As the holiday season is coming upon us, many people think about family gatherings, travel, cooking, gift giving and relationships. Those of us connected to autism find ourselves thinking about meltdowns.
There is a lot of good advice out there that is easy to find on dealing with holidays when you have a child on the spectrum, so I do not want to be repetitive. I want to talk specifically about meltdowns because they are very common during the holidays due to disrupted schedules and routines, noisy and crowded gatherings, new foods and smells, increased communication demands, lack of structure, etc. Meltdowns are very common and are also very hard on everyone.
What is a meltdown?
All parents know what meltdown looks like for their child. We often know the triggers and the warning signs. Let’s talk briefly about something less obvious: what a meltdown is about.
Children and adults with autism, or autistics, are known to have difference in processing sensory information in seven areas. Those are tactile (touch), auditory (hearing), visual (seeing), vestibular (gravity and movement), proprioception (feedback from muscles and joints of your own body) and olfactory (smell). Everything that happens around your child, and any activity that the child is involved in, needs to be processed.
There are different statistics on percentages of children and adults with autism, or autistics, who have sensory differences. I have seen articles saying that 78% of people on the spectrum have those types of sensitivities. Based on my professional l experiences, I believe that 100% of children and adults with autism, or autistics, have these sensory processing differences.
What is important to know is that children and adults with autism, or autistics, go through their day meeting constant demands that are difficult for them to manage. And even if they look OK, they might be expending tremendous amounts of energy to cope with everyday situations that involve noise, lights, commotion, learning and behavioral demands, unpredictable changes, etc. Nothing special might be happening and child might not be showing any distress, yet there is an added workload, a hidden cost that is seen in a form of an eventual meltdown.
At some point, a child's ability to deal with whatever life threw his or her way gets exceeded, and your child loses control of his or her behavior. The frontal lobe of the brain can no longer provide emotional self-regulation needed to use the usual coping strategies and behave as expected. This process, sometimes known as “overload,” can take minutes or it can take hours. You will not necessarily know. A meltdown can happen when child is overwhelmed by something that has just happened, or it can be a release of tension and pressure that has accumulated over a period of hours or even days. We can only guess the internal processes. What we see is a meltdown. It is the only way in that moment in which child can communicate to parents and/or other caregivers, “I am struggling. I am scared. I am overwhelmed. I need help right now!” At the same time, a meltdown will prevent any additional information from being taken in.
Adults with autism, or autistics, can also have meltdowns. They look no different than meltdowns in children. Just like with children, anything can be a trigger, and there are warning signs that might allow time for prevention.
Some adults learn to use coping and self-regulation strategies and are able to manage without meltdowns. It still takes tremendous amount of energy to process all the inputs, but a person who has learned to self-monitor and self-regulate can offset this by doing things like spending time alone, spending time in silence and darkness, working out in various ways, engaging in special interests, getting necessary sensory inputs, etc. The amount of energy required for this self-regulation is tremendous, and each person's ability to manage might change significantly day to day.
Parents often tell me that their child will not have a meltdown with anyone else, only with them. They find that confusing because they feel it shows that child has control over meltdowns. This is because with other people, whom your child does not trust as much as he/she trusts you, your child is working very hard to hold it together. If your child is only having meltdowns with you, he’s basically saying, “You are the only person in the world who I feel can help me when I am completely out of control.” And no person in the world can always be under control. We all need to let go somewhere, somehow. Your child lets go with you. You might prefer not to have that privilege, but it is yours and you have no choice but to take it as the highest sign of trust your child can give you.
What to DO during meltdowns?
Meltdown is not a choice. As we have already discussed, it is the only thing your child knows to do to let you know that he/she is having an emergency. Your child cannot stop the meltdown mid-way. It has to run its course. Let it.
How you help your child during the meltdown depends on how your child responds to what you do. Learning what helps is a process of trial an error.
The first step is to ensure physical safety. If your child bangs his/her head or bites himself/herself, preventing injury is the first concern. If you can manage it yourself, great. If not, you need to have someone help you.
If your child becomes aggressive during meltdown and threatens your safety, you need to make sure that you are safe by leaving the space. If you can monitor your child from a safe distance, from another room with a door half closed or in some other way, that is ideal. But you cannot be unsafe.
Those two situations aside, you will need to see what helps your child. First thing to do is to get to your child’s level. If your child is small or if your child is on the floor, get down on the floor with him/her. For some children, you can help by hugging him or her while rocking rhythmically. For some children, imposed movement might be too much, so rocking would be out. Some children will hug facing you, and some will hug their back to you, or sideways. Whatever works. If there is a special type of touch your child enjoys, try to use it. For example, I worked with a child who adored back rubs and found them soothing. If your child has a soothing preference like that, try it.
Some children need to be in control of touch, especially when upset. In this case, you might open your arms and invite the child to you when ready. When the child is pressed against you, ask if you can wrap your arms around them and wait for a “yes”. Your child might even prefer to take your arms and wrap them around himself or herself. This lets your child control when, where and how they feel touch. Your child might pull away from touch and then get close again. Let them do what they need. Stay available.
For some children, you can add singing or humming, but for some children use of words or sounds can be too much. What songs you sing you will need to experiment with too. I have worked with a child who was sensitive to music that some tunes would make him sob uncontrollably every time. You want to sing, or perhaps, hum, a song that is soothing to your child. Humming is good because it does not require processing of words, but it allows you to use your voice to sooth.
For some children, touch during meltdown can be restrictive and unbearable. You might need to keep your distance and either sing/hum or talk to a child in a low, soothing voice. This is not the time to discuss what happened or inappropriateness of your child’s behaviors or reactions, or better ways to react. What you say is up to you, but it is anything that will sooth your child. This is not the time to teach. During meltdown, you won’t be able to reach your child with rational discussion.
Sometimes none of what’s above is acceptable for a child. Sometimes just your presence might be helpful and regulating to your child. You will have to learn for yourself the distance from you to the child that will work. If this is what you are doing, you are staying present and available until your child lets you know that you can become more involved. It could be that at some point you will have an indication that your child is ready for you to move closer and perhaps to touch or use your voice. It is also possible that your child will calm down independently, but will prefer you in the room. Take this seriously, because even though you might think that you are not doing anything, for your child your presence is comforting and communicates love and care.
Yet for other children, it is better that you leave the room. Some children are overwhelmed by someone else’s presence. If that is the case, leave the space and monitor your child in some way for signs that he/she is ready for communication. You can experiment with popping in from time to time without saying anything. Or you might find that your child becomes upset at that. It might be better to let you child find you when he or she is ready.
You want to wait until your child is completely calm and rested to talk to him/her about what happened. You will learn how long it takes for your child to be ready, and the signs of that readiness. It could take a few hours or a few days. Some children on the spectrum take very long time to fully process an emotional experience. You might find that just mentioning the situation around the meltdown to them might provoke another one. For those children, it is better to leave it alone and focus on teaching self-regulation skills.
Be the calm in the eye of the storm:
A lot is written about the need for the parent to stay calm during meltdown. It can be so very hard. Meltdowns can be brutal and draining. As much as you want to get used to them, they manage to get to you and affect you deeply every time.
You will need to figure out a way to release the tension afterwards. It should be a part of your self-care plan, which I sincerely hope you have. But during meltdown, it is imperative to stay calm. Your child will feed off of your emotions during meltdown. Your child will rely on your ability to self-regulate and stay calm in order to find his or her own calm again. If you become agitated, so will your child.
If you cannot stay calm, make sure to leave the space where your child is. If there is someone else to take your place, ask them to help. If not, provided there are not unsafe behaviors, being out of your child’s space will be better than being with him/her and adding a processing demand to what needs to be a calming situation. Don’t feel bad if you had to leave. You are a human being, and sometimes we all get to the end of our capacity to give. You will not hurt your child by leaving during meltdown occasionally. You will be there for your child next time, when you are able.
What NOT to do
Do not ignore meltdowns
There is ABA-based advice out there to ignore meltdowns. According to the ABA approach, all behavior serves one of four functions. These are: 1) attention, 2) tactile (obtaining a desired item), 3) escape (getting out of something the child doesn’t want to do), and 4) sensory (receiving sensory input). In this post, I will not go into the reasons why I think that this classification is too simplistic and its limitations need to be considered in programming and treatment planning. For the purposes of this post, I'll just say that the ABA approach recommends that whatever consequence (i.e. attention, tactile, escape, attention) child accomplishes through undesirable and maladaptive behaviors, the child should learn to accomplish through appropriate and desirable behaviors. Within ABA approach, this requires that undesirable and maladaptive behaviors are ignored. An ABA-based clinician will recommend that if your child has a meltdown, you ensure your child’s physical safety, and ignore him or her until he/she calms down.
I think that it is terrible advice. If the purpose of a meltdown is to communicate an overwhelm and complete lack of ability to calm down, the natural course of action in my world is to help your child in every way you can. It would be very confusing to a child if his/her closest adults: parents, family members, aides or teachers, were to ignore his/her cries for help. How is the child to understand this? What is the child to learn? What is the message given?
When a typical child falls down, hurts himself or herself, and cries inconsolably, we hug, check on the injury and talk to a child in soothing ways. We do not ignore the cries and expect the child to calm down on their own. Why suggest anything different for children on a spectrum? Yes, they might be older, but a meltdown indicates inability to cope. A child in a meltdown urgently needs our help.
Do not punish meltdowns
Meltdowns are very scary for a child. No one would choose to be so completely out of resources and so fully out of control. Please remember that. Your child should never, under any circumstances, be punished, scolded or given a “consequence” for having a meltdown. You cannot punish someone for an action that is an expression of his/her disability and related skill deficits.
Some of the signs that an adult with autism is about to have a meltdown can include
Anxiety as expressed by faster heart beat and breathing, pacing, and seeking reassurance by repetitive statements or questions
"Freezing" (being very still)
Stuttering and decreased ability to communicate
Loss of eye contact
Loss of ability to focus
To help an adult:
If an adult with autism, or autistic, tells you that he or she is about to have a meltdown, take it seriously. Ask how you can help. If you know how to help, follow the plan.
If you are not sure, ask if the person is about to have a meltdown and offer/provide assistance. Often, leaving whatever the space and situation triggered the meltdown will be helpful. It's important to decrease all sensory input as much as possible You have to play it by ear if you do not know what works. If the person tells you what to do because they know themselves, trust that.
One trick I have learned is that questions can be very demanding on those who have autism, or autistics. They put pressure on a person by requiring an immediate answer, without a preview or time to formulate thoughts. When a person is already overwhelmed, it can be better to use statements rather than questions. For example, "We are going to leave this room..." can be better than "Do you want to leave this room?" If the person does not want to leave, he or she can let you know.
Everything about meltdowns we have discussed above applies here. Meltdowns are real. They are awful to go through. They are not chosen. They cannot be stopped voluntarily. They are cries for help. They have to be respected.
Meltdowns in public places
These are so hard. Inevitably, there will be stares and suggestions of help from well-wishers. Do not feel like you need to be embarrassed, justify or explain your child’s behavior, or even respond in any way. Your job is to help your child the best you can. Saying politely but firmly, “I got this and I do not need any help right now, thank you very much!” or “It is better if you don’t talk to us right now, thank you!” should do the trick.
Of course, ideally you have an escape plan and can take your child to quiet spot, so you do not draw unwanted attention. This could be your car or the back of the store. If you cannot do this, you will just deal the best you can. Just remember that your only job in those moments is to focus on your own calmness and on your child's, rather than worry about the people around you. They mean well, they will go on with their lives, they will manage.
What to do to prevent meltdowns in children
When you think about reducing meltdowns, you need to think short-term and long-term.
1) Get rid of anything in your home that can trigger a meltdown
You will want to change your child’s environment, to remove issues that you know trigger meltdowns in your child. If your child melts down after he or she spends an hour doing homework, you will be making sure that a break is taken after a short period of time. If your child does not get a sense of being hungry and then melts down when starving, you will make sure to offer snacks. If your child has to be in control and make all the decisions, you will be offering choices. If your child does not deal well with schedule changes, you will make sure there are as few of those as possible. And you will remove any sensory input from your house that might be disturbing. For example, if your child is averse to vacuum cleaner noise, you will vacuum when your child isn’t home.
2) Avoid places and situations in which your child is not comfortable. For example, if you know that too much commotion triggers a meltdown, try to stay away from busy places and events. If going to a place that might trigger a meltdown is unavoidable, you can plan ahead. Take along any activities that might help your child keep calm. This about an "escape plan." Preview the trip and your plan with your child, so he or she can be prepared and feel reassured.
2) Learn the warning signs and proactively offer your child strategies and activities that will reduce information load. Some of the examples can be leaving the triggering situation, finding a quiet space, using sensory toys or equipment, offering preferred food, reducing language, etc.
3) Rethink the demands you put on your child. If your child isn’t willing to do something and you are trying to make him or her, you might see the warning signs of the meltdown. For example, if for some reason your child is refusing to wear mittens on a frigid winter day and you can see a meltdown coming on, you might want to step back. Just take the mittens with you and let your child make the decision when he or she gets cold. Making those adjustments on issues that are not critical to health and well-being is another strategy for reducing meltdowns.
4) Always acknowledge your child’s truth. I've learned this one from another veteran autism advocate. Your child sees the world from a different perspective, and it will be helpful if you acknowledge it rather than argue with it. For example, your child’s mind might be very precise, and that precision might be your child's reality. For example, if you are driving home and GPS shows that it is 14 minutes away, you might say, “We will be home in 15 minutes.” At which point your child with autism might say, “Not fifteen. Fourteen.” To you, it is all the same. To your child, there is a huge difference between what he or she sees and what you say. You can acknowledge it by saying, “You are absolutely right, it does say 14 minutes, but when people talk about time, they often round numbers up, and that is what I did. I rounded 14 up to 15.” It will much better than simply saying, "It's almost the same," because for your child it isn't the same at all, and denying his or her truth would provoke anxiety, which can also feed into meltdowns.
The long-terms strategy for reducing meltdowns is teaching skills. Your child needs to learn
To monitor own states of arousal (low, optimal, or high);
To know what sensory inputs are helpful in managing arousal levels;
To ask for those inputs and use them independently;
To monitor and recognize own emotional states;
To recognize intensity of his or her own emotions;
To communicate about own emotions;
To use coping strategies to manage own emotions;
To learn to estimate the size of a problem and choose an appropriate response;
Self-advocacy skills, which is speaking up for yourself, and making choices and decisions about oneself;
Functional communication, which are the most basic communication skills around wants and needs), for example, “I want more,” “It is too loud”, “I need a break”, “Stop”, “No.”
All these skills can be included as objectives in your child’s IEP in a way and at a level that fits with your child's abilities. These skills will need to be learned step-by-step and practiced over many years. It is important to start as early as possible and continue this work consistently. Every child’s ability to learn and progress is different. But in whatever way, at whatever level a child can learn these skills, they need to be taught.
Preventing meltdowns in adults
Everything discussed above applies to adults as well. Some adults find that over the years they are able to manage meltdowns better and have fewer of them. Yet others find that meltdowns are getting more frequent and worse. It is important to go through the steps above and learn as much as possible about oneself. Keep a log if it helps to find patterns and triggers. Try different strategies to find ones that work. Change your home to make it a welcoming place for you. Leave your home prepared. Educate your friends and family on your needs and on how they can help. Avoid places and situations that can be triggers. Mainly, do not be embarrassed by having this challenge. You cannot help it. You can only manage it the best you can and recruit others help you with it.
The emotional cost of meltdowns is so high for everyone involved, it is worth every effort to make then as infrequent as possible. Most likely, you will not be able to make meltdowns go away, but you can have many less of them.
I hope that this post will be helpful to you in helping your child or yourself have fewer meltdowns. If you want to be updated on new posts on the topics of autism parenting, autism 504's and IEPs, life with autism, special education advocacy and autism research, please sign up for updates at the top of the page. And feel free to send me your thoughts and questions.