People often ask me, what’s the hardest part of raising or teaching an autistic child?
I always answer: On what day? At what hour?
My autistic child is an independent adult now, and I spent a decade seeing to the care and welfare of a beloved parent going through the bedeviling stages of dementia and physical decline. It filled me with a strange sense of deja vu, as if going through the process of raising an autistic child again, but in reverse. Children progress. They learn to communicate in nuanced ways, roll with the countless changes to routine in a day, make independent decisions, identify their own needs and get them met. The adult with dementia loses these things cell by cell. Communication wanes, self-care and decision-making becomes impossible, independent mobility ceases, emotions flare then die, routine again becomes bedrock.
That reverse process steeped me in such deep sadness, and among so many challenges there was no single hardest thing. But one of the most difficult commonalities in raising a neurodivergent child and caring for a parent with Alzheimer’s or other dementia is this: being second-guessed by people who have nowhere near a full grasp of the facts of the situation but feel entitled to their opinion.
In elder care, you get a lot of the same stressful platitudes you heard when raising your autism spectrum child:
“Have you tried . . .?”
“You really should . . .”
“Why don’t you just . . .?”
‘She never did that with me.”
“At least you can . . . ”
I got pretty good at deflecting such comments in various ways, from silence to stink-eye to kindness to reflecting the questions and comments back to the “adviser.” But how much more peace, comfort, confidence, and energy would have been mine if I hadn’t had to deal with the thoughtlessness, whether benign or judgmental. Either way, I don’t forgive it because “they meant well.” They may have meant well but they didn’t think before speaking.
The lesson I learned in all this changed the way I communicate and relate to others in the spur of difficulty. So this is my plea: when talking to people who are facing challenges and didn’t ask for your advice, who are grieving (loss takes many forms), think once, think twice before you speak. Ask yourself:
Do I have all the facts?
Is it any of my business anyway?
How might what I’m about to say be received by someone who’s already hurting?
Am I imposing my belief system on someone who might not share it?
Will it be helpful to anyone other than myself? Am I putting my need to say it over the feelings and needs of the people actually living it?
Might I be more a bringer of peace by what I don’t say?
© 2015, 2019, Ellen Notbohm. Updated February 2025
Photo: cottonbro and pexels
Categories: autism, autistic, ASD, Alzheimer’s, dementia, caregiving, caregivers, eldercare, parenting, aging, neurodiverse, kindness
Thank you, again, for so eloquently stating my feelings and frustrations on dealing with so many people (family, “friends”, medical staff, teachers, therapists, and outsiders) that continue to second-guess everything I have done for my children. I’ve taken many blows to my self-confidence and self-esteem, but I have always tried to stay true to my specific child’s needs.
It was just recently that my elder brother admitted to me that he had his doubts many times about my parenting, and apologized to me.
That really meant a lot to me.
Healing can be had on all sides, yes? It comes in many shades, but the possibility of it is one of the things that can keep us going.
These are great and thoughtful questions, Ellen. I think we can ask them in other situations, too, thus reducing conflict and opening up a space to start understanding our differences.
So very true, Donna. As I constantly advocate, the accommodations we make for people with so-called special needs or in challenging circumstances almost benefit the larger community as well.
You have said out loud what I have been screaming inside. I have the dual role of caring for an autistic 18 year old young man and my Mother who has dementia. Keeping the plates spinning is hard while all the time trying to smile and appear grateful for unsolicited but well intentioned advice. The absolute exhaustion of being kind to ‘everyone’ is indescribable to anyone who hasn’t walked this path. So thank you Ellen yet again for giving me the permission to shed some of that guilt and take a break from ‘being nice to everyone’.