adult siblings on autism spectrum

[Dobela]

My brother was diagnosed with Aspergers/Autism 3 years ago. He is now 37 and it has been a lifetime of struggle. As my parents age, I am needing to step up and take more responsibility in assisting him. Can anyone recommend good support groups or places for me? So far all I have found are concerning children and obviously my brother is no longer a child (even if he behaves as one sometimes).

[specialmama]

Ah, the fun of it all. My son has severe autism and will require round the clock supervision his whole life. Apart from a miracle of God, of course. My dh and I have made plans so that the burden on our daughter will be light... but yes, I understand you (and my dd will) feel the responsibility nonetheless. Hugs to you as you strive to look out for your brother. :grouphug:

Not sure where you live. There are autism societies all over the place. Just google your city/town/state and "autism society" or "autism support". You're likely to find something that way. I'm assuming he's high functioning enough, I mean he went to school undiagnosed? I'm not being rude or snarky here, just trying to understand the severity. Is he capable of living alone? Many adults with high functioning autism (or aspergers) are able to live alone with some form of social worker checking in on them periodically. Whether that's daily or weekly or monthly depends on his needs. Some live in assisted living operations, perhaps with one worker and half a dozen other high functioning people. If this is not covered, I know many people take this on privately. All you have to do is get word out there in the special needs community. You'd be looking for several families who have high functioning adults with aspergers or downe syndrome or similar. Someone can provide the house, the others pay rent and all families share the cost of the round-the-clock worker. You'd need 3-4 workers so that someone is always awake and home, and if one is sick then there isn't an issue. It's been done hundreds of times.

Let us know how functioning he is, in regards to his living situations/abilities. That will enable us to help you more, same with your general whereabouts. :001_smile:

[Dobela]

He is high functioning. The diagnosis was Aspergers by one psychologist, but when we tried to get him on disability that psychologist said he actually was autistic based on all the growth and medical history my mom kept. So far he has been denied disability although we are fighting it.

He lives on his own but has poor reasoning ability. One of the last evals we had done said he had average intelligence and some college level skills but maybe applied it at the level of a 5-8 yr old. He can't manage anything. He drove his neighbors nuts in a condo my parents helped him purchase so now he lives in a small apartment in the garage on their property. He can't manage money, groceries, or other supplies. He has a dog, a complete impulse buy without warning, but we have to buy food, remind him of vet visits, grooming, and so on. He lives on his computer downloading every free show, song, and book he can when he isn't watching some kind of Star Trek show on TV.

He had difficulties his entire life. He was identified with a language deficit when he was 3ish and began speech therapy then. But there was no diagnosis in the 70s. When he went to school, he managed ok for 2 or 3 years, then the social skill issues created serious problems with one less than understanding teacher. After a few years in a self contained classroom with profoundly disabled children, he aminstreamed back into regular classes. He did graduate HS with a regular diploma, did some college (just a class or 2 a semester under a rehab bill), and even had specialized job training. He has never been able to get or keep a job on his own so my parents just made a place for them in their business. My dad has now retired, sold the business, and my brother is out of work. He applied for unemployment, but they said he cannot receive it, nor can he receive job placement assistance because of the Autism diagnosis. My parents are on a very reduced income and are having difficulty providing for him like before.

He was in special ed all thru school and the diagnosis was always mild learning disability non specific. When he went to a special college program for people with learning disabilities, the did not diagnose the autism either. Of course this was the early 1990s. He does have a drivers license, although we are not so sure he is really a capable driver. My parents let him do it as a teen because they were told he would just take extra time to mature.

He lives alone but cooking is beyond him. He tries but doesn't understand why he can't do things like subsitite salt for sugar. Following directions on packages is difficult, he can't follow menu plans. He either eats with my parents or lives on cereal, oatmeal, and TV dinners. I recently bought him 8 large boxes of cereal and he ate them all in 2 weeks because that was all he had to eat apparently. He is grossly overweight and has several health problems. When he is sick, we have to pressure him to visit the doctor or just make the appt and take him ourselves.

He has a couple of friends, but they are as much a problem as anything. My brother is gullible and easily taken. He is generous to a fault and many take advantage of that.

Sorry this rambles so much. I was just writing as I thought it out. We are at a loss for services right now because he has been turned down for disability and medicaid. Most agencies here won't take a person on without those or they are just too high for us to pay privately. He completed the job training thru rehab services 2 years ago and while they promised a job, they could never match him up in one. My parents are both in poor health as well and are plain old tired of dealing with it all. And, most of the time he can irritate the snot out of me. He also resents my trying to help.

I need help, sometimes I just need a place to vent. Both would be nice.

[specialmama]

From the sound of it, your brother should NOT be living by himself. He has proven that he can't care for himself properly. The best advice I can give at this point, is to contact an autism society, speak to one of the volunteers and share your story. Tell them you NEED to get a diagnosis, and ask for a referral to the most understanding psychologist who specializes in diagnosing autism spectrum disorders. Once you have that document, you will be better armed. You could then apply for some form of social something for him. Again, not sure where you are so I can't help you out there. Benefits vary place by place. He needs some sort of income, so you need a diagnosis pronto. Sounds like that first psychologist was a little quacked. It may cost a bit to get a good psych assessment and a good report, but it will be SO worth it in the long run. It will enable you to access all sorts of services and that will help YOU and him.

Just a little bit on wills and planning: here in Canada you could get a Henson Trust (a PROTECTED trust acct), which is put in place by a lawyer who has experience in it. It varies by province, but our lawyer here in AB specifically advised us to put our son down as the beneficiary of our house. This is because it is the only thing that the government can't touch. If you leave money for a person with a disability (and that money is not in a Henson trust), the gov. can remove all financial benefits (or the money itself.) Wherever you are, I would advise you to talk to your parents and get them to see a lawyer who specializes in this. They know all the loopholes on how to write wills. It's not as easy as many believe it to be, the gov can and will step in there and take everything away from a disabled person if it is not done properly.

Alot of people don't plan properly for this kind of thing, but it is VERY important. There are horror stories out there about people being locked up because their long-term care was not properly planned out by their parents. All it takes is one incident, or one phone call from someone, and they'll come and take matters into their own hands. You won't like that, nor will your brother, and I'm sure it's not what your parents want. They probably just don't know that there are options out there. Again, an autism society will be able to point you in the right direction. :grouphug:

[Dobela]

We are in Arkansas, in a smallish town. My parents are working on a will with an attorney currently.

[Jill]

I don't know how much info is here but since you are internet connected, you might search and reach out to
http://www.wrongplanet.net/

[Momto2Ns]

The department of mental health should be able to refer you to adult service for autistic family members. They will want to qualify him for services, but will do that with either questions to family members or a visit of their personnel at their expense. They can then link you up with Judevine. They are the autism specialists. It may be the nearest larger city, I know, there aren't a lot of large cities in Arkansas, but there will be regional DMH offices and probably Judevine offices as well. Both work with adults as well as children and can help you.

Start with DMH. Just look in the phone book. If it isn't listed in your town, look for the directory for state services and start there. They can refer you to the nearest office. He doesn't have to be on disability to receive services from DMH.

[Dobela]

Thank you. I will check into both of those. I appreciate the help eeryone is giving.