Question for Parents of Autistic Children and Adults

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What is your plan of action if you're unable to take care of your autistic children? Have you ever thought about who could help your child(ren) when you die, too old, or ill to take care of them?

I'm sorry if this seems like a really dark topic. I'm also not a parent, so I have no clue if you have already thought about this.

This is something most parents think of whether their kids are NT or ASD. I do have somebody who has agreed to take care of my children if something were to happen.

Some parents of children who have greater needs/ unable to live independently also set up specific trusts to insure that their kids will have the funds to have residential treatment, or extra money on top of SSI. They would appoint someone as a guardian in their absence.

We have no plan--not because we don't want to make one, but we don't have the $$$$ to make a trust,and no one we know would be both competent and willing to take him. So, right now we just work on the skills and hope we can get him to where he needs to be, or at least past the point where discipline is appropriate to speak about. This way if he has to go to an incompetent person, hopefully he can still be happy b/c their incompetence won't matter as much. Of course, obviously independence would be better for him.

One of my husband's family members has agreed to raise our children if we pass away. Our son is Aspergery, so we're hopeful that he will be mostly able to be on his own as an adult. He also has a little sister who can provide moral support, advice, and a place to go for Thanksgivings in case he lives alone.

My son's high functioning so we are hoping he will fairly independent as an adult. He also has an older sister who adores him so I'm confident she will make sure he's ok.

I have a currently active thread in General forum ("Same Child different perspectives" thread title) and at this point I would be really grateful for some thoughtful input from parents of school age children in the 5-9 age group. Please read the whole thread to date as I have added a post this morning which relates more to this request.

If you are able to contribute, I thank you in anticipation.

I think that's a very good question. I'm in my early 30's and I think about this all the time. My kid is 3 so we have a long way to go. First off I have life insurance. We didn't spend a lot on a home even though most people do in ny. I try to save as much as I can, earn as much as I can. We don't go on vacations because it's not fun now but that saves us money. My hope is to have another kid that's NT and hopefully he/she will care after his brother when we get old. Our parents will also contribute. I will support my son for as long as I can if he needs it. If he can be independent than I will be very happy. I love my kid and it's not his fault he was born with this. I will do everything to protect him from the state systems.

It is a question my husband I thought a lot about. DD is high functioning, so I am hoping she will be independent as an adult, but if my husband and I die, then my mother will take over guardianship.
One of my nephews, my sister's 4th child has more severe ASD, with global developmental and intellectual disorders. I am not sure what would happen with him and her other children if she and her husband died.

I think it is a harder question depending on the level of support needed.