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When Should Grandparents Say the Label?

Last week at the playground my 5-year-old granddaughter, Angelina, was playing with another little girl and the girl’s mother and I started talking. She asked me where Angelina goes to school. I told her and she said she wasn’t familiar with the Faison Center. I told her that it’s for persons with autism and Angelina is on the autism spectrum. The mother’s response was, “I bet Angelina is really good in math.” I said no, but she has lots of other good qualities.

When is it appropriate for us to tell another person that our grandchild is on the autism spectrum?

My wife, JC, is a university faculty member and occasionally a new student will bring her a letter from the school administration that describes the student’s learning disability and asks for special accommodations from JC – for example, the student’s need to sometimes have an assignment explained in person rather than just in writing. JC has never seen the word “autism” in any of these letters.

Who needs to know that our grandchild has autism? When is it helpful? When can it be counterproductive? What are our roles as grandparents?

It was in 2013 that the American Psychiatric Association established “Autism Spectrum Disorder” as an umbrella term to encompass a vast range of characteristics without the implication of a single rigid subgroup. And even though today, in 2021, almost everyone has heard of autism, it is common for the general public to associate the word “autism” with a single stereotype that is based on the latest movie or book or television show that features someone with autism. The general public doesn’t have an appreciation for the sentence, “Meet one person with autism and you’ve met one person with autism.”

Thus, when you tell someone that your grandchild has autism, there is no way to know how that person will process that information.

Following are ten things that can help us grandparents deal with “whom to tell and when.”

  1. Dr. Temple Grandin says that throughout her life she has, when necessary, told others about the challenges rather than the diagnosis: “I can accomplish that task better if it is written down in precise steps.” Or, if our grandchild has a meltdown at the store, “He sometimes has overwhelming sensory issues when there are a lot of people . . .”

  2. The terms that are meant to describe levels of autism, such as “high-functioning,” can create inaccurate assumptions. Even if our grandchild has an exceptionally high IQ, she still has significant challenges with certain everyday skills.

  3. We grandparents who participate in caretaking for our grandchildren, including in public places, have encountered others who mistake our grandchild’s behavior for poor discipline. If there is a need for us to respond, it’s best for us to be positive – “He can sometimes become intensely fixated on things, and we’re proud of him for how hard he’s been working on lessening episodes like this.”

  4. Even though disclosure of our grandchildren’s diagnoses should be helpful to others in their understanding of them, disclosure can sometimes be counterproductive. For example, there are some persons who are simply extremely uncomfortable around persons with disabilities. I take Angelina for swimming lessons at the YMCA, and if the swim teacher were to have this level of discomfort, I wouldn’t mention autism. But, assuming a comfort level, I might mention it to the overall director of swimming. And that way she would be in position to be a champion for Angelina if needed.

  5. Should we grandparents tell our friends and neighbors and colleagues, etc. about our grandchild’s autism? If it can be helpful to tell, yes. If not, probably not.

  6. Disclosure profoundly changes the relationship. Hopefully the change is for the better, but sometimes not. We grandparents need to give careful consideration to this and not treat disclosure in a cavalier manner.

  7. Disclosure is absolutely necessary in a variety of situations. Doctors, teachers, therapists, public service officials, immediate family members, are among those who have a need to be aware of the autism diagnosis. When we grandparents are on the front line for those persons, it is our responsibility to share the information.

  8. As autistic children get older, they sometimes find it helpful to carry business cards that provide a brief explanation of their diagnosis of autism. They sometimes also feel good about wearing t-shirts with statements about them having autism.

  9. Unless we grandparents are legal guardians of our grandchildren, we should let our children determine when and how to tell our grandchildren that they are on the spectrum. In most cases it’s better if our grandchild learns it at home before hearing it from others. It can be wonderfully helpful for our grandchild to have an understanding of himself – why some things are hard for him and other things fun and easy. It is also empowering for him to know that he is among a large community of others who are on this diverse spectrum.

  10. Playground lectures usually don’t work. Next time I’m talking with a stranger at a playground I probably won’t – unless there is a situation that requires it – mention that Angelina is on the autism spectrum. The moment I do that, I automatically prejudice the other person. And the playground is not the place at which an education session about autism will be very effective.

The bottom line is that we grandparents need to do three things regarding disclosing our grandchild’s autism diagnosis: first, continue to learn as much as we can about autism and our grandchild’s specific characteristics; second, know what we we’re talking about when we do disclose the diagnosis; and third, disclose the diagnosis only when it can be helpful.



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