About a week ago, I wrote a very long twitter thread directed at parents of autistic kid, and am now putting it in blog form for easy access.
Here are the most common questions I see from parents of autistic kids, answered in this blog post. If you have other questions you’d like answered, feel free to put them in the comments.
Why does my child get so angry suddenly? Why do they not want to do X task? Why do they get upset when I ask them to do anything?
Answer: Many parents interpret autistic kid’s anxiety as anger. When we “sound angry” we are usually in distress. We may already be stressed before you even notice at all. We may be under stress of a loud/bright/smelly sensory environment that neurotypicals don’t detect. We may be stressed due to the quick task switching expected of us which is very hard for us, or the phrasing used.
We often need to understand the why of something before doing it. And we need you to give us the emotional context behind the reasoning. Ex. “I’m really exhausted today doing X, Y, and Z, and was wondering if you could consider helping me sweep the floor today.”
That’s very different than “Will you sweep the floor today?” or “Please sweep the floor today.” For further detail, here’s a more detailed explanation on anxiety and demands in autistic people.
Why does my child meltdown so much? They are fine one minute and then screaming/hitting the next.
Answer: Most autistic people are under a lot of stress all of the time. I really do mean all of the time. Most of us have sensory sensitivities which we are constantly dealing with. We’re hearing the hum of the refrigerator, the high-pitched noise of the computer, dealing with fluorescent lights that are way too bright and nearly blinding for some autistic people.
We don’t express that stress because we are always experiencing it, unless we use sensory supports (headphones/earplugs/sunglasses/compression vests – more general supports here). And when we complain about it, it is often ignored especially if parents don’t know about sensory sensitivities.
When a parent says the kid had a meltdown “out of nowhere” I ask what happened that day, what changes have occurred recently. Often there are some really obvious changes (to us)
For example, –
- Going back to school
- Sibling being born
- Move to a new house.
All of those events above are sensory changes. Who knows what sounds/lights/smells are in a new house, or how interacting with a sibling (babies crying!), or going back to school (fluorescent lights, kids talking) affects an autistic kid.
Sometimes it can even be as small as a change in routine, such as their mom tucking them into bed instead of their dad, or their parent leaving the house for a few hours when they usually wouldn’t. It can be chores being placed on the kid without proper help or explanation, especially because many of us have executive function difficulties and may need much more clarification, an example of said chore, or the task broken down into multiple steps.
Alexithymia – Difficulty Recognizing and Labeling One’s Own Emotions
The other big issue that so many parents don’t know about is alexithymia, difficulty recognizing/labeling one’s own emotions. Many autistic people have alexithymia. We often don’t even know when sounds/lights are bothering us especially if it’s a low level of stress. It takes practice and conscious effort to figure out what our bodies are feeling. With the combination of alexithymia, sensory sensitivities, most autistic kids (and many adults!) have trouble even recognizing what is going on with their bodies. We need to be taught how to check in with ourselves and how to self-regulate.
It doesn’t help that if we do mention that sounds/lights/smells bother us when at a low level of stress with no common stress signals that parents will notice, we’re usually written off. So we’re almost taught to ignore those signals from a very young age.
When you have alexithymia, it is easy to be seen as going from 0 to 100 with stress, even if that’s not what’s happening at all. This is because many of us don’t even realize we are under so much stress until we are at 90/100. And by then, it’s often too late to implement sensory supports or reduce demands. We need those supports before we get to that point, before we even realize we’re stressed.
Modeling Emotions/Sensory Supports
This is where you come in! You can model sensory supports around the house. For example, if your kid has auditory sensitivity and can wear headphones (some can’t due to touch sensitivity), you can buy a pair of headphones and leave them within the kid’s reach.
You can model this behavior to your kid. You can say out loud “Oh jeez, that sound from the TV is really bothering me, so I’m going to put on my headphones!” *puts on headphones* “Oh, that feels better!”
We need people to voice their emotions to help us understand ours.
The other thing you can do is validate the kid’s emotions. If they label their emotion as upset, or negative, don’t tell them to “cheer up.” Just say “I’m sorry you feel that way, that sounds frustrating/sad/upsetting/[insert emotion here].” So they know you understand and they know that it is okay for them to feel emotions.
If they have difficulty describing their feelings, don’t push them. They may not like the question “How are you?” or “How was your day?” because it often requires labeling your emotions, which they may not be able to do. If they say “I don’t know,” accept that. They really don’t know!
Instead, consider offering them a number system, such as letting them write down (or say) their stress level out of 100. It could even just be a daily journal. That way, they can choose a number instead of trying to think of words that describe their feeling. Some autistic adults also like looking at emotion wheels so they can pick a word from it, rather than coming up with it themselves. However, this may be overwhelming to some autistic people as it may give them too many choices to pick from. Personally, I prefer a number system.
Feelings, Meltdowns, and Emotional Regulation
Another way to reduce stress is to think of ways to get their energy out that they can redirect during a meltdown. Come up with a plan. Ask them when they’re calm if they want a pillow or punching bag to punch.
Ask them if they want you to prompt them before a meltdown happens, to go to their room or do X activity, so that they can get their energy out and possibly be done with their meltdown faster. Ask them if they want you to leave them alone or give them certain items such as sensory supports. You could even make a checklist of all these things to remind you what to do when they have a meltdown.
The other modeling you can do is to show them how to take deep breaths when you are angry or upset (this may not work during a meltdown, but may help with feelings of anxiety in other contexts).
And by validating their feelings, especially around sensory sensitivities, it will help them know what they need. They know that you are a safe person they can come to if they need to change their sensory environment, that they’ll be listened to. Here are some strategies I use for figuring out my own emotions.
And if you are concerned that you may be telling your child that their negative feelings are wrong, or that their sensory sensitivities aren’t real/aren’t important, here are some things to look out for and what not to say to your autistic kid.
Should I encourage my autistic kid to socialize more? Should I teach them neurotypical social skills?
There are lots of questions about whether and how autistic people should be taught about their different brain, and if they should be taught about neurotypical social skills in general.
Answer: To me, there are two different things that often get mixed up:
- Ask an autistic person to socialize in a similar way to a neurotypical person (example – always say “hi, how are you?” instead of just hi, because it’s what neurotypical people do & rude otherwise).
- Give autistic people information about how neurotypical people interact with each other (only if they are up for it and actively wanting to learn about this), and make sure they know they do not have to imitate neurotypical social skills when meeting people.
Number 1 is clearly masking, and Number 2 is very different from masking, focusing on understanding how neurotypical people interact rather than expecting the kid to conform and mask. Personally I wish I had known about NT interactions sooner, because it is overwhelming when you don’t understand neurotypical people’s dynamics while in a conversation, and can be hard to interpret. Number 1 can be harmful and push autistic people into masking more, whereas number 2 may help autistic people be less overwhelmed in social situations, even if they don’t mimic neurotypical people.
As an adult, I enjoyed reading A Field Guide to Earthlings: an autistic view of neurotypical behavior (caveat – ignore the Sex chapter). It made me feel less overwhelmed when I was in a large group of non-autistic people and trying to figure out what was going on because I had some understanding of the social dynamics.
That being said, I think it’s easy to lose yourself in placating neurotypical people’s social expectations. Our society expects NT social norms from us nearly all the time. It’s hard not to give in to make it “seem easier” if just for a few moments.
Make sure your kid knows that it is okay to have autistic body language and tone of voice. That it’s okay to be autistic. Because we don’t get that anywhere else.
The next time you think “My child should socialize more” remember that for us, socializing is a whole different playing field (and almost always on Hard Mode). Remember that masking, essentially pretending to be someone else for at least 7 hours a day, is detrimental to autistic people’s mental health, both shown by research and by experiences of autistic adults themselves.
Low Self-Esteem and Lack of Acceptance
If your kid needs reassurance that being autistic really is okay, because the messages they’ve gotten from outside your household are negative and judgmental, feel free to share these Dear Autistic Kid letters with them:
- On School and Isolation (bullying, exclusion)
- On Meltdowns and Shame
- On Being At Home (about the pandemic)
Why doesn’t my child tell me what’s wrong? They are highly verbal but won’t tell me what’s going on, and sometimes won’t even talk at all.
Answer: “Highly verbal” does not mean effortless and instant communication.
This is something that a lot of parents don’t instinctively understand – I’ve always been “highly verbal” but that doesn’t mean I have the ability to modulate my tone like NTs do.
Most of us who are “highly verbal” still can’t say what we want to say, in the time we want to say it, with the NT expression we want to portray. Usually what I speak about in a meeting is only 30% of what I wanted to say because I have to think about how NTs will react.
Being able to say lots of words and being able to say them like an NT are 2 very different things. Here’s an example of what can happen in everyday conversations.
The other thing that comes with being a “highly verbal” autistic kid is the absolute confusion on adults’ faces when I have a shutdown and can’t talk. Most adults thought I was choosing not to talk. But I literally couldn’t. And I needed prompting to move.
A shutdown is similar to a meltdown but it’s happening internally. I learned early on, especially being raised as a girl growing up, that it was more acceptable for me to shutdown (look down, cry and not talk) than it was for me to have a meltdown.
A shutdown feels like your brain is imploding. If you wonder why autistic kids hit their heads, it’s because it literally feels like your brain is on fire or it’s swelling, and the only thing that helps is trying to push it back in or distract yourself with other pain. At least, that’s how it feels for me.
It’s a physiological response that we are dealing with, not just emotion. During a shutdown I’d look down, cry, and barely move. It almost feels like sleep paralysis, which I experience quite often. I need to be prompted to leave if I’m in an area that’s noisy/crowded.
Similar to meltdowns, make a plan with your kid to figure out what they need during a shutdown. Ask them if they want you to get their sensory supports (headphones/sunglasses) during a shutdown, or ask if they want you to prompt them to go to their room or go to a particular space that’s quieter/darker.
Why does my child apologize for things out of their control? Why does my child think I am upset?
Answer: We are often told we are being rude/[insert negative judgment here] when we are not trying to be. So we overcorrect by apologizing no matter what we’re doing. And many of us pick up on emotions that neurotypical people may try to hide or not want to talk about.
This is a problem, because NTs may say the opposite of how they feel, leading us to be confused and feel like we did something wrong. We can tell you’re upset but not know why and since we can’t figure it out, we simply apologize because we think it must be our fault, especially if there’s no context and if NTs refuse to talk about it when we ask if you’re upset.
Scenario #1: Parent comes home from work, frustrated from work but doesn’t want to talk about it but the autistic kid notices the parent’s upset by something. The autistic kid wonders if it’s something they did (leaving the TV on). The parent doesn’t say anything about being upset but the kid is worried it’s their fault so they apologize hoping the parent feels better.
Scenario #2: Other people constantly judge the autistic person for their body language outside of the house, for example, at school. So when they come home they apologize for basically being themself. Parents think this is individual, low self-esteem, but it’s from what the autistic kid has learned – that by apologizing for being themself, they make everyone around them feel better.
Scenario #3: Because we have alexithymia, our own anxiety, which we don’t know about, can fuel assuming negative emotions of others. An autistic kid might ask the parent if the parent’s angry/upset often because they are anxious themself and read into the facial expression of the parent. The parent might just be concentrating on something & can be interpreted as being upset due to their face.
The Solution: Verbalize your emotions and the context behind them! Explain why your face may look a certain way – “This is the way my face looks when I’m concentrating on X task. I’m not upset, I’m actually just [insert emotion here].”
If you’re upset by something, don’t try to hide it. Instead, just let your kid know. “I know I may look upset, but that’s just because I had a frustrating day at work for X reason, it’s not because I’m mad at you. I’ll feel a lot better after I have dinner and do Y activity.”
And if your kid asks if you are upset/mad, and you are, then let them know! Just make sure to tell them it’s not about them, and make sure to explain the context around your emotion. Then they will learn that not every negative emotion you have is about them!
Let them know that it’s okay to ask if you are upset, mad, or sad. Let them know you will tell them how you feel everytime to make sure they know what’s going on.
Imagine figuring out how a brick wall “feels.” That can be how it feels when NTs expect us to read their faces. It can be impossible because oftentimes, their faces aren’t reflecting their actual emotion, but their social intentions instead. And that can be confusing and overwhelming for us.
And if you notice that they ask you if you are upset more often when they are anxious but they don’t realize it, model self-regulation: “I think I’m going to take a few deep breaths to help me calm down. Want to breathe with me?” or “Would you like to do [X calming activity] now?”
It may be that their own anxiety, plus previous experiences of how others have treated their autistic body language/tone of voice, is fueling the interpretation of negative emotions, especially when many NTs hide their own negative emotions as well.
Facial expressions in neurotypical people don’t often represent actual emotion, but instead show “intention and social goals.” This is why it can be confusing to us, as we may be able to tell someone is truly upset, but their face doesn’t match up. It’s hard to navigate the world when most neurotypical people don’t even know how to explain their own social subconscious processing in the first place. The more you narrate and model your own emotions, the easier it will be for your autistic kid to understand your emotions and theirs.
The most important thing to remember is not to lie to your kid about your emotions because that can lead to confusion & even frustration for them in trying to understand their parent’s expressions.
Make sure to give them the context they need to understand the why behind that feeling.
This is a really amazing system that this parent allowed their kid to come up with themselves using different colors of cards for communicating during times of distress and doesn’t need the use of words or speaking at all.
If you want more information about how autistic coping mechanisms for dealing with stress may differ from common neurotypical coping mechanisms, see this twitter thread.
And here is a really great thread about flat affect in autistic people, which means we have to mask our facial expressions too. This is exhausting, NTs often misinterpret our faces, and something I didn’t talk about much but has grave impacts on our mental health and relationships with non-autistics.
And lastly, here’s a thread on autistic tone of voice (often interpreted as “aggressive” or “defensive” or “rude”) and how it is often impossible for us to mask our tone of voice when stressed, especially when asking for help.