We have a very generous village. When our oldest son was diagnosed with high-functioning autism a little over a year ago, the people in our life surrounded us with support. The week we got our diagnosis, our daycare provider sent home a care package. A distant cousin drove several miles to meet me for coffee so that she could listen to my concerns in person. And my parents and in-laws issued a standing offer to watch the kids on some weekends (sleepovers, even!) so that my husband and I can take breaks. Yes, we are very fortunate and so thankful.
Yet, somehow, even while I have come to rely on others’ help and greatly appreciate it, I am often baffled when my generous villagers ask the simple question: “How may I help?” The question is such a thoughtful gesture, and of course, it is the case that we like the support, but I have only been able to stumble in response. The truth is that the answer I would like to give is often too complicated or too unexpected to give without some forethought.
So, here, finally, is my attempt to provide the answer I wish I could have given many times before. My guess is that other families affected by autism spectrum disorder (ASD) have wanted to make similar requests of their own fellow villagers but they, like me, may also have a hard time articulating these more nuanced needs on the spot. Here are the top six answers that I have wanted to give my village when they ask that great question.
1. Don’t be hurt by our absence
One of the best ways to help us—and one of the hardest to explain—involves not doing something. That is, please do not be hurt if we have to turn down a social event or gathering. Perhaps I can best prevent your hurt feelings, dear villager, by explaining how our limits are real and our absence is nothing personal.
When our son is doing well, he can handle about one event every weekend. When it has been a difficult season in his life, it has been even less. And, some special exceptions aside, we usually have to avoid social engagements during the school week so our son can be relaxed enough to learn in school the next day and benefit from therapy during the week.
Other ASD families we know have similar limits on social events. Like many ASD children, our son needs his quiet time—or “self-regulation time” as it is called in the therapy world—to face the stressors and caprice of ordinary life. Without it, he has a hard time functioning. If we do something as simple as squeeze in an extra play date on a Saturday afternoon when he needs time to soothe himself with a solitary routine, we can see a major regression in his behavior. Our absence from many events is often necessary to make sure our son has the best arrangement to help him thrive.
Our limits on social events are also real because of the time and energy we need to spend preparing for them. Autistic children are often rigid about schedules and routines, and for many of them, transitions are especially difficult—from playtime to breakfast, from breakfast to the car, from the car to the school, etc.
It is often a full-time job coaching our son through a regular morning routine. And if the day does not follow a normal routine, it takes an even greater effort. We usually need to create a visual schedule and prepare our son beforehand if we break from the expected agenda. And if the day includes an entirely new event—like a roller skating birthday party—we create a social story for him the week before and read it to him throughout the week to help him prepare for the simple social cues the rest of us take for granted: e.g., “When I go to this birthday party, I will wait at the counter to get my roller skates.
If I am nervous about putting them on, I can ask an adult for help. There may be music at this event. If it is too loud, I can cover my ears or take deep breaths to relax.” The detailed preparations necessary for a simple event are often unfathomable to parents of neurotypical children. To understand our limits, it is important to appreciate the preparations we must undergo to participate in any single event.
Our parental energy level may also set a limit on our socializing. Not only are there these many preparations before an event, but we also need to be ready to coach our child through the event and handle any meltdowns that may confront us. Meltdowns are common in autistic children and are more difficult to handle than a typical temper tantrum.
When our son goes into meltdown mode, it can require an all-hands-on-deck operation from the adults present in order to keep everyone safe and talk him down. When deciding if we should accept an invitation, we also need to weigh whether we have the energy to address his needs during the event as well. Yes, we parents have real limits, too.
I suppose what I have often wanted to say is that get-out-of-jail-free cards for social engagements, given with a smile and with no offense or hurt feelings, are the best gift—please give them generously. It is hard enough that we are so limited, but it is even harder when we feel as though we are disappointing or hurting the people we love when we are giving our son what he needs.
2. Know that we would like to do more with you
There are two sides of the coin when it comes to our limited socializing. Please know that we would love to see you. We wish we had the time to show you how much we care about you. And we dream about being able to do the things your family is able to do. Any sympathy or you can give us when it comes to this limitation is a wonderful gift. Please do not forget about us, and please keep asking to see us.
3. Give us a pass on some social responsibilities
We ASD families do not just need understanding about missed or cancelled events, but also understanding when we simply cannot live up to the same social expectations as families without special needs children. I have often felt terrible that I am the friend who does not call another friend on her birthday.
Or the cousin who does not send a card when there is a new a baby in the family. Or the parent who does not volunteer at the school carnival. Our special needs child can have needs that arise unexpectedly and require my absolute attention for a day—or a phase in life—without warning. Please understand, that sometimes I will have to cancel more than just outings. I may have to neglect some of the normal ways people show each other that they care. And this is a hard thing because I do care.
When our third child was born, and despite our protestations that it was not necessary, a friend of ours whose son had recently been diagnosed with ASD offered to stop by and drop off a meal. A few hours before the planned drop-off she texted, obviously troubled at the thought of cancelling last-minute, that it was too difficult for her to get out that day.
Her son was cycling through meltdowns all morning and she was needed at home. I tried to explain as best as I could that we absolutely had no hurt feelings about the cancellation and no expectation about her bringing a meal. In fact, the best gift and show of support we could give her as an ASD mom was a generous, “No problem. Please do not worry about it. We know you care. We completely understand.” And mean it—and then make sure she knew we meant it.
4. Support our parenting
Teaching and disciplining a child with ASD has its particular challenges, and we often have to become amateur behavioral psychologists to learn the best approaches. My husband and I had to learn, for example, that negative consequences for bad behavior can increase that behavior in autistic children.
Our best strategy for discipline is to reward good behavior or to redirect our son whenever possible. This often causes us to appear lax when our son is misbehaving, but please know that we are applying the best parenting techniques we know how. Rather than criticism or advice, offer us encouragement as we work through meltdowns or difficult behaviors. Trust the expertise we have garnered from our time in the trenches.
Another way to support our parenting is to help us feel welcome in public. Between our son’s meltdowns and delayed social skills and the fact that we do not use traditional discipline, it is easy for an outsider to judge our parenting. It is often the case that at the very moment I am addressing a meltdown—applying techniques we learned in therapy, straining to keep my cool, and assisting my other children with my spare hand—I am also battling the feeling that those around me are critically shaking their heads.
So, please, if you are able, help us ward off any public judgement that comes our way—whether it is a reproachful comment or even a narrowed glance. Publicly recognize our heroic parenting whenever possible, and educate those around you to help the autism community feel supported.
5. Trust our diagnosis
Although this is a rare thing for us, and perhaps only something families with a high-functioning child must address, it is one of the hardest to handle, so I must mention it. When our child is doing well, we occasionally have people doubt our diagnosis. These people are perhaps at the periphery at our village and have not seen our struggles or heard our story. “High-functioning autism. Sure. Everyone seems to have a problem now.” I myself am often skeptical of the many diagnoses our society is distributing to young children at an increasing rate.
I am also not in favor of cultivating a therapeutic mentality—where everyone seems to have a problem which must be handled by modern medicine or modern psychology. And I also recognize the risk of putting a “label” on a young person which might stunt their growth into adulthood or unjustly soften expectations for them. But, please, please, understand that I weighed all of this before accepting our son’s diagnosis, and I still accept it wholeheartedly. I have wanted to tell the doubters that our diagnosis is not an easy way out of a difficult parenting situation. Instead, in accepting the diagnosis I have committed to some huge sacrifices—financial and personal.
I quit a career I loved so that I could drive our child to appointments and apply therapy techniques at home, and we continue to pay out-of-pocket for both in-home therapy and on-site therapy. Unlike many other diagnoses, there is no pill or easy regimen to fix the difficulties related to ASD. If you do find yourself doubting, please ask us more about it. We would be happy to teach you what we know about autism and tell you the many ways our life is affected by it.
6. Help us with our aspirations
Clearly, family life with an autistic child has added challenges. After becoming parents, many moms and dads of neurotypical children report feeling isolated or unable to get out and do the things they once loved. This feeling can be magnified for those parents who have a special needs child. Anything other people can do to support us in the things we dreamed of doing before the diagnosis is such a gift. Did we want to plant a big vegetable garden? Start our own photography business? Write a book? Simple encouragement can go a long way for parents who are weary or discouraged.
Please assume that we still have our own hopes and interests and speak to us about them. Grant us the dignity of having our own goals and encourage us in our pursuit of them. And if you have a little extra time or inspiration, lend us a hand in actually accomplishing those things we love to do. Offer to dig out the sod for that friend who wanted a garden. Hire that aspiring photographer to take your next family portrait.
Ask if you can pick up resources from the library for the budding author. Even if the dream is never completely accomplished, granting ASD parents support as they try to use their talents is an acknowledgment of the sacrifices they have made. It can be a refreshing and humanizing gesture towards those who feel as though life has been overshadowed by the diagnosis.
Of course, for parents of a special needs child, there are always the expected and easy-to-explain requests that arise, too. Could you watch the kids so that we can have a date night? Could you pray for us? Could you pick up the drinks for the birthday party? But I have found myself more often needing support in these less expected ways. We are so thankful for you, dear villagers, and so thankful for the great question “How may I help?” Please ask it and ask it often—and please do not be surprised if you get an answer that is not what you would expect.
L.M. Leonard is a former teacher who writes from her home in Minnesota. She has three adventurous and beautiful boys, the oldest of whom has autism. She spends her time chasing children, saving the family library from utter destruction, and writing during the few quiet moments of the day.
This article was featured in Issue 71 – Navigating A New Year