© The Mighty
Mother holding crying child.
Do you know how to manage autism meltdowns?
If you are parenting an autistic child, you are likely witnessing some extreme moods. In the autism community, a critical mass of these extreme moods is often referred to as a meltdown. A meltdown is much different from a tantrum – and therefore needs to be managed differently as well.
If you take your child out in public (and you will, again, post-quarantine!), then you may have experienced the side-eye and under-the-breath comments that passers-by tend to dole out. While these comments are beginning to dwindle as our society becomes more and more understanding of neurodiversity, many people will continue to judge your parenting. These are challenging moments as a parent. But as Naoki Higashida reminds us in his first-person account of autism, “The Reason I Jump,” if you think it is hard to witness, it is many times more difficult to live it. So here are some factors to consider when trying to figure out how to manage autism meltdowns:
Or more specifically lack of sleep used to be the number one cause of meltdowns in our house. You may already be aware of this connection, but what steps have you taken to address it? Here are some sleep tips you can consider to help you manage this single aspect of life that has such a ripple effect through the entire family.
Because we have worked so diligently to address the sleep issue, sensory dysregulation has now emerged as the most-likely culprit when Mr. D’s mood descends. Regular physical exertion is key – it is why we use a wide array of “tools” to help manage his “sensory bank.” Between quarantine, heat waves and wildfire smoke, this year has been extra-challenging, so we have had to be extra creative. He showers in each shower in the house. We roll him up in a blanket like a burrito. We drive him around listening to music.
Video: Facts over fear: What you need to know about young adults and Covid risk (NBC News)
An extension of the sensory aspect, pay attention to what is going on in the environment that could be causing an extreme reaction. It could be the obvious – a loud noise such as a garbage truck or a tree being removed. It could also be something less apparent to neurotypical individuals, such as a faintly ticking clock, an extremely high ceiling or even a bird chirping. While you can’t always immediately change your location, just being aware of any environmental triggers can help you plan accordingly.
If your child is verbal, then it is likely that they can share their preferences about being alone or with others, or at least their preference for certain company over others. But they may not be able to voice those preferences clearly. Non-verbal individuals may struggle even more mightily with this. We definitely see extreme reactions from Mr. D in situations involving new people (a much less prevalent issue during quarantine!). If we have a family obligation to attend a gathering with many new faces, we are sure to plan an “escape route” by taking multiple vehicles or scouting out ways for him to take a break. For us, a simple, portable way to do this is simply to retreat to our car. Though we purchased our minivan before he was diagnosed, we chose one with a DVD player. We continue to be thankful for that decision that younger-us made.
You are probably acutely aware of any plants or trees that cause you to have seasonal allergies, but you may be less aware of what is affecting your child. Mr. D, it seems, has acquired both “sets” of seasonal allergies. If either of us is struggling with watery eyes, sneezing or other allergic symptoms, we know to double-check his allergy medicines and consider other interventions. A shower to rinse off pollen can be helpful, as well as going for a drive – with the windows up, of course.
For reasons that are only partially clear to medical experts, there is often a higher incidence of gastrointestinal issues among autistic individuals than in the larger population. These issues can vary, but may include issues with food textures or tastes, sensitivities to any number of food categories (dairy, gluten, soy, sugar to name a few), or other, often hard-to-trace instances of diarrhea, constipation and/or acid reflux.
I can’t even count how many visits to urgent care we made before we figured out that extreme constipation was an issue for Mr. D. After a lot of trial and error, we removed dairy from his diet, and used Miralax to stabilize his GI system. Now, years later, regular probiotic use (and still almost no dairy), have reduced this type of meltdown almost entirely.
The idea that parent or caregiver self-care can impact your child is one that may take some time to come around to. Parent self-care is part of how to manage autism meltdowns? I admit that I was skeptical when I first heard Linda Lotspeich speak on the topic several years ago at the Stanford Autism Center’s annual conference (where I am a volunteer member on the Parent Advisory Board). Certainly, I thought, the mindfulness and other aspects of self-care she was recommending were for the autistic individuals themselves, not the parents? But in fact, though she continues to work toward published research on the topic, the anecdotal evidence becomes increasingly clear with each and every cohort of her mindfulness program. And because seemingly everything is virtual now, you can participate from basically anywhere, time differences notwithstanding.
If this program is not a fit for you, then simply the awareness that your personal well-being and your own self-regulation has an impact on your child is important to focus on. It is for this reason that quality of life for families of children with autism is at the forefront of nearly everything I do. Our family life is rarely punctuated by the acute medical events that mark other disability communities. There aren’t surgeries to prep for, treatment phases to plan around, or extensive medical equipment to acquire (unless a trampoline counts as medical equipment). Autism often involves a slow march of moments – often with extreme daily – or even hourly – highs and lows.
This slow march can mask growth and progress, but if you take “snapshots” – like comparing annual IEPs or ABA evaluations – you may be surprised at what is transforming right under your nose. Managing meltdowns is part of the marathon — living with autism is decisively not a “sprint! But learning how to manage autism meltdowns while also improving your own quality of life is as close to winning a marathon as you might get. And that’s a win I’ll take.