Adults with ASD: Where Are They Now? (And What Do They Need?)

Adults with autism who will not be able to live independently will require a special community in which they lead productive lives of quality and security to meet their special needs. Unfortunately, such communities are extremely rare at this point with the situation calling for an individual group home type of setup which cannot provide for the quality of life we parents want to see for our children when we are gone. My wife and I have a 17 year old moderate to severe autistic son, and we have drawn up a detailed plan for a state of the art community that will initially be home to approximately 20 residents. We are looking for a dedicated group of parents and professionals who would like to embark upon, what will eventually become, a model community for autistic adults. This is not a difficult venture, and merely requires insight and proper planning. Our children deserve a true home when we are no longer able to provide for them. The time to build is now. I am willing to share our plan and all its details with any group of parents who wish to start providing for their children's future.

I am a teacher by profession and have been writing my son's vocational training programs for 2 1/2 years for his school to implement. We have already appeared on two local TV stations showing how successful autistic individuals can be when they receive the proper training. We even have one of the TV broadcasts on Youtube. The link is: http://www.youtube.com/watch?v=Det5pv2Wgzc There is no reason why any autistic individual cannot be trained to be productive in some capacity, and live out a full, rewarding, and productive life.

If you are interested, please contact us at mlstuart1@comcast.net. We currently live in Florida but are willing to relocate to any state where we can work with a group of individuals to make this a reality.

Oh My Gosh. I am about to cry. I have looked for a very long time for this kind of information. I have a son, 20, diagnosed with Aspergers at age 17. I live in a very small town in NW Texas. Thank God for IEP's and small schools or he would not have graduated. He wants to be independent. He wants to get married some day and have a family. He wants to be a great father.
He has 2 siblings, a brother 26 and a sister 16, who love him very much but, get very frustrated with him.
His father and I are college grads. I have a degree in social work and psychology. His father teaches at our community college. After 20 years of not understanding this "autism thing" my husband and I are divorcing. Our 31 year anniversary is tomorrow. My husband got tired of the everyday question of "what are we going to do with him and how are we going help him?" He also got tired of me always "looking" for the answer to help our son.
I have always prided myself in the fact that we did not let our son fall in the cracks while he was in school. But, I am so afraid he is falling in the cracks now. I need help with "Adult Child with Aspergers"
SURELY THERE IS SOMEBODY OUT THERE WHO CAN HELP ME WITH WHAT IS NEXT.

Hi onelisa.

I'm so sorry to hear about how difficult this has been, and especially about the end of your marriage. There are so many stories like this, and it shows how desperately families need understanding and support.

Regarding your concerns about your son entering adulthood, I think you will find there are many families in the same boat, or who are going to be in the same boat soon.

One helpful resource is "A Guide to Transition to Adulthood" by the Organization for Autism Research:

http://www.researchautism.org/resources/reading/documents/TransitionGuide.pdf

I hope you will be encouraged to hear that there is a great deal more focus being placed on adult issues and needs at the national advocacy organizations (Autism Speaks and the Autism Society of America), and that here at IAN we will be launching adult surveys meant to inform both research and policy. At the moment, there is very little information available about the situation of adults on the autism spectrum in the U.S., but we hope to help change that. Also encouraging is the appearance of programs focused on adults with ASDs, such as the Center for Adults with Autism Spectrum Disorders at Towson University, here: http://www.towson.edu/chp/caasd/

Until Saturday of last week, I had stayed at a place in Portland for two and a half years, and which I had had to myself almost all the time, day and night. Then the owner found someone to rent the place, and they moved in. That was Saturday morning. He had said that I was welcome to stay at his residence, but I was very afraid I could not cope with that, and I hated even the thought of it because I had no way to decide if I should or not. The day they moved in, he was not there, nor the next day, so I had no way to go to the bathroom. So, the morning of that second day, when still no one told me when I was going to get out of there, and they were just relaxing, I was so frustrated, and afraid, and constipated, so I snuck out the back and headed for the only place I felt would be safe to use a bathroom: the Hood River library. That's where I am now. Three days ago I also found a bathroom at the marina that I seem to be more-or-less free to use late at night, and I sleep nearby on the back deck of a building that I think is something like a city of Hood River building, right by the float plane. This morning I woke up shivering a little, but that was good because my ability to keep my core temperature from getting to hot seems to have stopped working entirely. I can't even move much inside the cool library without getting hot, delerius, dizzy, and very unpleasantly exhausted. So, after I used that bathroom at the marina, I was still cold enough to feel Ok for about five minutes as I walked easily toward town. By the time I got to the pedestrian bridge near the Museum, I felt awful and exhausted again almost instantly. I don't remember now what I did from there, but at some point I walked sounth alopng the highway that goes along the Hood River river, the same name as the town, and eventually made my way down a recreation area trail to the river, and got to the island and washed (or rather tried to) my clothes and me. I really, really, really need a place to stay. I had hoped I could get a room at the Lone Pine motel if the roofers doing at the Port of Hood River building would hire me, but the boss said he didn't need any more workers. It was windy there, so I thought I woulod not get overheated too easily, and there a bathroom inside that I might use, plus water to drench with.

Gemini, you must be so scared! Is your town big enough to have a shelter? You're in or near Portland, right? I'm sure it has at least one shelter. I would go there and ask for help. If you don't know whether there's a shelter or not, I would try approaching the staff at a church (preferably a bigger one--large congregations tend to offer more service and outreach programs) for help finding out if there is one. Do you have any family or friends you could turn to for help? Another thing you could try would be to look up your city or county's Social Services office in a phone book or online and contact them for advice. In fact, that might be the easiest way to start finding help.

It sounds like you're worried and uncomfortable about being around other people, so a shelter may not sound like a good idea to you, but it would be safer than sleeping out in the open. It would give you a safe place to figure out where to go from here.

I'll be worrying about you. I hope you'll post again about how things are going.

Gemini, like Sue I am so sorry to hear you are going through such a terrible time. Sue's advice was very good: Staying outside is not safe, so turning to family, a local shelter, a church group that will help, and/or your local Social Services Department is really necessary. The local phone book should guide you to county social services offices.

If you have a diagnosis on the autism spectrum, it may be possible to qualify for assistance from government programs. For example, do you currently receive disability benefits of some kind? Do you have a social worker? If not, what you need now is shelter and someone to guide you through the steps to get more help.

Starting local is best, but if you have trouble locating the county social services offices, you may want to try the state offices, here:

Oregon Department of Human Services
Seniors and People with Disabilities
500 Summer Street NE E02
Salem, OR 97301-1073
503 945 5811
http://www.oregon.gov/DHS/dd/contact_us.shtml

Another resource that might prove helpful: the Autism Society of Oregon at 888-288-4761.

I'm so sorry things are so difficult right now, and I hope the situation improves immediately.

I am an adult in my mid 40s with ASD. I did not know I was autistic until just a few years ago. I have always been different, but really never understood why. It was good to finally be able to identify my difference. It has made my differences a lot easier to deal with in some respects. It has somehow given me some relief to know there are other people like me.

Identifying it has also created issues that are equally as difficult to deal with....like prejudice. People tend to not see "Cyndi" and focus on "autistic," which can be amazingly frustrating. There have been many counselors over the past couple of years who I believe their hearts are in the right place, but they truly do not understand autism or what it is to be autistic.

I am autistic. I cannot change this. It just is. I have been asked, "If you could not be autistic, would you want to change to be non-autistic?" My answer is always the same. No. I would not change one thing about me.

Non-Autistic people always think autistic people want to be assimilated into the collective. They always think their way is the right or only way to live life. My observation of non-autistic people is that they are amazingly cruel to other people. I do not have this ability, nor would I wish to acquire it.

I am currently enrolled in college. I have a 4.0. It is a 4.0 because I do not get credit for the classes in which I score 100 and higher semester averages. I tried to speak with faculty about this, I ended up in the ADA ladies office. She has no experience with autistic students. She has determined I am not autistic because my grades are so high and because I am a little more on the "normal" side than the autistic side. She says I am dyslexsic. She says I do not need an ADA statement.

There is no reasoning with any of these people. I give them honesty and what is in my heart. They just do not get it. I am autistic. I do invert thought. I am INTJ personality and I think in images, which not many people truly understand. So now, I just drop the classes in which I have issues. It is much simpler than trying to help them to understand.

My thought has moved from trying to get other people to understand about autism more into how I can cope with trying to accomodate their views and opinons.

My Mom says there are not many non-autistic people who understand about my big heart. She says some of them might understand, but most of them will not. I tend to be very open, and giving. I also tend to follow directions literally, which takes me into problem areas as well.

The honor ladies at the college have strongly advised me not to ask questions in my classes because sometimes my thought is very detailed and might be a little out of the general learning curve.

I can get so inside of a thought that while I am in it, I understand perfectly what it is I am thinking about and how I got there, but then if I come back to it a couple of days later, I do not know how I got there. Sometimes I can be so far inside of a thought, it is like I blink and time has progressed.

It feels like I am walking through wet sand to be able to get to learn all of the things I want to learn at the level I want to learn them. I now write my extra thought into notebooks and I am learning to answer my own questions. It is my only hope, to be able to answer my own questions. It means I will never have to depend on other people who may or may not give me a correct answer.

I am a particle cosmology and geoscience major. It is so difficult to be patient to get my degree so my thought will be considered more seriously.

My sincerest apologies for this being so long. It is difficult to find places where there are people who might understand when they read my heart.

Thank you so very much.

Cyndi

Hi Cyndi, and welcome to IAN.

I am so sorry to hear of the difficulties you've had. I have heard so many times from high functioning adults that the systems in place to help those with disabilities often can't "see" high functioning autism because of high intellectual or verbal ability. The social blindness that can be so crippling at the university or in the workplace is not often understood - which means the types of supports people need are not delivered.

I thought you might be interested to know that the Organization for Autism Research (OAR) recently produced a video to help college professors understand students with Asperger's - you can get it on their website, here, and it can easily be shared with your professors, too: http://www.researchautism.org/resources/AspergerDVDSeries.asp

Of course, we hope at IAN to collect the first national data set on adults with autism spectrum disorders. Hopefully, that information will provide advocates with the ability to report on issues like difficulty in institutions of higher education, in the workplace, or with service organizations based on input from hundreds of adults with ASD. Please check back, as we hope to launch the first of many Adult with ASD surveys soon.

Thank you, Connie for responding to my post. I did visit the link earlier in the day. I forwarded it to many faculty and staff at my college. Perhaps it will make a difference.

Personally, I am still trying to determine how I feel after viewing the video. To hear someone reaffirm the difficulties of ASD is truly remarkable. Maybe tomorrow I will catch up with myself.

I will look for the surveys.

Thank you, again.

Cyndi

I'm a mom of a 21 year old son who was diagnosed with Aspergers at the age of 19. 19! He struggled his entire youth not understanding what was wrong. We have stories after stories, but I'm so angry right now. He has been getting assistance from the state to help him in college training to do what he loves, mechanics. This has been such a struggle. Today, we just learned that they will not pay his current tuition as he's behind or something(??). They tell me to stay out of things, that he has to learn on his own. They want him to initiate conversations and meetings. THIS IS HIS DISABILITY. It's SOCIAL. He gets extreme anxiety and won't pick up the phone. If I don't help him who will? Not the State! Not the schools student disability services. I'm so angry!! These kids need help in the worst way. They need help growing up in each critical stage of life and well into adult hood. If I had the money I'd love to do this all for him but I can't. How do we get people to understand their situations and truly help them? I have to be his advocate or he'll just get pushed aside. I'm so angry! They say, what will he ever do when I'm gone - we'll I'm alive and here, so work with him. Get him through school, help him so he can learn to be independant. Give him the tools he needs. Why does this have to be so hard? Lord help

us.

Hi, Momba, and welcome to IAN.

I think so many parents will completely understand your anger and frustration. It is incredible that, with all the emphasis on early diagnosis and early intervention, higher functioning individuals can wait nearly 20 years to be identified -- passing all the way through elementary, middle, and high school before this even happens. There is still a great deal of education that needs to be done out there, among physicians, therapists, educators, and those working with people with disabilities at the local, state, and federal level. The verbal abilities of these higher functioning individuals all too often blind people -- even those who are supposed to know autism -- to their social disability, and its truly crippling effects.

As various people tell you that your 21 year old should "sink or swim" so he just learns how to manage in the world, they should take into consideration that there are developmental steps involved. If he has missed some, he's not going to be ready to manage in the world. He's a person on the autism spectrum who received no intervention for years.

One thing you might consider is finding a therapist for your son who can help him with social functioning, training him to take on each challenge (like making a phone call) step by step. There is likely a great deal of social learning he has missed because that is the key feature of autism: an inability to naturally and intuitively process social and emotional cues and information. He definitely can improve, but will need some guidance and support.

In the meantime, I hope you will use the articles on our website to help educate those you are working with. There is an entire section on Asperger's syndrome here: http://www.iancommunity.org/cs/about_asds/aspergers_syndrome

You may also be interested in Simon Baron-Cohen's article on very late diagnosis of Asperger's, here: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

Suetois wrote:

Cyberscan (and any other adults or parents of adults with ASDs), could you tell me more about what kinds of things you need to function independently of your parents? I'm asking because I'm becoming more and more convinced that we're going to have to advocate very strongly to make the programs we need happen. I love my son dearly and don't mind the thought of having him live with us indefinitely, but I don't think that would be best for him. I don't think he's anywhere near ready to want to be independent yet, but I'm pretty sure the day will come. And when it does, I want him to have options.

It seems to me that this is a multifaceted issue. There are social things that need to change (e.g., the public needs to understand that Rain Man is *not* the only face of autism). There are governmental/administrative things that need to change (e.g., assisted living needs to be available, and service agencies need to recognize the need to support even many high functioning individuals). And there are personal things that need to be addressed (e.g., learning self-care and basic living tasks).

I'm thinking my son isn't going to be able to drive because he problem solves too slowly and then tends to freak when he finally does notice that something negative is in progress. So he's going to need access to transportation. We live in an area that does have public transportation, but it's expensive to live within walking distance of the various Metro stations, so while that seems like an option, it may not be practical for someone who probably won't have a large income.

He's also probably going to need help solving some of life's more complicated issues--like how to find a dentist or doctor. I don't see him needing constant assistance, but he's going to need someone to turn to for help and advice.

Ideally he'll find a job that offers benefits and that makes allowances for his quirks. I know that's hoping for a lot, but that's my goal for him.

Right now I have him in individual therapy and social skills therapy. I'm starting to give him books that will help him understand what Asperger's is all about. We work on personal independence skills--like how to find things in the grocery store or how to do laundry.

What else do I need to think about? What sorts of things have you found necessary or lacking? Are there organizations out there who are already advocating with any degree of success that I should be supporting?

I really need to educate myself and, just like I knew very little when my son was first diagnosed, I feel that I have a long way to go. Any advice or help you can give me/us would be greatly appreciated.

Sue

What I need the most at this time is an affordable way to go to college. Years ago, it would have been understanding from the neural typical community.

Genie wrote:

I wish I could find more resources in my area. I can't even find an autism support group in my area, let alone an actual program to put him. He goes to the public school, but my son is 4 and high functioning, with a very large and sophisticated vocabulary, so they don't want to put him in an autism class because they say the majority of them or non-communicative and he would certainly lose what he has in a class like that. So essentially they have nothing really to offer him. His main issues are socialization problems. He doesn't like crowds. When we go to the playground if there are two or more kids in an area, such as around the slides, he avoids the area. He was in a communications lab which put him in a room with about 5 or 6 other kids, but aside from the first day asking all of them, "who are you?" he wouldn't talk to them except when the teacher told him to and then he would say only exactly what she told him to say and nothing more, so his socialization skills are no better then when he started. He can stay in the class with them, but he doesn't interact with them. Also, he was at least 2 years younger then the youngest kid in the class. So long as they were not too loud and didn't touch him, he was there, but not interacting with them. He is scheduled to attend pre-k this coming school year, but I don't know how he will handle a class of 20 or so kids, he really doesn't like crowds. Anyway, how can we get these things to come to my area, I know I can't be the only mother in my area with an autistic kid.

FaceBook is a good way to meet other parents and autistic adults. I hate to say it, but the only way people are going to find support is to create their own networks. If you are looking for a support group in your area, try looking online by searching for "autism support group" "Yourcity, Yourstate".

If you find nothing, then if you want a support group, you will have the task of putting one together. Facebook.com is a great way to find other people in your area that are affected by autism. I will tell you one thing, the government is not going to do much of anything for you, me, or anyone else. We have to take care of ourselves and each other.

Just to add to cyberscan's comment about support through Facebook...

There are also sometimes support groups available through the local chapters of the Autism Society of America: http://www.autism-society.org/site/PageServer?pagename=community_chapters

If your son has Asperger's (which is a high functioning and very verbal type of autism spectrum disorder) you might also find some information on OASIS, (Online Asperger Syndrome Information and Support): http://www.udel.edu/bkirby/asperger/

Where does a person go to find post secondary funding for a student? There are some interesting programs for guiding a student to self sufficiency, but they are prohibitively expensive. HELP.