administration. Um, that means maybe breaks. Uh, how is feeding going to be done? If we have a feeding tube, I really think that that child should be included at the table because they are indeed eating a meal, even if it looks differently than the way the other children are eating, for example. I love that. Yeah, I I think there's um I heard once a push to oh, feed them in the bathroom so that the other kids won't get upset. And I think, come on, like include this child. Yeah. And I think that's really what it comes down to is inclusion, right? So, how can we help this child to be successful in an academic sense, also in a social sense, and have a regular life experience in the community as best as they can. I think that should all be included in the IEP. So we're talking about um oxygen administration if needed, uh, medication, feeding, any sort of uh skin care for certain kids that have uh skin needs, um, wound care if that does occur. Um, sometimes you might need a one-to-one nurse. It really just depends on what the needs are of that child. Um true. And a safety plan, always. Absolutely a safety plan, what to do if and and the preparation to carry that out.

unknown 1:48

Yeah.

SPEAKER_00 1:49

Inclusion really is important. And I see sometimes that um medically complex individuals are being excluded from things like field trips because they're like then we don't have a nurse to go with them. It's like, well, then get a nurse to go with them because this is part of their education, they need to have access, agreed. Yeah. And so things like that should be included in the IEP, frequent breaks, where where the child should sit, maybe preferred seating in the classroom. Um uh nursing services should be negotiated into the IEP, or a uh safety aid uh should be negotiated into the IEP. I think a discussion on communication as well.

SPEAKER_01 2:33

How how are we um communicating what happened in that child's day to the caregiver taking over when they pick them up? Yeah, communication buff that goes back and so important.

SPEAKER_00 2:43

Yeah, yeah. Especially with the nurse or yeah, yeah. Because things happen even with the G tubes or like a button or you know, a trach or any type of medical equipment, there needs to be ongoing active communication between the school and the parent.

SPEAKER_01 3:01

And documentation of any medication, you know, things really need to be followed so that we are all making the best decisions we can.

SPEAKER_00 3:07

Yeah. But take the time to get a letter from your doctor stating what he or she feels will be important accommodations. Uh, a lot of times we do that. We get uh the doctors to write us uh notes for the IEP process that say he needs certain accommodations, like so he needs one-on-one to be with him uh throughout the day for attention and safety reasons reasons. He needs uh toileting care. Yeah, I was gonna bring that up as well. Yeah. Um, so uh someone to be with him in that. Um they may need headphones, right? Um, for sensory issues. So the doctors a lot of times will write those notes as well. One thing that really irks me in the IEP process is so often there's the school nurse, and we're dealing with a child that might have complex meta medical issues, comorbidity with autism. And the nurse will be impact of uh of disability, and they'll be like, There's no physical impacts of autism on the child, the nurse's report will say. And I'll just every time I hear that, I just think we need to do better there. I think we do need to do better.

SPEAKER_01 4:24

I'm actually very curious. I as I've never um really been involved in the school system as a nurse, yeah, um, what that assessment looks like and what what that really comes down to. I'll have to reach out to someone I know for information on that.

SPEAKER_00 4:38

That assessment just means they're gonna talk to the parent. Oh, really? Yeah. They don't run any formal assessments that I know of, but I think a safety plan, medication distribution, times that should be gone over allergies, absolutely, um, you know, toileting care, um, cleaning of materials, brakes if needed. You know, some of these teachers are like, they cannot have a break. It's like he needs a break. Yeah, yeah. So I would recommend putting brakes into the accommodations as well. If you see signs of distress, um, you know, and then also um equipment, such as, you know, if if they want to play during recess, they might need a adaptive bike, they might need a walker, um, which I think is a really good thing. Uh but I have seen schools be like, well, they'll just be in a wheelchair all day. It's like, well, that's not really that's not really inclusion.

SPEAKER_01 5:41

Yeah, that's not really in their best interest, you know, if you know, so depending on the situation, too, you know, um, different kids have different needs, but I think the idea of just being present is not really the same thing as being included. Yeah. And um to facilitate the needs of that child so that they can be included, I think that should be part of the IEP process. But I am no expert on the IEP. Um, I don't know if you can add some more to what you have observed um in terms of health within an IEP and how we can advocate for our clients.

SPEAKER_00 6:18

I feel like as a, you know, I'm a board certified advocate in special education, and I feel like the nurse just kind of glosses over that part of the IEP the majority of time.

SPEAKER_01 6:30

Yeah.

SPEAKER_00 6:30

But I do think the parents need to pay special attention, make sure you have any allergy needs, any medication needs, any of those distress signals need to be um uh documented so everyone is aware, a communication book, preferential seating, taking breaks as needed, and then the adaptive equipment. Um, you know, if that if the child is capable or the the adult is capable, like that goes a long way.

SPEAKER_01 6:58

Is the nurse always included in the IEP or just yes, yes. So they should always be an assessment, whatever that looks like from the nurse.

SPEAKER_00 7:05

And usually it's a vision and uh hearing assessment, okay, is what they do um as well, which I think is great. I remember being um in elementary school being tested for vision and hearing. Yeah. Yeah. I remember that too. That's fun. How do caregivers prevent burnout while managing complex medical needs of a child that has autism and cormorbidities? Amazing question.

SPEAKER_01 7:32

I I I really have to hand it to all the parents out there. That is really challenging. Ideally, all families should have access to some sort of respite care where they are given a break. Um what should be and what is, however, is quite different. Um, I think that I know that there are families that I work with that still are struggling to find any sort of respite at all. They may be offered the service, but it takes a lot of trust to leave a medically complex child with someone else. And I don't know that there's a lot of training for our respite teams in terms of how to uh follow the safety plan, um, how to, you know, be involved in medical needs of a child that that has a lot of medical complexity. So I know that that has stopped some of the families that I work with from receiving those kinds of services. And then the stress levels are so high.

SPEAKER_00 8:34

They are.

SPEAKER_01 8:35

Because we're not just thinking about how hard it is to get through the day. There's always that constant worry of what will the future look like for my child? And what can I do today that will improve that outcome down the road? And that is an unbearable weight when you really look at all the things that these parents are carrying. Um another area that I think we could really improve on, we could really do better uh in terms of respite care for these families.

SPEAKER_00 9:01

Yeah, because the breaks are just as important as the active work. Absolutely. That's really what it comes down to is like taking small breaks, medium-sized breaks, and big breaks as well. Yeah. Because no person, no matter how great you are as a caregiver and how much love you have, um, even the best caregiver in the world needs breaks from time to time. They need to step away. You know, absolutely. Because what happens a lot of times our parents are so devoted and they are, and they're so courageous and strong, and the love they have for that child is enormous, and you know, it just makes your heart swell when you're talking to them or in their presence sometimes. And um, but you can tell they're tired, you know, like they've been up all night, and they're a lot of times they're also working a job um as well. So yeah.

SPEAKER_01 10:00

Yeah, and when are they getting those moments that are for them? When do they get to exercise and take care of themselves? Yes, and focus on their rest and their health. Um, I think that their health really does suffer. Um, in fact, there is research that shows that they have an increased risk of chronic illness and an increased risk of acute uh concerns as well because of the stress load and because they don't really have the capacity to do all of the things they need to do for their child, and then also the things they need to do for themselves. So they often sacrifice their own health, which is really sad. And I think that really kind of falls on us as a community um to work together to help these families. Um, but again, we have that siloed system, right? Where you go to respite if you need respite and you go to behavior if you need behavior and you go to the primary care if you need your checkups or your specialists, right? These things don't seem to work together, unfortunately. And it would be really nice if we could find a way to uh connect all of these areas of care.

SPEAKER_00 11:04

Yeah. Because I think it really is the responsibility of the insurance companies to provide parents with us. You shouldn't have to quit your job because your child has a developmental disability. That is the opposite of um inclusivity and the, you know, that that should never be. That's a horrible system where these insurance companies are not providing nursing care and not providing a uh, you know, equipped bed or a hoyer lift or something like that, which is vital to the basic care of the individual. Um, and that's where I, you know, I call upon the regulators to really come in because it can be very tough situations where they burn out, where they're just burnt, where they collapse, yeah, you know, emotionally or from stress or from not sleeping. And, you know, I think we do our very best to lift them, focusing on as many positive learning experiences and reinforcing experiences as possible. Um, and some of our parents are amazing, they're so awe-inspiring. Yeah, they really are. Yeah.

SPEAKER_01 12:16

But they do burn out and like they need support, but you're absolutely right that the the funder part of this can really um deter them from accessing the things that they need. And I totally agree. We need policy change to advocate for these parents and for their families. Yeah.

SPEAKER_00 12:34

Yeah. And for people to come in. Yeah, absolutely. What are the biggest mistakes professionals make when working with medically fragile, autistic children or medically complex individuals? Let's keep it in the realm of ABA because we have seen some mistakes. I mean, yeah, first and foremost, arrogance. You think you know, yeah, but you don't know. Back off and ask the nurse immediately.

SPEAKER_01 13:03

Exactly. And read the room in terms of stress levels. How are we doing today? Is this really a day for a lot of parent education? I think other mistakes that AVA professionals can make are um subtle. Making a comment, making a face. You know, I think parents are very um sensitive to how their child is perceived. Um, and a lot of the things that these children have to go through can be um unpleasant.

SPEAKER_00 13:34

Yeah.

SPEAKER_01 13:35

You know, not not everybody, uh certainly in ABA, uh, are trained in how to handle a lot of the bodily situations that these kids uh experience. And so if you make a face or maybe make a comment about something looking different or um that can come across as judgmental or can sew across. Yeah, it's it's really um unacceptable. And I know we're working really hard to make sure that our staff are aware before they go into homes of their nonverbal communication and also um bringing any concerns that they have to their behavior analyst, not directly to the parent, you know, or the nurse. Or the nurse. Yeah, because that's part of working as a team. And it's part of, you know, maybe there are um variables with this child that that the therapist might not understand. And so having that discussion internally first before we do it collaborating as a big team, I think does help with some of those um miscommunications.

SPEAKER_00 14:39

Yeah. I think a lot of times well-meaning uh behavior therapists are like, you know, my cousin has epilepsy. Well, you need to back off because there's a big difference between knowing about and knowing of or a living experience of something. Absolutely. Um, and then stay within your scope. Just let the nurses lead the team. Don't make comments about medical procedures, don't give your opinions, just let the nurse do her job and she will let you know. Okay, he's ready to go. Like, yeah, they'll let you know when to restart or to begin this session.

SPEAKER_01 15:18

Yeah. And and I think it's also good to get into a rhythm in terms of um, okay, the nurse is coming in to do uh some toileting or a diaper change or whatever procedure, that's a great time for the therapist to step out and give privacy. Um, I think sometimes professionals can feel like, well, this is my domain and I'm doing this work, and so I'm gonna stay right here until they're ready to continue. Well, sometimes that's not as respectful as you should be in that kind of situation.

SPEAKER_00 15:47

Yeah. Giving privacy unless there is a plan for you to support that nurse through behavioral issues. Yeah, through behavioral issues. Like we had a little one who had a trach and he kept poking the trach and he was causing harm. Yeah. And so we did have to assist the nurse in some behavioral strategies while she did other things. But that would that was talked about and agreed upon beforehand. Absolutely. Um, so I think that is really essential. I think the biggest, most arrogant thing that you can do is saying, Well, I know because my cousin's friend has autism epilepsy, or I know because you don't know. Yep. You know, and you need to check your experience at the door and kind of sit back, listen, and watch these routines and learn the flow of the house and learn, okay, when is good time to run session and run programs and when is not. And the people in the house will kind of let you know of the routine and say, okay, he's all set to go, and they'll like, you know, bring him back. Yeah, they'll bring him back in session. And so, um, and then not to ask overtly amounts of questions. You don't need to know everything about their job because you don't need to do a nurse's job. And you know, like what's that? What are you giving them? Like those types of questions can also uh also come off as extraordinarily arrogant from a clinician.

SPEAKER_01 17:21

Yeah, yeah. It it can be really distracting as well if you're trying to do your work and if that work requires some sensitivity, which I think most nursing work does, um, to be answering questions about, well, what's that and what's this for? And, you know, is not necessarily uh helpful. Um, I also think that in communication with parents, um, a mistake that I witnessed once uh was someone asking, Well, did they ever walk? Could they ever do these things? Yeah. You know, and and asking questions about ability from the past can be so traumatizing, whether or not, you know, the answer is yes or no. It doesn't matter. And it certainly doesn't matter for our behavioral intervention in that time. So I think a lot of those mistakes are made when therapists are uncomfortable and they feel like they need to say something, when sometimes the best thing you can do is just be quiet, be present, and be supportive.

SPEAKER_00 18:20

And watch and look and listen and learn. Yeah. So that you can better gauge the flow of the environment, right? Because that's what behavior analysts are really um studying is the environment. Absolutely. Yeah.

SPEAKER_01 18:33

Yeah.

SPEAKER_00 18:34

Sometimes we get medically complex cases where the nurse is not there. And so sometimes if uh a patient is coming out of having an operation, like uh, you know, let's say they got their adenoids out or something like that, we might use a simple pain skill, which is pretty universal. And we'll just say, How are you feeling today? to gauge the amount of pain they're in from the very start of session, so that you can then either lighten the session load, have more play-based session. Um, and I think that's a good rule of thumb if you have any type of TBI traumatic brain injury. You know, we have a patient that had TBI and can get headaches. And so it's really important for him to identify where he's at in pain tolerance. Yeah. Um, and that's a skill as well.

SPEAKER_01 19:28

So there are a number of pain scales that you can use. So, for example, if you have um a nonverbal child or a baby, for example, in the hospital, we might use um, you know, where we just kind of gauge based on their nonverbal communication, how much pain that we think they are in. Um, if we have faces, right, which is I think one that most people are familiar with. The faces, which yeah, most commonly used for children. Um, but we have to train them on that too. Yeah. Because I've had I've had clients in the past that I know are not feeling well but are pointing to the happy face because that's the good one, right? So I get happy faces at kindergartens, right? I want the good one. I want the happy face, and I want the happy face for them too. But I think, you know, making sure that they understand the question that we're asking. And then of course there's the numbers, right? That's what most of us adults are used to if we're in the hospital on the scale of one to 10. Um and it's really interesting a little sidebar here, but uh a lot of the pain management is based on that number. Yes, I know. So uh, right. Um, again, like treatment is affected by by that response.

SPEAKER_00 20:38

And uh funny you say that because my my husband was in the hospital and uh he had just gotten, he said the the nurse came in and was like, on a scale of one to ten, how much pain are you in? And he was like a six, and then they like shot something up his arm. Yeah. And then he said, Remind me to say six again next time. Okay, all right. Uh hospital experiences, yeah. I'll say six again, remind me if I forget, tell me to say six.

SPEAKER_01 21:09

And I really am glad that he's doing very well today. He is a good thing. But yeah, funny. So it does, it does affect treatment. Um and we are taught as nurses that pain is subjective. So I even though I may use a scale for a baby where I just look at you and kind of determine, yeah, it looks like this much pain. In adults, we won't do that. We'll just accept what you have to tell us because I can't tell how much pain you're in. I don't physically know. Um, so I think it's really a good skill for our um medically complex clients to have because they'll probably encounter something similar throughout their life, depending on their health and and procedures that they have to experience.

SPEAKER_00 21:52

Yeah. And I think it's really important that behavior analysts in their program teach skills like discriminate hurt versus sick. Yeah. Right. Yeah. Like we need to teach these things and we need to teach them with multiple examples over and over again.

SPEAKER_01 22:08

Yeah. It's so important to be able to communicate those things.

SPEAKER_00 22:11

Yeah. So and that's the most frustrating thing I hear from parents. It's like, I'm so tired of playing the guessing game. I think that's one of the most exhausting burnout things for parents is when they're playing the guessing game. Like, do you want TV? Do you want this? Are you done eating? Are you old? Do you want more? Like, yeah, you know, yeah. When parents play the guessing game, and then we get that that communication flowing, and they're just so relieved that they no longer are playing as much of a guessing game as they were. Yeah. Yeah. So the pain scales can work, but you have to train on them. We have to learn it. Yeah. Yeah. Yeah. As an adult, I went into uh the the urgent care once and I said, I have a horrible stomachache. And they're like, What's the scale, pain scale and on a scale of one to ten? And I said a nine. And they said, We're gonna give you a shot of morphine. And it's like, you know what? I'm feeling better. I think it's more like a three now. I don't think it is like a nine. So you're right. Yeah. Pain scales can really tell them nine, like for sure. Yeah. Yeah. So very subjective, but a number that works.

SPEAKER_01 23:17

So yeah, yeah, yeah. And and it should affect our treatment as well. And I think it does when we know, hey, you know what? He's not feeling great right now.

unknown 23:24

Yeah.

SPEAKER_01 23:25

We're gonna do maintenance tasks for a little bit. We're gonna hang out and do some stuff that I know he does well. We're gonna play some games, play some games, yeah.

SPEAKER_00 23:33

Engage in stuff that's fun, silly, yeah, yeah. Get his hands going, get his mind off of it. Yeah, yeah.