I am sometimes asked for advice about how to help autistic children deal with major life changes. Change is difficult for most people with autism, but it is especially challenging for those who are not yet verbal or fluent with a functional communication system. A couple of examples I’ve been asked about recently: an eight-year-old girl who is living with early onset of puberty, and a girl whose family welcomed a new baby. In each case, the girl reacted with behavior regressions and outbursts that have been hard and exhausting for the whole family.
Remember, it is to be expected that children will regress when there is a major life change. A new baby in the house is a huge change! Experiencing all the hormone changes of puberty with little or no understanding of what is going on with her body is another huge change. Parents can read Social Stories© about growing up and body changing, and provide special “period panties” so a little girl doesn’t have to navigate sanitary napkins, but all the physical changes are bound to be confusing and distressing.
We understand why these girls are acting out, but understanding is of little consolation when the whole family is in an upheaval at the effect of a child’s outbursts. We need to find ways for the child to feel better, safer, and more comfortable, so that they can calm down. It’s not easy, but it’s important to keep your eye on the goal. We want to help her feel safe and comfortable so she can manage her behavior. This is not about forcing her to change her behavior so that everyone else feels safe and comfortable. It’s an important distinction.
This is equally true whether we’re talking about the girl who is going through early onset puberty, without understanding what’s going on with her body, or the girl who has and unexpectedly (for her) been replaced as the baby in the family, without really understanding why. In either case, we need to start where she is, not where we wish her to be.
The first step is always to bring the child’s support team on board. Many wise, experienced professionals and perspectives looking at the same problem from different angles can find creative solutions together.
A speech-language pathologist can work on increasing functional communication, giving her ways to express her negative or angry statements. If her only communication tools are positive, polite phrases, she may turn to nonverbal behaviors to express her big emotions. Being heard and understood is important, even if what she is expressing is outrage at something that can’t be changed.
An occupational therapist can provide ideas about a sensory diet, things that may help her to calm down when she’s upset. Depending on what kinds of sensory experiences she craves and what she finds aversive, you can create sensory experiences that she enjoys. If she spends a few hours running her hands through a tub of lentils in the back yard, and she feels better and calmer afterwards, that sounds like an afternoon well spent.
A behavior professional can conduct a functional assessment, to find out what the function of the behavior is, and from there, to find more adaptive and effective ways for her to get her needs met. This is not a plan for the purpose of making life easier for mom and dad, (although we hope that happens, too.) Rather, it is to learn what function her behavior serves for her, and to help her get what she needs more easily. Is she screaming to ask for attention from her parents? Then what she needs is attention from her parents. If she can learn to request that attention by handing them a picture icon card, or by signing “love,” and parents give her attention as soon as she gives this signal, then the need for screaming is eliminated. Screaming is difficult work, exhausting, and hard on the throat. Once she learns that she can get her needs met without screaming, her life (and yours!) will be better. Eventually she can learn to wait for attention later, maybe by handing her a “WAIT” card to hold until you can put the baby down or get off of your Zoom meeting. Yes, she may have already learned the “WAIT” lesson in the past, but now that everything is different in her life, and she may have forgotten some things that had been part of her repertoire.
In addition to giving her the communication she needs to get her needs met, and calming activities to help her deal with her big feels, it can often be helpful to pre-plan to get her needs met, before her feelings get out of control. Before she is desperate for attention, give her a lot of quality attention without her needing to ask for it. This is where family members, friends, and support team members can help. If there is a new baby in the family, or if parents need to work, look for creative ways to share the attention load. Maybe one parent can start the day caring for the baby while the other parent gives big sister undivided attention, doing something she loves to do. Take turns if there are two parents in the household. Maybe a grandparent can come in to spend time with the baby, allowing mom or dad another opportunity to give positive attention. As much as possible, provide attention that she does not need to ask for or work for, just because you love her, in addition to responding when she does ask. Schedule just-for-fun times for attention on her calendar or daily schedule, so she can see it is there and look forward to it.
While waiting for your child’s team to meet, explore the function of her behavior, and propose solutions, put on your own Sherlock Holmes cap. You know your daughter better than anyone. What does she need? To know that you love her unconditionally no matter what? What helps her feel better? Special time with you? Time alone with a sensory activity and no demands? Spending more time than usual swinging, or watching her favorite cartoon again and again, or being outdoors, or a big bear hug and a cuddle under her cozy weighted blanket?
Experiment from the point of view of what will make her feel happy, safe, and comfortable, rather than thinking about what you want her to do. It’s not easy being autistic, nonverbal, and having your world turned upside down, in unusually stressful circumstances outside of past experience or understanding.
Be patient with her right now. She’s doing the best she can, and she needs to know that she is loved and will be cared for, no matter what.
