Grandparents’ Guide to Stimming and How We Can Be Helpful

Stimming, or “self-stimulatory behavior”: it’s simply the word used to identify a lot of the repetitive behaviors that most of us do – and that are usually more pronounced and prevalent in persons on the autism spectrum.

In the general population, our stimming-type behaviors include things such as tapping our fingers, biting our nails, clicking pens, jiggling our feet, etc. Among persons with autism, common stimming behaviors include, but are not limited to, rocking, flapping hands and fingers, bouncing, twirling, walking on tiptoes, jumping, repetitive blinking, continual rubbing of the skin, staring at rotating objects such as ceiling fans, turning lights on and off, etc.

It is helpful if we autism grandparents are aware of three basic things about stimming:

1. Stimming is not something that should be stopped unless it’s physically harmful (biting, kicking, head-banging, etc.). Stimming is often beneficial, and causing it to stop can be detrimental. And a stimming session can last from a few minutes to a few hours. Of course if stimming is a major disruption for specific situation, it may be appropriate to remove the stimmer from the situation.
   

2. Occasionally stimming can be an indication of medical problems, and it is always and continually appropriate to have regular medical evaluations. For example, stimming may be a reaction to a toothache or stomach ache. Or it may relate to something more complex such as epilepsy.

3. It isn’t possible to predict, as our grandchild gets older, whether stimming will increase, decrease, or eventually stop.

We grandparents can make use of this basic information when our grandchildren are in our care, and we can help educate our grandchild’s family. Sometimes immediate family members of persons on the autism spectrum are so occupied with basic caretaking that they simply don’t have time to do continual learning about autism. Often we grandparents have an availability of time to learn, and providing that knowledge to our grandchild’s parents and siblings is a great way for us to be of service.

The current opinion of many autism professionals is that stimming provides a variety of benefits: it feels good, it calms anxiety, it helps focus attention, it helps alleviate sensory overload and emotional stress, it helps express frustration, etc.

In previous years various extreme therapies were used to try to cause stimming to cease – therapies such as shock treatments, corporal punishment, and drugs. But today it is generally agreed that there is no reliable treatment or therapy that will have the singular result of stopping stimming.

However . . . there are ways to sometimes lessen the intensity and frequency of stimming. But this requires a lot of observation and documentation, and sometimes we grandparents are better situated to do this than are our grandchild’s parents. It’s a three-step process.

First we need to keep a log of when/where the stimming happens, including its duration and intensity and whether there is some sort of situational shift that coincides with the stimming’s cessation. This log may provide us with an idea of what conditions enable stimming to thrive. For example, does it happen mostly when there is more than one source of noise, or when it is nearing time for the next meal, or when a specific television show is on, or when there are two or more persons in the room, etc., etc., etc.

Second, but only if we are able to gain some prospective theories from our log, we can try to determine what emotions or stimuli are prevalent when the stimming starts. For example, if it occurs mostly when there is an overload of sounds, we may want to assume that stimming is a way of dealing with auditory overload and thus put in place things to lessen the frequency and intensity of such overloads. Or if it occurs mostly when it’s nearing time for a favorite activity, we may want to praise the stimming and offer a substitute for the stimming – such as offering a squeeze-toy to someone who flaps his hands.

Third, if the previous two steps are successful, we can do a deeper evaluation of our log, consider additional theories, and offer a variety of things to substitute for the stimming.

There is one thing to be aware of: when the act of stimming produces some sort of result that is considered positive (the television is turned off, the person gets a hug, you leave the store, etc.), it is likely that stimming will be continually used to produce that result.

But the bottom line is that all of this takes a generous amount of time and thought. And in most cases, stimming is beneficial rather than harmful.

There is another thing about stimming that is especially worrisome to autism families: social isolation and bullying. Stimming can make it harder to attract friends and playmates, and can cause unfair and inaccurate judgments. We grandparents can be proactive by explaining stimming to persons with whom our grandchild spends time and socializes – including our grandchild’s immediate family. Our message is straightforward and has three parts. First, those repetitive things are called stimming and it’s common in persons with autism. Second, all of us stim; for example, I jiggle my foot while I’m eating, and I bet you can think of stimming things that you do. And third, stimming isn’t an indication of whether we’re smart, whether we’re a good person, or whether we like to have friends; stimming is just something that happens and it’s more prevalent in persons with autism.

There is one other way that we grandparents can possibly be helpful regarding stimming. Some research has shown that regular physical exercise is accompanied by a lessening of stimming. So we can consider whether our caretaking activities can include exercise.

Stimming is one of the hallmark signs of autism, and we grandparents can be knowledgeable.

Aggressive Behavior in Our Grandchildren

A 2010 survey of 1,380 children with autism, conducted by Stephen M. Kanne and Micah O. Mazurek, found that 68% displayed aggressive behavior with their caregivers and 49% with non-caregivers. Other studies have shown lower percentages. But the bottom line is that aggressive behavior is common among children with autism, and it can be bad: biting, kicking, breaking things, head banging, and on and on.

What are the responsibilities of us autism grandparents regarding aggressive behaviors of our grandchildren? Can we be helpful? Can we do things that can lessen the aggressive behaviors?

The answers of course depend on our relationships with our grandchildren’s parents or guardians. But regardless of those relationships, we can and should learn some of the fundamentals about aggression among children with autism. In many cases we grandparents, because we’re often not as emotionally stressed and involved as are our grandchild’s parents, can have a more objective view of, and can provide more helpful activities for, our grandchild’s aggressive behavior.

Following are 10 things that can be helpful to grandparents.

1. It is important for us to know that our grandchild’s aggressive behavior is usually an attempt to communicate. Our grandchild is trying to tell us something, trying to get us to understand something. She is either nonverbal and thus unable to talk, or if verbal, she doesn’t know how to explain it in words.
   

2. When our grandchild is in our care, we can conduct an “assessment” of the aggressive behavior. Assessment is most helpful when it is accomplished in careful detail. This means documenting each aggressive behavior, documenting when each episode begins and ends, determining what was happening just before and just after (location, persons present, environmental happenings, etc.), and what happened to apparently cause it to stop. It also includes documenting what YOUR actions were before, during, and after. We can keep a “diary” over a long period of time (a week or two for frequent aggressive behavior, a month or two if it’s infrequent). And, if possible, video the aggressive behavior as often as you can. Assessment also includes determining times/locations/happenings when aggressive behavior almost never happens!
   

3. Grandparents can help determine what things “trigger” our grandchildren’s aggressive behaviors. This determination can be confirmed by an analysis of our multi-week assessment. Did aggressive behavior usually occur when there was a change from one activity to another? When we tried to hug our grandchild? When the television was turned on or off? Any of a zillion things can trigger aggressive behavior. It can be as seemingly simple as irritation from a scratchy label in an article of clothing, or as vague as a weather condition. Again, a careful assessment can often help determine the triggers.

4. Because we grandparents are often not as emotionally involved (both positively and negatively) with our grandchildren as are their parents, we are often better equipped to “handle” aggressive behaviors. We can remember to do the five main things that are most important during aggressive behaviors: stay calm (don’t rush around, don’t raise our voices, etc.), say as few words as possible (“Sit.” rather than, “Thomas, come over here right now and sit yourself down!”), move to a safer and quieter place if possible (no shelves to knock over, no crowds of people), perform physical restraint only if absolutely necessary (physical restraint can be harmful to you and your grandchild and it can increase anxiety and make everything worse), and give praise or positive reinforcement when the behavior ends.

5. We grandparents can help determine – by analyzing our assessment – what our grandchild “gets” when he discontinues the aggressive behavior. Does he get to continue doing something that he enjoys (TV show, favorite food, etc.) that had to be stopped? Does he get to leave a stressful location or situation (leave the grocery store, leave the park, leave the kitchen, stop a learning or therapy session)? Obviously if his aggressive behavior results in something he wants, he will do it again.

6. After we are equipped with our “assessment,” we can try to shape our grandchildren’s aggressive behavior towards positive future behaviors by doing a few things when they are in our care. We can express praise when our grandchild responds to a normal “trigger” with NON-aggressive behavior. And, as much as possible, we can ignore aggressive behavior by not “giving in.” (Not turning the television back on, not giving another piece of favorite candy, not leaving the store, etc.) Every time we “give in” to aggressive behavior it provides reinforcement that our grandchild can use aggressive behavior to get the same result.

7. Accompanying item SIX above is our ability to help our grandchildren prepare for things that normally trigger his aggressive behavior. For example, if turning off the television is a trigger, we can give him an advance heads-up: “In 5 minutes we will turn off the television. In 4 more minutes. Only 3 minutes left . . .” A visible timer – such as many cell phones offer – can be a visible notice of the time limit and countdown. And/or we can show him advance photos or picture boards that demonstrate the “trigger” that is forthcoming: a photo of him brushing his teeth, a photo of food being served, etc. We can understand that sudden and/or unexpected events and people and changes in schedule, etc. can trigger aggressive behavior. And we can be receptive to, and provide choices. For example, rather than saying you must eat your broccoli, we can offer a choice between three vegetables. Or telling him he must prepare for bedtime in a certain order – use the toilet, wash hands, wash face, brush teeth – we can allow our grandchild to choose his own order.

8. We grandparents can be understanding of, and attentive to, the fact that aggressive behavior can be the result of any of a number of medical conditions: as straightforward as a tooth that hurts, and as complex as epilepsy; that medication is indeed effective for some persons who exhibit aggressive behavior; and that although many types of therapies are offered, ABA therapy has been widely proven to be the most helpful therapy in most cases. And we can be champions for the fact that medical assessment should be ONgoing, and that it shouldn’t stop after one physician gives a clean bill of medical health.

9. What about teenagers and/or young adults? We grandparents have more experience in long-term scenarios than do the parents of our grandchildren, and thus we can better understand that it’s NEVER too late to start giving attention to alleviating the aggressive behaviors of our grandchildren. We can understand the value of celebrating the tiniest of positive steps and accomplishments, and can realize the importance of looking at longer-term goals rather than short ones: for example, By six months from now we will have identified the most significant triggers for the aggressive behaviors. Etc.

10. Regarding aggressive behavior (as with most else in autism), praise and positivity rules! One autism professional recommends at least 8 praises for every 1 negative comment. So for every time I tell my granddaughter “Stop that!” I need to praise her 8 times for other things. Every time I catch her doing something good, I need to smile and clap and hug her. Every time she makes it through having to turn off “Paw Patrol” on television without being upset I can praise her for it. Every time she brushes her teeth all by herself I can praise her. Every time she sits attentively while I read a sentence in a book to her while I point at the words I can praise her for doing so for that one sentence. Generally our grandchildren on the autism spectrum progress much better when being reinforced with praise than by scolding, etc.

Autism Grandparents and Advocacy

“Can’t you control your grandchild?” It’s common for us autism grandparents to hear such comments and receive strange looks when we take our grandchildren to public places. Rather than viewing these situations as things to escape and avoid, we can view them as opportunities to be advocates for our grandchildren.

Advocacy is absolutely necessary for autism families, and is applicable for lots and lots of situations and opportunities.

Advocacy simply means to get another person to understand your point of view and to then agree with it and accommodate it. Our grandchildren with autism are usually unable to do this for themselves, and we grandparents can embrace the responsibility of doing it on their behalf.

Following are five specific areas of advocacy that are appropriate for autism grandparents.

IMMEDIATE FAMILY

“Immediate family” includes our spouse and our grandchild’s family. If we spend time helping to care for our grandchild, we can and should tell our grandchild’s parents what we observe and about the needs that we perceive. This can be as simple as, “When he spends the night with us, he sleeps so much better when we turn on the little nightlight.” Or, “When we go to the park, we take a ball and he loves to continually kick it around the field.” By saying these things you are of course advocating for your grandchild.

Or your advocacy within your immediate family can relate to challenging issues, such as, “I understand why she is taking the daily medicine to help with her emotional difficulties, but I wonder whether her medical team would consider trying a series of stepped-down doses?” Or “I realize the importance of the regimented procedures to help her eating disorders, but something she does at meals has caused me to try something new at our house that seems to work well.”

But we grandparents must tread lightly and carefully when advocating within our immediate family. We need to be aware that emotions are often involved. Empathy is usually our best response to emotion. Being argumentative is counterproductive to our efforts for advocacy.

If our grandchild with autism has siblings, we grandparents can be wonderful ongoing advocates when we talk with them: “You know, your brother has autism and that’s why he . . .” “Your parents love you just as much as your brother, but because he has autism he requires more of their time and attention.” We grandparents can explain things to those siblings in a manner that they can’t get from their parents.

EXTENDED FAMILY

We grandparents are often the persons who are best positioned to tell our extended family – our other children and their families, appropriate cousins and nephews, etc. – about our grandchild who has autism. We should never simply assume that extended families “understand.” They probably don’t. We can take the responsibility of preparing the extended family for holiday gatherings and reunions, and for telling them how to relate to, and what to expect from, our grandchild. This information and guidance has a special sort of resonance when it comes from us grandparents. Again, we should never assume that extended family members “understand.”

OUR FRIENDS

We can and should talk about our grandchild and his needs and mannerisms to our close friends, to persons with whom we confide and socialize. There are three reasons for this. First, it educates them and broadens their understanding of the diversity of the greater community. Second, it gives them an understanding of our grandchild and prepares them for encounters with him. And third, it gives them a better understanding of our personal priorities and challenges. And, just like with extended family, we shouldn’t just assume that our close friends already understand. They don’t. We need to speak up. They will appreciate it and give great value to what we tell them.

PUBLIC PLACES

It’s normal for us autism grandparents to be anxious about exposing our grandchild to the general public: parks and stores and public transportation and all sorts of errands and meetings. But every encounter with the public is a potential opportunity for our advocacy – for us to educate someone about autism and our grandchild. It’s normal for us to avoid such opportunities, but it’s better for us to embrace them. Almost always, when folks understand a challenging situation they are happy to help. It can be as straightforward as, “My grandchild isn’t misbehaving, he has autism. His brain is wired differently and he has trouble doing . . . I wonder if you could help me by . . .” When persons hear advocacy explanations from grandparents, they are especially receptive and understanding.

The key to good advocacy with the general public is to plan in advance. What might your grandchild do that will cause the need for your advocacy? A meltdown? An encounter with another child? Something dangerous? No matter how “good” your grandchild usually is in public, things that require your advocacy will occasionally happen, and you should plan for it. What will you say/do if your grandchild hits another child? What will your procedure be if there is a meltdown in a retail establishment? Every person with autism is different, so your responsibility is to anticipate and plan for how you can and will practice public advocacy for your specific grandchild. And it’s so much better to say something rather than to simply exit the situation without saying anything. Folks appreciate being able to understand.

YOUR GRANDCHILD

Persons with autism benefit greatly by being able to advocate for themselves. If you spend time with your grandchild, you can help her with self-advocacy. It can be as fundamental as helping your non-verbal grandchild learn to point at the thing she wants or needs. Or it can be as sophisticated as helping your high-functioning grandchild know how to best explain to his teacher that he can benefit from receiving a more advance level of assignments. Each time we grandparents have the responsibility of baby-sitting or caring for our grandchildren we can look for opportunities to help them with self-advocacy.

RESOURCES – Although not targeted for grandparents specifically, Autism Speaks has developed a comprehensive “Advocacy Tool Kit” that can be downloaded free from their website: https://www.autismspeaks.org/sites/default/files/2018-08/Advocacy%20Tool%20Kit.pdf You may want to tell your grandchild’s parents about the Tool Kit, because it includes a lot of extremely important guidance regarding advocacy related to legal, educational, medical, financial, and therapeutic purposes.