Long term outcomes for adults with autism

[wytchywoman]

Hi all,
DS2's dad gets retirement and recently he has been investigating the possibility of going before the retirement board to apply for G to receive his benefits once he passes on, no matter what age G is, due to autism. As far as we know, there is no set criteria right now that would determine what would qualify a person as being "disabled" enough to receive a parents benefits as an adult.
I am trying to do research into long term outcomes for adults with autism spectrum conditions and am pretty much striking out. I have seen some references to a few studies, one from Great Britain and one from Sweden, but can't actually find the studies online to be able to cite them for the board.
Does anyone have any solid links or resources about this? Anyone seen these studies online and know where I can find them?
(disclaimer: do I think my son is "disabled"? no. I don't think that anyone is "disabled". I hate that word and really wish it didn't exist. I do however, worry about my son's future, and whether he will be able to care for himself independently or not. So if he can qualify for this and we all have the assurance that he will have an income whether he can maintain employment or not, then that's one less thing to worry about, kwim?)
Thanks in advance,

Michelle

[kozer1]

I would imagine that it would be difficult to know each autistic individual's outcome for the long term - things can change and you have no clue how G will be years from now...The assurance would be great "just in case" if you can get it, but there's no way to really know if you son will ever be able to maintain employment or not at this point of time, kwim?

But who knows...maybe someone can pull up some studies for you (I've never had luck either as I am curious!) Even with study results, like I said there is no way knowing "for sure" now G will turn out years from now! But I wish you all the luck in having this work out for you

[Kristine233]

I think you may be having a hard time finding information because there aren't many diagnosed Autistic adults. The diagnostic criteria changed drastically in the 80s and wasn't fully adopted until even later. Up until then an individual had to also have schizophrenia to get an Autism diagnosis. So really, just now are diagnosed Autistics entering adulthood. (except for the lucky ones who did get a dx during the transition or more 'severe' cases) Of course adult Autistics existed before, but most were undiagnosed or carried a different diagnosis. Thus, lack of study and research to accurately portray this population. Even with a growing population of diagnosed Autistic adult its still going to be hard to study because it is such a broad spectrum.

All that aside, my guess is that you would have to have a determination of "disability" from SSI first in order to get more long term help?

[wytchywoman]

Thanks mamas for responding. This whole process is warped and it really kind of p!sses me off that G's dad has throw it into my lap because I'm "the expert" . I've told him a number of times that he needs to ask the local board what their qualifying criteria is for "disabled". Right now that could mean virtually anything. I think a good starting point would be to see if I can find out what the qualifying criteria is for SSI for adults and build off of that in case the board doesn't have set criteria. The really big problem is that apparently we have to do this now, while he is alive, otherwise it's ten times harder when he passes away. I'm not sure I understand why that is but according to him he needs to get this settled soon.

[BookGoddess]

It's a difficult question to answer as the others have pointed out. There is a huge spectrum with individuals who can function independently without any services to those who function at a much lower level and everything in between.

Another factor that complicates giving an answer is that studies done decades ago may not be relevant. Children on the spectrum today generally get Early Intervention and therapies either in school or privately or both. There are so many things you can do today to help an individual on the spectrum. A lot of progress can be made with the right interventions and therapies targeted to what the child's issues are so it's hard to say that a child or teen will be "like x" because you just don't know how far someone will go. Before anyone says it, I know that not every child on the spectrum gets all the services they need, but that's a separate discussion. And each individual of course responds differently to therapy. Some make fantastic progress over several years. Others may not have the same results.

[CarrieMF]

DS2's dad gets retirement and recently he has been investigating the possibility of going before the retirement board to apply for G to receive his benefits once he passes on, no matter what age G is, due to autism

Can't he just put G down as his benefactor?

[wytchywoman]

Originally Posted by CarrieMF

Can't he just put G down as his benefactor?

G is automatically a benefactor until he turns 18, or 23 if he is enrolled in college full time. What he is trying to do is get G listed as a benefactor no matter how old G is once dad passes away. Basically that qualifies G to get dad's retirement until G passes away.

[CarrieMF]

G is automatically a benefactor until he turns 18, or 23 if he is enrolled in college full time. What he is trying to do is get G listed as a benefactor no matter how old G is once dad passes away. Basically that qualifies G to get dad's retirement until G passes away.

I understand that but why can't he just put G's name down? Is it the particular plan that they have? Here you can put down anyone's name. For Dh's retirement funds he put me down. For mine I put down dh & all 3 of my kids so they each get a portion.

[wytchywoman]

Originally Posted by CarrieMF

I understand that but why can't he just put G's name down? Is it the particular plan that they have? Here you can put down anyone's name. For Dh's retirement funds he put me down. For mine I put down dh & all 3 of my kids so they each get a portion.

Yes, he is already listed as a benefactor, but simply doing that would not make him eligible for benefits once he turns 18.