Worried about my grandson

[Wren]

Hi. I’m from a family littered with high-functioning autism and am probably there myself, although I prefer to think of myself as just an introvert. I have an autistic grandson, diagnosed at two, now six years old. He has been receiving intensive therapy since his diagnosis. In recent months, he seems to have been regressing. He was once reasonably potty trained, but now isn’t. He no longer seems able to eat with utensils. His already limited speech seems to have become endlessly repeating phrases like some kind of ear worm. He’s not playing as much as he was.

The thing is, I think I’m the only one noticing. When I bring it up to a parent or therapist, I get, “Oh, he’s just having a bad day,” or “He’s just doing it for attention.” I see him only every couple of weeks, so maybe this is more obvious to me than those that see him every day.

I’m worried.

 

[Bolletje]

Welcome! I’m not a parent, so I can’t give advice there, but there are plenty of parents on this site

 

[Gracey]

Hello @Wren

it's a tricky one isn't it?

I believe endlessly repeating phrases is quite usual.
if he's using it as a stim,
stims are thought to be used as a means of soothing.

so if he's repeating phrases as a means of soothing,
look for the reason behind it.

what's changed; if anything, for him in the recent months you've noticed a difference?
school? home?parents?grandparents?expectations?routines? fed up with intensive therapy?
Anything come to mind?

if those with him everyday believe he's doing okay, other than what you've written above,
what is it specifically that's worrying you?

Could he let you know if he's unhappy?
Do you talk to him or ask him?

 

[Nitro]

Hi Wren

 

[tree]

 

[Ken S.]

It's possible he is having an "Off" day but the "He is just doing it for attention" is usually a sign of an off day as it is most likely a sign of emotional or sensory overload and the fact that most people I have interacted with that are on the spectrum don't care for attention being focused solely on them and would not want the extra attention. I can't speak for others as every person on the spectrum has a different set of difficulties to deal with. Good luck and I hope you find the answers you are seeking.

 

[Isadoorian]

Welcome to the Forums! I hope you make new friends and enjoy your stay in the process!

 

[clg114]

Welcome to Autism Forums!

 

[Cazelle]

Welcome, Wren. I am wondering, how many off days is your grandson having? And if he is regularly or always having an off day when you see him, could it be that it is because he is reacting to your presence? Maybe he is excited to see you, or otherwise notices a change in his world when you are there and this is how he reacts to that?

Another thought that comes to mind when you say you are worried is this: do you trust your grandson's parents, therapists and doctors to have his best interests at heart? Do you feel they want to do as much as they can to give him the best opportunities and life possible?

 

[Rectify]

Hi @Wren welcome you to the forum. I'm sure you'll gain advice and support here.

 

[SusanLR]

Welcome Wren to the forums.

I never had family or chilldren, but, I am one of those odd ones who have a memory that goes back to
infancy.
Reading :

And if he is regularly or always having an off day when you see him, could it be that it is because he is reacting to your presence?

I would ask if he seems to have these "off" days when you visit.
If you are not a part of his daily routine then you would feel like a visitor.
And I remember I did not react well to visitors.
I would tend to shut down, have selective mutism, and go to my room.

 

[Wren]

Welcome Wren to the forums.

I never had family or chilldren, but, I am one of those odd ones who have a memory that goes back to
infancy.
Reading :

I would ask if he seems to have these "off" days when you visit.
If you are not a part of his daily routine then you would feel like a visitor.
And I remember I did not react well to visitors.
I would tend to shut down, have selective mutism, and go to my room.

It is possible that he doesn’t do well just when he’s visiting me, but I know he’s having potty issues at home, too. I keep thinking of things he used to do that he no longer does—he used to sing songs, he used to be able to name colors and shapes. I know autistic kids often regress, but still...

 

[SusanLR]

It is possible that he doesn’t do well just when he’s visiting me, but I know he’s having potty issues at home, too. I keep thinking of things he used to do that he no longer does—he used to sing songs, he used to be able to name colors and shapes. I know autistic kids often regress, but still...

He may still be able to do those things, but, just doesn't want to.
My Mom told me I did happy things with her too. Like enjoying trying to match or name
colours, draw with crayons, little things like that until I reached 3 yrs. of age.
She told me at that time I suddenly became very withdrawn and sulky. Stayed to myself and was
angry a lot. Just not a happy child. Only when I was alone, amusing myself with a couple of
activities I liked. Mainly playing with my child's record player or outside hiding under a bush
where I liked digging in the dirts with my special tablespoon.

This persisted until I was six, when we moved to a small country town in Missouri to live with my
Grandmother for a little over a year.
Some of the neighbor kids would stop in and seemed friendly. Wanted to help me learn to read
or ride a bike with training wheels. One even got me to role play Cowboys and Indians.
Grandmom had a lot of cats and a dog, a few chickens. A big yard and garden to play in.
I started coming out of my shell some.
Then first grade came. No preschool back then.
Oh, my, did I ever have a fit at first. They didn't have special needs class, just a secondary
smaller class for what they termed 'troubled kids.'
I never associated with classmates. But, things got better.

I had no one to point out these problems or help me with them.
It all just got better on it's own. Learning became easy and I was always interested
once I settled down in school to learn.

Potty issues were a problem with me also. Along with eating pickyness and learning
toothbrushing.
Just a few things I remember from that age and was told about by Mom later.

 

[Cazelle]

It is possible that he doesn’t do well just when he’s visiting me, but I know he’s having potty issues at home, too. I keep thinking of things he used to do that he no longer does—he used to sing songs, he used to be able to name colors and shapes. I know autistic kids often regress, but still...

It sounds to me like you are worried about your grandchild and that he won't be able to reach his potential. I think that in your role as a loving, caring grandparent the best you can do is continue to love and cherish your grandson no matter which stage he is at. Talk to his parents, let them know what you observe. If you trust the parents and therapists to be doing the best they can for him then provide support to them as and when you can. And please just love and accept your grandson for whoever he is and whichever developmental path he takes, and make sure he knows it through your actions and the words you use while around him.

 

[Judge]

Regression of autistic children. Seems to be a complex subject in itself.

Interesting article on the regression of autistic children:

"Regression may be the norm in children with autism, says Campbell, professor of psychology at the University of Kentucky. I think you have operational definitional problems. You have measurement problems. And the phenomenon itself is difficult, he says. [Regression] might be part of a larger, normal development process. Maybe it’s not specific to autism; maybe there are more kids that go through losses and delays and spurts."

Rethinking regression in autism