What NOT to Do With Your Autistic Child (For Parents & Caregivers)
Hello, fellow parents of a child with autism spectrum disorder (ASD). Welcome to a place where we can talk openly and honestly about what it’s like to parent our children. If you’re like me, you could use a place like this.
There are so many voices of experts (and other parents) telling us what to do and what not to do. This, of course, isn’t unique to our circumstances. This applies to ALL parents. We are constantly surrounded by a barrage of advice so intense that it can be impossible to know where to begin and what to believe.
Given that, this post is not meant to be ANOTHER voice telling you what you’re doing wrong, nor EXACTLY what you should be doing. Instead, my aim is to shine some light on the many unhelpful things we may find ourselves saying and doing to our children with autism, and offer some possible alternatives that have worked for me as a parent and professional. My son, Sean, is autistic, and I also work with neurodiverse families, giving them tools to help change challenging behavior and find more peace at home.
I know you love your kids and only want to help them be safe and happy and seen; and I know how easy it is to say and do the “wrong” things with our kids and worry incessantly that we are “messing it all up”.
The truth is, we don’t know what we don’t know. I’m here to offer some well-researched and life-tested advice about what NOT to do with your autistic child (and more importantly, what to do instead). As always, take what feels right for you and your family, and leave the rest behind.
9 Things NOT to DO With Your Child with Autism
1. Don’t overlook the importance of your child’s physical environment.
For most us, our physical environment plays an important role in our development, comfort, and peace of mind. For children with ASD, this is all heightened. Creating a physical environment that supports their needs is a critical part of helping them thrive.
From a very early age, Sean’s need to climb was constant. We looked to medical guidance to understand if this is an intrinsic need, attention driven, or were we just blessed with a very active child. Over time we’ve developed strategies to help him have as much movement and stimuli as he needs. It took a lot of trial and error.
In our home, this not only looked like making sure the environment was safe (furniture away from railings, multiple baby gates, etc.), it also means providing lots of safe climbing/movement alternatives.
When he was younger, Sean used to love climbing up on a kitchen chair, crawling across the table and then down a chair at the opposite end. He could do this 30+ times if it was up to him! Over time, we discovered that a mini trampoline, a tunnel with obstacles, and a body sock helped refocus his energy.
It’s also so important for us to remember that our children are always looking for a way to have some control over their lives as they get older. Allowing them to be involved in changing and creating their home environment can be a wonderful way to give them that independence they crave.
2. Don’t ignore symptoms of anxiety or assume they are just part of your child’s autism.
You might be surprised to learn that approximately 40 percent of youth meet the clinical criteria of an anxiety disorder compared to only about 7 percent of neurotypical youth, according to U.S. government health statistics. Anxiety can show up in our children as worry, fear, irritability, trouble sleeping, trouble focusing, headaches, and stomachaches. Which means it can be difficult to identify these symptoms among other behaviors typical for children with autism.
In addition to autism, Sean also has sensorineural hearing loss, and even as a professional behavior analyst it can be tricky for me to read his body language and understand the reasons for his behavior. Sean displays an enormous amount of hyperactivity, which can look like leaving his seat repeatedly, an awkward walk with arms and legs going different directions, climbing everything, grabbing tree branches, and the list goes on (Sound familiar?!). It can be difficult to know if his body is just high energy or if he is anxious about something. Sean’s splinter skills can also make it hard for me to interpret his needs. Our goal is for him to engage in functional communication, which is an ongoing learning process.
Because body language is not always a good gauge of actual emotions, I pay close attention to his overt behavior. For instance, Sean has always liked going to Irish dance practice on Saturdays. (This kid loves to dance!) But, when I told him that his teacher said he is ready for his first feis (an Irish dance competition), instead of showing his anxiety, nervousness or worry in his face or body, he showed other behaviors that clued me into these feelings. He suddenly told me dance was boring and started asking non-contextual questions about other activities, people and places. Instead of communicating the way his peers might, I could tell that his change in behavior was a way for him to tell me something was wrong.
The best thing you can do is pay close attention to your child and trust your instincts. I suggest keeping a notebook or marking important observations on a calendar. This can help you look back and determine how often certain behavior is happening, potential triggers, and what helps.
You know your child best, and if something feels off reach out to your pediatrician. They may offer some strategies or refer you to a mental health professional. If needed, look for someone who specializes in working with people with ASD so they can determine if CBT or other methods may help.
3. Don’t avoid talking to them about their autism diagnosis.
As parents we want to keep our children safe and happy. Which can sometimes mean we avoid talking about the hard stuff. I get it, AND I want you to have the tools you need to lead those conversations. While most experts agree that talking to your child about their autism diagnosis is something that should happen often and early, this is a very personal decision. In my work with neurodivergent families I’ve see that many have deeply rooted feelings about whether to keep their child’s diagnosis private or public. Even sharing with extended family can be a difficult decision. There is no one right way to navigate this.
Our family’s decision to share Sean’s diagnosis with the world was based on my personal experience growing up with a brother with Down syndrome. From the very beginning we began using words like “autism,” “hard of hearing,” and “hearing aids”. As young as 4 years old, Sean began to get questions from peers like, “Why do you wear those in your ears?” We are likely not far from, “Why do you get extra time on that worksheet?”
We’ve prepared Sean by modeling the language that he can use with others: “They help me hear,” and, “My brain needs more time to understand.” Our priority is giving him the language he needs to articulate his self-identity.
Our children need us to validate their difficulties and give them language to articulate what is happening inside of their bodies. By offering space for these talks we are modeling what it looks like to have difficult conversations and sort out challenging feelings. Here are some more tips for talking to your child about their autism diagnosis.
At the end of the day, you are the parent and you know your kid best. Trust that you will know when the time is right to navigate these conversations.
4. Don’t take their responses or actions personally.
Easier said than done, right? There are only so many times you can be ignored or yelled at before you lose your patience. And losing your patience is a natural part of parenting.
Like when Sean says, “You are not a good mom,” when I deny him Oreos before dinner. Oooph. Kids certainly know how to pull on our heartstrings. This is never easy to hear even though I know that it’s not true.
In moments like these I try to follow the same advice I give other parents: Work on identifying what your child is actually trying to communicate, consider what they could say instead, and help model that language/behavior.
In times like the “Oreo Moment,” I know that what he’s really trying to communicate is, “This isn’t what I wanted! Ugh, Mom, it’s not fair!” I can help by not taking his comment personally and instead say something like, “I know you’re frustrated that you can’t have cookies right now.”
Ultimately, we parents need to have your own strategies for emotional regulation that we can use in these moments. We can’t help your child change their behavior if we are disregulated ourselves.
Take a deep breath, remind yourself that you are not a bad parent, and that none of this is personal. Then step in and help your child develop behavior to keep them happy and healthy.
5. Don’t start new activities, launch a new routine, or go to new places without preparing them first.
One of the first things you’ve likely learned about individuals with autism is that change is hard. (Change is not easy for any of us, right?!) But change is an inevitable part of life, so despite your best efforts to use familiar routines, there will be many times you’ll have to help your child navigate an uncomfortable change. Here are some tips for these moments:
Set expectations. Talk about the change BEFORE the change actually happens if at all possible. If you know something is going to be different about their day tomorrow, talk about it that morning. If you have an appointment change, talk about it before showing up for the appointment. Do your best. Sometimes this is simply impossible. In our family we say, “Let’s talk about the day.” This has become part of our daily routine as a way to help Sean understand what to expect and the importance of flexibility if there is a change.
Give space for lots of questions. Many children with autism have big emotional reactions to change. You won’t be able to (and shouldn’t try to) stop these reactions. Instead, keep yourself steady and available to answer as many as possible. Repeat and stay consistent to help them ground themselves in the new plan.
Leave more time for adapting to the new plan. A new activity, routine or place is going to take more time to adjust to. Know that going in and leave as much time as possible for that new transition.
Don’t change too much at once if possible. Try changing only one thing at a time to build new routines.
6. Don’t force your child to socialize with other children.
We all want our children to have friends, and one of the hardest parts of parenting a child with autism is witnessing their difficulty connecting with their peers. Being easily over-stimulated, uncomfortable with new people/places, and unable to understand nuance and facial expressions can make it challenging for them to make friends.
However, it’s important not to push them into unwanted social situations and not to compare them to what other kids are doing.
As a parent, this is something I often worry about. I see how Sean interacts with his peers when I’m around and wonder if it’s the same when I’m not.
If you’re also wondering about how your child is socializing, try these strategies:
If they are younger than school-age, take them to a park and see how they interact with other kids. Do they respond to other children’s request to play? Do they share their name?
For school-age children like Sean, I like talking to the teachers to find out what he’s doing on the playground and if he is playing with peers.
Instead of forcing their interactions, consider creating opportunities for friends to come to your house where your child is most comfortable. Ask your children’s teachers if they would recommend a playmate based on their behavior at school.
Most importantly, consider how you can create opportunities for your child to practice the social skills they are actively working on, which may be very different than their peers.
7. Don’t put your child in a time-out for difficult behavior.
Discipline is a tricky topic for most parents. Understanding how to direct your child towards socially acceptable behavior in a way that does not include punishment is key. Autistic children are likely acting out because they are frustrated about being misunderstood, not unlike their neurotypical peers.
Time out is a punishment procedure, which can do more harm than good. Instead, we want to teach our children what to do instead of the difficult behavior. Here’s an example:
If Sean asks for Oreos before dinner, I have two options:
#1: I say no. He gets mad and hits me with an open hand. I give him a time out.
In this scenario he may be learning that hitting is not going to get him the Oreos, but he is NOT learning what to do instead.
#2: I say, “No, Oreos are not available right now, but you can ask for applesauce or string cheese.” He asks for applesauce and I give it to him.
In this scenario he still does not get Oreos, but he is learning what foods are available before dinner AND how to ask for them.
Helping our children find the alternative to a difficult behavior is one of the most helpful things we can do for them.
8. Don’t jump in a help your child calm down every single time they are upset.
This can be a hard one. We never like seeing our children in distress. (And it’s easy to feel embarrassed when our kids’ big feelings are on display in public.)
However, one of our core jobs as parents is to help our children find and practice their coping strategies. The irony is that this happens most effectively when we give our children space to figure it out themselves.
When Sean is having a difficult moment and I step in to prompt him or facilitate his calm-down strategies I am doing him a disservice. In the moment he may calm down more quickly, but he’s also learning that he needs me to calm down and has missed an opportunity to find and practice coping strategies on his own.
Of course, we first need to help them identify the possible strategies. Some of these we teach our kids, and some our kids find on their own. Just like all of us, they may need to try different things before they find the ones that really help them. For some of us going for a run is a way to calm down, for some of us it’s deep breathes or a cup of tea. Provide plenty of opportunities for your child to practice various coping strategies and pay close attention to see what works.
You never know what will stick! I’ve seen dozens of coping mechanisms over my years working with families. Everything from picturing the other person as an Anime character, to going through the alphabet and naming a song for each letter.
It doesn’t matter what the strategy is. What matters is giving your child an opportunity to manage their behavior on their own and supporting them from the sidelines.
9. Don’t rush them.
Children with autism will not be rushed. They will do things at the pace they are comfortable with. Which is not always the same pace you want or need them to move.
There will likely be LOTS of time as a parent when you really want your child to hurry up. Getting ready to leave the house in the morning is often one of these times. Sadly, telling them to put their shoes on faster, get in the car quicker, or hurry up is not going to work.
In fact, rushing your child will likely cause them more stress. The last thing you want is a stressed child leaving the house.
I hope you’ll take some solace in knowing that you are not alone. This is a very common experience for parents of autistic children.
The name of the game is to remove as many decisions, distractions, and extra activities as possible. For morning routines, this might look like:
Packing school bags the night before.
Laying out clothes the night before.
Getting up earlier (and leaving more time for actually getting out the door and into the car.)
Having less conversations.
Even with all of this, mornings tend to be a busy time. Do your best to keep calm and avoid rushing them as much as possible.
8 Things NOT to SAY With Your Child with Autism
1. Don’t say nothing.
As a parent, you likely know better than anyone this truth: all children deserve to be treated with respect. Every person matters. Sadly, when autistic children are non-verbal they are often ignored or treated as if they are invisible. But they can often grow to understand the words spoken to them even if they can’t respond in words. Even before you figure out a way to help them communicate, keep in mind that everything you say is having an impact.
My brother, Mikey, has Downs syndrome and has no intelligible vocal verbal language. Even though we can’t understand his sounds, we still include him in conversations and never talk about him as if he’s not there. He may not be communicating the way we do, nor able to understand the complexities of our conversations, but he does understand phrases, gestures, and body language. Over time Mikey and our family developed a way of communicating that worked for him.
Ultimately, we are modeling language for our children. Not only is it important to say something and be present, but there are many strategies you can use to help them develop how they communicate and connect.
2. Don’t tell your child to sit still or stop moving.
As you likely have already experienced, autistic children typically need to move their bodies A LOT and simply telling them to stop has little to no effect. Stimming (any repetitive behavior that helps a person comfort or calm themselves and feel more in control) is typical in many neurodiverse people and may be more of less welcome in various environments.
This is one area where my professional and parent perspectives can sometimes be at odds. While the behavior analyst in me knows that helping Sean lean on his self-regulation strategies is the answer, I often find myself frustrated and wondering if his behavior is something that he can control or something that his body needs. The truth is, there is no one-size-fits-all answer.
Over time you’ll figure out the things that work best for your child. Sean does best when we encourage taking breaks, doing stretches, and are thoughtful about how we transition him from high activity to focused tasks.
When I’m working with a family, I often suggest trying a routine where their child engages in ten minutes of exercise and then participates in activities as usual. This pattern has shown to help autistic children decrease their hyperactivity.
Creating a sensory tool kit can also help them navigate the world and stay regulated. This may include items such as: fidget spinners, noise-cancelling headphones, sunglasses, weighted lap blankets, and so many other things. As with everything, keep trying different options until you discover which tools work best for your child.
3. Don’t expect your child to remember something after telling them one time.
Our autistic children often need longer processing times that their neurotypical peers. We may be able to filter out distractors like noise, light, and movement, and just focus on the task at hand. For our neurodiverse community, this may not be as easy.
My brother Mikey, for example, struggles with short-term memory. I can ask him to go to the kitchen to get a fork, and he’ll come back 30 minutes later with a jar of sprinkles! He was likely distracted by any number of stimuli on his trip. Short, single-task instructions with a sign or picture cue work best for him.
For my son, Sean, I know that he is less likely to remember something I tell him when his body is busy. It will require lots of repetition. Visual reminders like a picture schedule or an image of what’s coming next helps him stick to his routines. But repetition is also part of what he needs.
4. Don’t refer to your child as disabled.
Although the language around autism (and so many other physical and mental conditions) is constantly changing and evolving, there is one thing we know now for sure: people with autism do not want to be referred to as disabled. In part this is because it simply is not an accurate way to refer to people’s autism. Simply put, neurodivergent people have brains that work differently than neurotypical people.
More importantly, across all types of differences, we’ve culturally and professionally shifted from Identity First Language (IFL) to Person First Language (PFL) and now back again. Instead of language that identifies differences first (“autistic child”), we use language that puts the person first (“child with autism”).
The core principle is this: talk to a child with autism the same way you would any other: with respect for their dignity and encouraging their sense of autonomy.
Respect looks like giving them your full attention and really hearing what they have to say. Dignity means seeing them as an equal and an individual. Autonomy is remembering that they have the right to make their own decisions.
The nuances around this keep changing as neurodivergent people have a bigger voice in their care and place in the world. Now, some individuals prefer IFL because they feel it celebrates their differences. As with most things, it’s most important to take our cues from each individual when it comes to choosing words to describe them.
Sean is still very young, but we are already modeling the language that he can choose to use in his future. As he gets older, we will take our cues from him for how he wants to identify. In the meantime, we focus on his strengths and acknowledge his deficits.
5. Don’t use phrases that have double meaning.
As your child begins communicating, you’ll quickly learn that children with ASD often take things very literally. Which can lead to a lot of confusion if you use phrases that have double-meanings. If you say things like “step on it” or “cutting corners” or “break a leg,” you are probably going to be met with a confusing look and a LOT of questions.
Understanding the nuances of language is difficult. Having to translate language from one meaning to another is even more difficult. Imagine the last time you heard someone use a word you didn’t know. You likely used the context the sentence or gestures to make a best guess on the word’s meaning.
Now, take away the context. And the gestures. And the social cues. This is often what idioms, sarcasm, and tone can feel like for someone with ASD.
For Sean, we began using gestures that symbolize what certain idioms meant when he was young. If I said, “Wait.” I would hold my hand out and use the ASL sign for “Wait.” Later, I started saying, “Hold your horses.” and paired it with the same gesture. We also point out specific body language and facial expressions. If I am surprised, I will show him that my body is telling him I’m surprised by my raised eyebrows. This helps him learn some of the nuances that are naturally challenging for him.
6. Don’t give your child a lot of instructions at once.
Many people with ASD struggle to string together multiple instructions at once. They do best when given one task at a time, especially when learning to adopt a new routine. The level to which you need to simplify the directions will depend on the age and needs of your child.
The key is to break everything down into smaller steps.
For instance, if you want your child to “get ready for school,” you’ll need to break that down into a series of instructions. For some children, this might mean telling them one specific task at a time: “First brush your teeth, then get dressed, last put on your shoes.” However, some or all of these tasks may need to be broken down further. Perhaps they need to learn the steps to brushing their teeth before they can get the next instructed task. The more space and time you can give around instruction-giving, the smoother things will go.
If I give Sean more than two instructions at once I can practically guarantee that both things will not happen. I’ve learned to get his attention first and use specific language like “first, next, last” to help him understand the order of his routines.
The more you can start with small, single-step instructions, the more successful your autistic child will be. And the more we can set them up for success, the better.
7. Don’t tell your child, “It’s fine,” when they get upset about a physical sensation.
Children with ASD often find sounds, tastes, touches, smells, and sights overwhelming and experience these things more intensely than their neurotypical peers. Discovering your child’s sensory boundaries is an ongoing process. The key is to listen to them and not minimize their experiences.
Each individual is unique. When it comes to eating, for instance, I’ve seen children who say they don’t like specific food only to have it turn out that it’s not about the taste at all. The child is actually sensitive to the temperature and texture.
This is really about helping your child learn to communicate, which requires you to listen with curiosity, ask questions, and avoid assumptions.
They may not be able to verbally communicate pain, for instance. Instead, encouraging them to use a thumbs down/thumbs may be more accurate.
Get a notebook and write down when they complain. Note what they are saying and doing. It can be difficult to remember the details over time and make connections. A notebook can be a so helpful for this.
Once you determine what’s difficult for them you can begin to build a sensory toolkit and strategies that will help them navigate those moments.
8. Don’t try to make your child feel better by saying things like, “You’re normal, just like everyone else.”
As difficult as it is to see your child struggling to fit in and find their way in the world, denying their experience will only make it harder for them. Avoiding the word “normal” to describe their neurotypical peers can also go a long way to helping your child feel safe and connected to other children.
Give them the language and tools to talk about their diagnosis in an age-appropriate way. As they begin to understand that they are both similar AND dissimilar to their peers they can begin to define their own identity.
Celebrate your child as a whole. Their diagnosis is just part of who they are. Yes, Sean is autistic and has sensorial hearing loss. He is also kind, a good brother, loves matchbox cars, and is living his best life when he is dancing. Our family celebrates him as a unique individual just like his sister.
BONUS: What NOT to Say to Yourself.
Chances are you’ve read many things here that you are NOT supposed to do and say….that you have said and done. Let me remind you again that this is not about giving you another list of things you have to do to be a “perfect” parent. That perfect parent doesn’t exist. If you find yourself saying to yourself things like:
“I’m a terrible parent.”
“I can’t do this.”
“I’m messing up my kid.”
Take a break. Take a breath. Remind yourself that you are human and are doing the best you can with what you have. Do something kind for yourself. And then face the next moment, event, or day.
The Most Important Takeaways.
Your relationship with your child is complex.
As you learn to understand their specific needs and challenges, you’ll begin to find the next best step for them and your whole family.
What I hear most from the parents I work with is, “I want to learn how to play, interact, teach, and connect with my child.”
The strategies above are all part of the puzzle. They may not all be applicable to your family. Take what you need and leave the rest.
Most importantly, remember to consider the perspective of the neurodiverse child. Each strategy they learn is a step towards them begin able to better communicate, process their environment, and understand expectations. Over time, this helps them have less uncertainty, more autonomy, greater connection to others, and more independence.
If you found these tips and stories helpful connect with me on Instagram for conversations and support.
