“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” 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.
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.”
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.
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.
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.