Q&A dilemma of ending relationship with autistic daughter (autism, support)

[Cida]

This fascinates me, because it is about something that is almost never discussed: The problem of a family destroyed by our current expectation that we will keep impossible children at home, no matter what.

The Ethicist: May I Cut My Daughter Out of My Life?
https://www.nytimes.com/2019/01/08/m...f-my-life.html

[E-Twist]

I think it is interesting that the daughter holds it together in school and is able to work part time. It sounds as if a lot has been done to help the daughter cope.

I probably will be in the minority, but I don't think the parents owe the child the rest of their lives. I didn't realize that once a child, even disabled, reached 18 years, that they remained the responsibility of the parents. I thought they could be made wards of the state. I think if I were the parents I would be looking at moving to another state where the daughter could be placed in a group home, although it sounds as if she could possibly hold down a job and take care of herself.

[Mattie]

In this particular case, I agree the parents don't owe this child the rest of their lives. She has issues, but they don't sound insurmountable as far as living independently.

I do know a couple of families who are dealing with similar issues. One has a daughter with autism, she's currently in her seventh year of college, after leaving the first two. Fortunately, she is entitled to generous death benefits from her late father's company which pay her tuition. My friend is not looking forward to the day she returns home. Another friend has a son with severe depression and anxiety. He's 30, lives at home, and she doesn't think he'll ever be able to be on his own. Every time her phone rings while she's at work she jumps, afraid of what news is at the other end. And yet a third has a 56 year old son with Down's. He is in a group home that his parents helped set up in town.

All three of these families have the financial ability to care for their adult kids, but all of them would far prefer those kids live elsewhere.

[fluffythewondercat]

Originally Posted by Mattie

And yet a third has a 56 year old son with Down's. He is in a group home that his parents helped set up in town.

Some years ago I was at a garage sale with some people. Approaching us were an elderly Asian woman and another woman, instantly recognizable as Down's, with hair beginning to gray. The younger woman was vocalizing wordlessly and jerking her limbs about. The older woman was trying to control her.

I thought, Oh my God. The older woman is her mother. And I've read that people with Down's are prone to early-onset dementia. Tragic, all the way around. So indelibly sad.

[parentologist]

Yeah, I read that in the NYT too. A lot of communities have group homes for impaired adults. But honestly, it sounds as if the young woman is too high functioning for a group home. The young woman needs counseling support to help her to keep a job. Alternatively, the young woman might be able to get SSI. In some parts of the country, it's enough to actually live on in one's own apartment.

These parents do not owe the rest of their lives to living with this miserable young woman. I don't know how they can get her out, but there are ways. They should have been planning for this before she left high school. Depending upon how impaired she is, she would have been entitled to public education until age 21. There are transitional living programs for mildly impaired young people, to help them to learn how to live on their own. If she cannot hold a job, there's SSI. From that program, she would be transitioned to a group home.

[Lodestar]

In our small city we have a large rehabilitation industry and a lot of group homes and half-way houses. Over the years I have had contact with a lot of people who work at the rehab and also in the community who have been able to live productive and happy lives.

One local restaurant hires two young women in quite visible capacity and I coffee there nearly every Friday. It always makes me feel good to watch how conscientious they are of their work and how much pride they seem to have in their roles.

I definitely think parents who are martyring themselves for the sake of their adult children have gone above and beyond the call of duty. But I think I understand the need some people have to do so also. There may be many reasons either choice is made.

I guess if anything is to be said for this it's the old standard - different choices for different people. With that said I don't think anyone should be shamed for or elevated for their choice. It's truly a personal and complicated issue.

[Frostnip]

I don't have an easy answer, but I do wish everyone would seriously sit down and contemplate, before choosing to have a child, the possibility that this child may be seriously mentally and/or physically disabled, and what their contingency plan is, in that case.

In the case of the parents in the linked article, it sounds like the mother is depressed by the situation (understandably) and is therefore being purely reactive rather than proactive. That girl's parents have had over a decade of knowing their kid has problems. They need to get with resources like the IEP transition team at the girl's school, social workers, medical professionals, vocational programs in the community, etc. and find out what the options are, winnow down those options to which options are acceptable and feasible, and present that to their daughter so she can make some choices herself. I'm not saying there's going to be a cure-all situation out there or that it's easy, but there's got to be a better and more ethical option than just "when she turns 18 I'm ghosting." It seems like the author of the letter resents the girl for childhood behaviors, too, and continues to hold them against her, which is not a healthy dynamic at all. I think mom (and probably dad, too, but we don't get his perspective) could really do with some counseling themselves.