How to get Your Child with Autism to tell You what's wrong when He is Sick

Last week, my dog Lucky got sick. I figured he ate something he shouldn’t have and didn’t think too much of it. So I curled into bed and fell fast asleep. A couple of hours later I woke up when I heard him getting sick again. I went to get a towel to clean it up and to my horror, there were five piles of vomit on my kitchen floor. Now I knew something was wrong.

We drove to the emergency vet and the entire way there, I kept asking him what was wrong. He’s a dog. So,  no response. When I got there the very kind vet asked me all sorts of questions. Did he eat anything he shouldn’t have? Does he have stomach pain? I had no idea! I am so grateful to have had someone willing to help my baby in the middle of the night but it was so frustrating.

It was so hard to see your pets sick. The hardest part is that they can’t tell you what’s wrong. But there was nothing I could do to get him to answer… I don’t think I ever felt so helpless and alone.

For the past 12 years, I have been working with kids with Autism, parents have told me over and over and over that the hardest part of having a child with Autism is that if something is wrong, their child can’t tell them. I have genuinely empathized. It’s a real problem, with no easy solution and truth be told, I never really tried to find one.

Now I am not comparing my dog to your child. I am not in your shoes. I can only listen when you tell me how much it hurts to see your child sick and not be able to ask them what’s bothering them. But last night, I had a small taste of how hard it is when someone you love is sick and they can’t tell you how to help them. As I was looking into my dog’s eyes, I was thinking about you and decided to never again brush a parent off how hard this is for a parent.

I sat down to write my three best tips on how to solve this for you. Honestly, initially, nothing came to mind. I checked google for some inspiration and came up blank. You probably could have told me I would because I am sure you have done that search before. I called up some friends who have also worked with kids with Autism for years and no one seemed to have a solution. They all told me the same thing– Just tell them as parents they will know and to trust their gut. I wanted to come up with something better for you.

Here are my three best tips. Honestly, they aren’t perfect. There is no perfect answer to this problem. But here are 3 strategies that could help. I will share why they might work, how to carry them out and what their limitations are. I encourage you to do all 3 and not single out one of them. They are designed to work together and not in isolation.

Before I get to the strategies I want to commend you for reading this far. your child is so lucky to have you as a parent. You are the best thing they have going for them. I am here to help you. We are on this journey together. Autism doesn’t ever stop for your family and I will never stop creating content to help and support you. On behalf of myself and every practitioner who has ever brushed off your concerns, I am sincerely sorry. Now let’s get to helping your child.

Strategy 1 – You must teach your child to identify ‘what’s wrong?’

The best way to start this off is by using pictures that have obvious “mistakes.”

Here are a few examples of products I like to use: (In full disclosure, these are affiliate links. If you plan to purchase them, please use these links. It will not cost you any more but will help me offset the cost of creating this free content for your family.)

Show your child the photo and have him point to the mistake in the photo. This activity can be done with a child who is vocal or nonvocal. Make sure to use as many exemplars as possible to make sure your child truly understands the concept of what’s wrong.

If your child does have language, you can also perform actions with objects using an object incorrectly. For example, trying to eat with a spoon but holding it in the wrong direction so nothing is scooped up or trying to draw with a marker that has the cap on. Or try to eat cereal with a fork. The examples could be endless.

Another way to teach this would be to tell short stories to your child both with or without a visual.

For example, “Jim was riding his bike. He saw a dog and fell on his bike.” Show a photo of a boy laying next to a bike holding his leg and say what’s wrong? Your child would learn to respond. Jim hurt his knee.

How you teach this will vary greatly. It will depend on your child’s age and cognitive and verbal abilities.

If you do all of these things, your child will almost certainly understand the concept, what’s wrong. What I cannot guarantee is that it will generalize into your child’s understanding of what’s wrong with him when he is sick. But, what I can tell you for sure is if your child doesn’t know what, “what’s wrong?” means, it is impossible he would be able to answer. Like many other things, children with Autism may not necessarily learn this concept naturally and must be taught directly.

Strategy 2- You must teach your child to identify their body parts AND to identify sensations on their body parts.

Teaching a child to identify body parts is one of the first things that practitioners teach. “Touch your head” is usually one of the very first lessons added into any applied behavior analysis (ABA) binder. That’s because it is easy to teach, prompt, and show a child that they are supposed to respond when provided with a vocal instruction.

This is then usually generalized by having a person identify body parts in pictures such as books or flashcards. This is critical. If you don’t have a good set of body parts flashcards, this is a set I like a lot.

You can start by putting out multiple cards of single body parts and having the child select the correct one and later generalize is by having them identify body parts on a person.

Like with any skills, the more exemplars the better. Generalize is critical.

There is never a way to be 100 percent sure that a child will generalize a skill in a new way when it comes up in his everyday life. In my opinion, it is a stretch to think that teaching a child to touch their head or find a person’s head in a photo of them will lead to them telling you their head hurts when you ask them, “what’s wrong?”

To identify what is hurting them when they are sick, it is useful for them to be able to identify sensations on body parts.

This can also be taught discretely by having a child identify you creating some sensation on their body part. Now, I am not suggesting you hurt them to identify where they are feeling pain! There are many benign ways to do this!

For example, you can touch their head, hold their hand or put your hand on their shoulders and ask, “Where I am touching?” You can also put an ice or heat pack on part of their body and ask them where it is hot or cold. This will get him used to identifying sensations on his body when you ask what is wrong.

Other suggestions are putting paint, shaving cream or water on part of their body and asking them to identify where it is. The possibilities are endless. Feel free to comment on this post with some of your ideas!

Again, this exercise does not correlate perfectly with identifying what’s wrong when they are sick but it can be very useful and will work for some children.

The key is to teach this in as many different ways as possible so that they will be able to functionally use the skill in a different way when they need to in real life.

Strategy 3- Do a formal assessment.

When all else fails, you will have to assess your child yourself. The truth is, you will know something is wrong when it is. You know your child better than anyone else and you will feel it in your gut.

Knowing what is wrong can be a little more challenging. The good news is there is an assessment you can quickly and easily do at home that has been specifically designed to assess pain in non-vocal children with a developmental disability. Its accuracy has been scientifically validated and is used by many major hospitals.

However, it is a simple checklist that’s pretty straightforward to complete and interpret. There is no reason as a parent couldn’t use it at home. You can access it here for free. I encourage you to save this blog post or download the pdf to your phone so you have it if you ever need it.

I hope that these tips will help your family. I encourage you to share this post with your ABA provider. I have been providing ABA for a long time and I can tell you, these are not necessarily standard ABA lessons. There is a good chance your ABA provider may not have thought of them or had exposure to them.

Although I have used all of these teaching strategies in the past, until now, I have not made these standards activities to do with all of the children I have worked with. A good provider will welcome new ideas and strategies. I do! On that note, if there is anything you have done for your child that I did not include in this article, I encourage you to share them in the comments of this post.

It takes a tribe and we are all in this together! 

References

Lynn M. Breau, G. Allen Finley, Patrick J. McGrath, Carol S. Camfield; Validation of the Non-communicating Children’s Pain Checklist–Postoperative Version. Anesthesiology 2002;96(3):528-535.