So What Happens When Your Autistic Kid Grows Up?

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When my profoundly autistic kid was little, I think most of the parents around me just put their heads in the sand and decided that their kids would be cured when they grew up.

So imagine your communication ally impaired adult autistic child in a group home or foster home with low paid, undervalued care givers who look at your kid as a job.

not all group homes are filled with staff who don't care........some are filled with wonderful caregivers...it's up to you, as a parent, to locate a suitable place for your son or daughter

In Oregon, the county places your kid and you have no choice in the matter. The county can place your kid 200 miles away in another county. It's up to them.

In addition, what about quality of life? Assuming that the group homes follow the rules, health and safety are addressed. Beyond that, nothing. The states can't measure what can enhance lives, self-esteem and happiness so they don't try.

Passive disabled zombie kids are the likely futures that parents don't want to face.

To paraphrase Ben Franklin. if parents don't hang together, our kids will surely hang seperately.

Then it is your choice to move the hell out of Oregon. I think you are not telling the whole story (omission by error, not by design). If you are the primary caregiver you need to get legal custody (I think this is defacto for parents of disabled adults), you need to financially and logistically account for your child in your will and you need to be on top of it all.

One of my children has a high chance of being below the cut-off IQ (she has a non-autism, genetic condition) and it is possible she will not be able to take care of herself when she is an adult. She is a baby now, so it is far away, but our current lifestyle is impacted by how much money and planning we are putting toward her future. My son is high functioning autistic, (probably asperger's like me) so we don't have to worry as much about him.

But to say that you have no control or influence or no choice is a defeatist attitude.

I sure as heck AM NOT saying I have no control. That's why I'm familiar with the laws. I'm trying for the rest of my life to have my daughter surrounded by caring people and foster siblings who are surrounded by caring people who know them and have a stake in the group home community that we're working on.

I'm just frustrated that their aren't better group home models out there.

The ones who gave up control are the ones in denial and who think that everything's just fine with group homes, except for few exceptions.

Here in Upstate New York, we have a great community resource center for both Autistic and Asperger kids. It was started by a
local medical doctor and his family and friends because he has an elementary age son who has Autism. They have outstanding
residential facilities for kids as well as a treatment program for preschoolers called the "Promise Program" and a school for older
kids called, "Tradewinds." This community resource is called, "the Kelberman Center for Autism." It has a website so you can
visit it by just Googling its name...Kelberman Center for Autism.

Not all states have QUALITY programs for kids with Autism and Asperger' Syndrome...and there seems to be nothing for adults
since Asperger's Syndrome has only been recognized by the psychiatric bible...DSM...in 1994. Some families relocate to high tax
states like New York and Massachusetts as their state budgets appear to recognize the growing needs of children with Autism and Asperger's Syndrome. The Kelberman Center for Autism is well funded and always creating new programs for children and
soon, when these kids reach adulthood, there will be an increase in programs for adults.

In most of the Pacific NW, it goes county by county.
Because of how terrible most mental health laws are concerning autism, most autistics are classified in the most horrible manner. They are treated like s**t and some case workers who handle an autistic's IEP, deactivate the IEP after graduation or modify it for college use.

I think that the county I live in is the best but they're stuck having to follow backward state laws.

Oregon has one really cool organization that was started by care givers. It's called Kindtree and they celebrate autism. They have yearly retreats that feel like we're in an autism spectrum Woodstock.

we are in Ohio, and there are group homes throughout our area which I have heard of and may very well choose when the time is right for our daughter. she has been evaluated and would fit into a group home setting....Our oldest daughter worked in nursing homes where she heard horrible stories of nurses mistreating and robbing patients, it is quite sickening.....this is a topic that very much troubles me, there is asite called "Abandoned memories", where urban explorers visit locked up asylums and institutions..the files remain of the patients, and the horrid abuse that went on is documented...it is so sad how people used to be treated by the medical profession....

Last edited by rushfanatic on 05 Dec 2007, 5:14 pm, edited 1 time in total.

One question I asked the social worker was how much could I do for my daughter if she were placed in a group home or foster home. She said that some parents annoy the home managers so much by bringing things and trying to help, that they won't want to take the (adult) kid, even if the kid isn't a lot of trouble. So the kid gets placed in a worse home.

So much for thoughts of lessening the lonliness and isolation that my daughter would feel. However, she's not going to have that kind of life. At the moment, I'm exploring making a business plan where five parents incorporate and buy a house for our kids. Since the corporate board members, us, love the group home residents, it would be in our best interests to have care givers who "feel the love." Feel valued, at least.

There are some legal things but I have the rest of my life to get it right.

Am have lived in one institution and two regular residential homes up to now as an adult, and can say that there are some great support staff out there who do care,not all of them are nasty.
Over here,any residential home and the environment outside it am go to has to be risk assessed over and over,they also have to risk assess noises,whether am would be challenging to other people am find noisy/have problems with etc. before moving in anywhere.
They then get in autism specialists who know am to train staff about am,autism and physical intervention.
Then,staff have to be inducted with am over a few weeks whilst staff from previous home work with them.
The managers here [there are more than one here] encourage parents to come and visit,to say any problems they have,to ask questions etc.
Am diagnosed as having complex needs and challenging behavior as well as autism and learning disabilities so they put am with just one other person within the current residential home,everyone else lives downstairs,this is what would be perfect for many with autism with the same issues,because too many people not spaced out enough it's not suitable.
a very good comprimise [like this house] for those who need full time support/security but also need quieter environment would be to have the top or bottom floor of the res/group home reserved for two autists who can't cope with the bigger group and need more individual support,and the other floor for more people.

Many of the staff who were in previous res home,are very nice and are coming here to visit am and see the place.
Have already been visited by one of the managers of the institutional home who am got on with very well to see how am doing and to see how the new place looks.

Am guess it does depend on area and how well the homes are regulated,the ones am have been in are certainly not flawless [have a look at blog for problems in those] but theyre better than private homes by a lot.

Am hope plans and funding goes well for the future res/group home planned.

KingdomofRats, thank you very much for your perspective. I wonder if the UK is very different from the US. More funding? Less funding? One thing that the UK has is universal healthcare so even if the care givers aren't paid much, they're secure about not losing everything if they have medical needs.