There are all sorts of things that you should NOT say to autistic persons and to autism families. And there are also things that are wonderful to say.
We autism grandparents can be helpful to our families by not only saying the right things and not saying the wrong things, but also by knowing about this and helping to inform our family and friends.
Following is list of sixteen fundamental things – in no particular order – to say and not to say:
Don’t ask about or mention vaccinations. Although debunked over and over again by numerous scientific studies, many persons hold the firm belief that vaccinations cause autism. This is a very contentious issue on both sides.
Don’t mention Temple Grandin or Rain Man or Sheldon Cooper. Almost everyone who is involved with autism knows who these folks are and they resent those three stereotypes being heralded as any sort of norm for the autism spectrum.
Don’t question the diagnosis: “Perhaps it was a misdiagnosis,” “He seems so normal; I bet next time he won’t receive that diagnosis,” “Are you sure he really has autism?” etc. The diagnosis is personal and is something that the family is already dealing with in their own way in consultation with specialists.
Don’t ask the parents “How is [child with autism]?” without also asking about the other siblings. DO ask about all siblings at the same time.
Don’t offer autism expertise: “I’ve heard that . . .” DO, if you want, offer this: “If you need any research done on resources or anything, I’d be glad to help. And I’m really interested in learning more.”
Don’t mention the family’s genetics: “Did either side of the family have autism in it?” This implies blame.
Don’t say, “I think I’m a little autistic at times,” or “I have sensory issues too,” or “I also feel like I don’t fit in.” This confirms your ignorance of autism and also confirms your insensitivity to the autism family.
Don’t ask whether the person with autism takes medication. This implies that you think there are negative things for which he should take medication.
When you learn that someone has autism, DO say things like, “Well that explains a lot about [person with autism and/or that person’s actions]. Thanks so much for sharing this with me.”
It’s fine to say, “Tell me about autism,” rather than pretending to know.
DO say things like, “Would you like to come play with us?” or “Let’s schedule a time for us to get together.” or “Come join us!”
Don’t say, “He’s not at all like [another person you know with autism].”
Don’t say things like, “I don’t know how you do it,” or “Life doesn’t give us anything we can’t handle.” The person/family likely already feels the load without you confirming it. They would rather hear things like, “Pick a day next week for me to babysit.”
Don’t say things like, “I wish he/you would calm down,” “I wish he/you would just look me in the eyes,” “I wish he/you would stop that [repetitive motion]” etc. Persons with autism are compelled to display a variety of behaviors that are not “normal” and that often bother or concern other persons. But often such behaviors have a beneficial function for the person with autism.
Don’t say, “He/you must have high-functioning autism.” The term “high-functioning” is a label and is dismissive of the fact that everyone is different.
Do say, “He’s lucky to have you as a parent!”
We grandparents can incorporate this knowledge with not only what we say ourselves, but as we educate our family and friends. They will greatly appreciate and benefit from this guidance from us.