Services for Adults with Autism
I found a great review of the Autism Society National Conference which is worthy of sharing if only to demonstrate that the concern about lifelong services and support is not limited to the families we come in contact with in our own area.
Leigh Attaway Wilcox, the reviewer, and a mother of a child with Aspergers writes:
When questions began, it was quite obvious to me that the main focus of this conference would be on the stark and disturbing lack of services and supports for young adults who are “aging out” of the public school systems and how we can address it.
Exactly. Parents of typically developing children may look forward to the time when they become empty-nesters with some trepidation, but also with the confidence that –if they have done their jobs right–their kids will flourish and prosper as independent adults. When your autistic child reaches adulthood you may very well be faced with the challenge of caring for him for the rest of your life or finding some other individual or facility which will provide necessary levels of support and assistance.
Fortunately, the issue of support services for adults with autism is receiving more attention that it was even a couple of years ago. Just this morning, I read an article about a study being conducted by the University of Utah School of Medicine which aims to identify gaps in supports for adults with autism and better understand why some fare better than others. In my home state, Autism New Jersey just released a document entitled Connecting with Autism: A Blueprint for Lifetime Support which identifies goals and activities that will improve the quality of life for New Jersey’s growing population of adults with autism. This document was created following a series of interviews with families from all over the state.
This is all great news but most it seems to me that these research studies are taking a macro-view of what needs to be done to support adults with autism. None of it is particularly helpful in assisting me as a parent to determine what I need to do right now to prepare my 8-year old for adolescence and adulthood. I do know that we will continue working actively with his school and therapists to increase his independence and his capacity to appropriately engage in and enjoy leisure activities. If I had a blueprint that showed me how to maximize his ability to function independently as he transitions to adulthood, I’d read it thoroughly and often.
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@ZombieMom_Speaks@xanga – Thank you very much. My brother is one of my best friends. I’m actually 4 years younger than he is though, so little sister, haha.
@rachelsimon – I agree. And the need for residential services will only become greater over time.
@Murphy_Rants@xanga – You’re an amazing big sister! Not many people are willing to pick up where a parent leaves off, and I think your brother is so lucky to have you.
My fiance was diagnosed with Aspergers when he was 18 and now he’s 26. He has a mild form of Aspergers, but I still worry about him. He has lots of issues talking on the phone and meeting new people. He still has to bring his dad with him to places like the financial aid department at his college to help him talk to the people there. He still relies a lot on his mom and dad.. I’d like him to break away from them more and become more independent, but I don’t know if it’s possible.
Here is a small example of what I’m worried about. We’re engaged and when we get married and move in together, I’m afraid maybe he’ll let something go, like a loan payment or something if he can’t pay it and he’ll have too much anxiety about talking on the phone to a new person that he’ll just let it go and he’ll try to let it “work itself out” because he does that with a lot of things when he has to talk on the phone or to a new person..I’m afraid he won’t be able to get a good paying job in the future because he’ll be afraid to call his interviewers back on the phone.
He had a job this summer and whenever he would need to call off because he was sick, he wasn’t able to do it because of his phone anxiety. I’m worried that in the future when he gets a real paying job, he’ll do that and get fired.
He can only have his parents help him for so long.. And I try to help him as much as I can, but sometimes I just don’t know how to help. He needs to be able to help himself. I can’t hold his hand through everything. I can’t call his job for him to tell them he can’t come in, you know?
Such services is a big help to those who are in need. Neither parent or sibling can aid them forever and they will need help to ensure that they can eventually help themselves.
@Murphy_Rants@xanga – I can relate to your concerns, because I’m a sibling, too. (My sister has an intellectual disability and has not been diagnosed as also having autism, but some people have speculated about that.) Although I don’t have a solution to your dilemma, I think you might find support and maybe even ideas from the sibling support community, which is gaining strength worldwide and which has been very, very beneficial to me. The core of it is the Sibling Support Project, run by Don Meyer, who was the same person who began SibShops. For info see: http://www.siblingsupport.org/. The issues you bring up – the scarcity of services AND the disengagement of some parents – are very hot topics among sibs.
This is a very real issue that affects millions of families, and I’m so glad you brought it up here. I’d like to add a related problem, which is that, in the states where there are residential services for adults, there are almost always waiting lists, and most of them are years and years long. Combined with the dearth of any services, this is an enormous crisis – one which gets almost no attention outside of the disability world.
This is something I wonder about constantly. My brother is 24 and I doubt he’d be able to live completely on his own without a lot of help. He was never diagnosed until he was 22. He’s extremely intelligent but I can’t see him getting a job, driving, or going to the grocery on his own and picking out food. Of course it’s not because he CAN’T do those things, but he is how he is.
I’m away from home because of college and our mother is an alcoholic. I worry more and more each year what I’m going to do for my brother and it’s also important that he can adjust and be happy too. It’s become obvious that if anyone is going to help him it will be me but I have no clue where to start to get him more independent.
I just have to get him out of that house because my mom is not exactly the most nurturing person, not to mention she has no clue what autism is.