Latest posts for the topic "Adults with ASD: Where Are They Now? (And What Do They Need?)" recent IAN discussions

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

Connie (IAN Staff) — GMT

In our "Adults with ASD: Where Are They Now?" article, we present some of what is known about the current situation of adults on the autism spectrum. The picture is not always a very positive one. It appears many people with ASD are not able to reach their potential, or to lead the lives they would wish to. As more and more individuals with ASD reach adulthood, what will their biggest needs be? In what areas should researchers and advocates focus their energy in order to help? Share your thoughts and experiences here. :)

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

Brokenhalo — GMT

My son is 18 now and was diagnoised with PDD at age 14 months. Throughout his schooling he has been tranferred 8 times in the public school system. No one seems to have the right program that fits his needs. I always tried to advocate for him but its seems that my wishes fall on deaf ears. Because he never fitted into a right program ever he has been suspended from school about three times in his life. When I went to all of the hearings and all suspensions were dropped due to the fact that he is in special education for a reason, and had been place there by the board of education because they never had a proper setting for him.My worries never end. He is in private school now specialized for autistic children but he is high function child. I've tried shearching for help in outside agencies but I was always turned away for different reasons. Insurance, his IQ is above the boardline limit requirement, or no space, too costly. I can't put him in any programs and I fear that he is missing out on a lot if he spends his life infront of the TV on video games.He has no friends and little interaction with kids his age. Im a single mom with 2 kids my other child is a girl (13). She as well has trouble understanding her brother. I've been alone in caring for my kids and the pressures of it can get the best of me and I break. I pray for an answer for his sake. I worry about his future if he can live independently work and live alone. He will always need someone to care for him.

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

Suetois — GMT

This report presents a rather discouraging picture. Lovely. You would think that Great Britain, with it's socialized medicine etc., would be doing a better job of providing services. I suspect that services in the US are even more limited. What really concerns me is the fact that there aren't enough options to go around to cover the needs of people with older diagnoses. The coming wave of children/young adults with more recent diagnoses isn't likely to make the situation better. I have some experience dealing with the school system and have felt that my son (nearly 17yo, with AS) has been falling through the cracks there because he's too high functioning for the standard autism program, and too low functioning for general ed. without a lot of support. At least, however, there was something to work with--a starting point. Now adulthood is rushing at him. He's not capable of navigating his way through the system, so I'm going to have to do most of that for him, but I don't have a very good idea of what needs to be done and how to do it either. I hope we'll eventually be able to find some sort of appropriate assisted living and satisfying employment for him. Realistically, though, we'd probably better fix up the basement. I just hope we're not back here when I'm in my 70's, wondering what's going to happen to him once we're not around anymore. It's going to take advocacy and awareness to prevent that from happening, though. I'm glad some research is being done. That's the first step. We're going to have to be able to define the magnitude of the need and describe what adults with ASDs need--and we'll need more ammo than just our personal opinions. Sue

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

cyberscan — GMT

I am autistic myself, and at 40, I wonder what will happen to me when my family is gone. I currently live at home with my mom and step dad. I am hoping that within a few years, we will be accepted as contributing members of society. We have to have a way of educating the neuro-typical world about our specific needs and talents. In my area (Northwest Florida), a new autism center is being opened in a few short weeks. http://www.autismeducationcenter.net/ is the current website of the Autism Education center. This center is being run by a nurse who has 2 profoundly autistic sons and two others on the spectrum. She believe that she may be on the spectrum herself. This lady sounds for real! It looks like this center will not only educate people like me, but will also educate the general public about us. I believe that educating the general public in a positive way will do away with the "Rainman" stereotypes most neuro-typical people have about autistic people.

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

Connie (IAN Staff) — GMT

Cyberscan, it is so encouraging to hear about programs like the one you describe in Florida. I have just heard about a new program for adults with ASDs in the Baltimore area, as well: the Towson University Center for Adults with Autism Spectrum Disorders. Their materials state: "The Center was established in February 2008 with a generous donation from Therese and Douglas Erdman, in order to form a link between the university and the community of adults with autism. The goals of the Center are to facilitate outreach and programming for adults on the spectrum; resources for professionals, families, employers, and the general public; and education, training, and research opportunities for students and community professionals, in order to help adults on the autism spectrum lead fulfilling and productive lives in the community." I hope we are seeing the beginning of a new wave of awareness and support for adults with ASD. :)

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

Suetois — GMT

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

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

Dawna — GMT

The things I need related to my son are probably because he was not dx until he was 18. How do I make appointments for him when he is an adult? Do I dial the number, have him tell them he gives permission for them to speak to me? My son has a very low reading level. He has practiced this past year on the Dept. of Motor Vehicle web site practice tests for getting his driving permit. The computer reads to him. He can choose a b c ect. How do I get accommodations for him to actually take the test, or find out if they even exist? In California - hopefully this will help someone, I contacted the local State Dept. of Rehabilitation. Once I have a copy of his report from the ASD clinic they will begin the intake process. They will pay for vocational training and write an Individualized Plan For Employment.

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

Connie (IAN Staff) — GMT

Hi Dawna. :) It sounds like you are on the right track. Individuals over 18 cease being entitled to protection and services under the Individuals with Disabilities Education Act (IDEA) and have to prove they are eligible for adult services: vocational rehabilitation, disability, etc. There are often workshops on how to navigate these new bureaucracies offered at autism conferences, parent advocacy meetings, and sometimes even school districts that are preparing their high schoolers for the transition to adulthood. I imagine that in California the Regional Centers (which are the state organization responsible for individuals with autism) might also offer this type of thing. It is worth investigating, as the process of applying for services can be very complex and differs from state to state. Many of us at IAN will soon be in the same boat - several of us are parents of teens on the spectrum -- so we share your concerns about these issues. :)

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

Dawna — GMT

Thank you for the encouragement. We are waiting for a call back from Regional Center to start the intake process.

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

Genie — GMT

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.

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

aspergers_college_grrl — GMT

I am 19 yrs old and I have Asperger's. I was diagnosed at 13. Because I have a high IQ but a low EQ, there's a debate as to wether I have PDD-NOS or even if I'm just a normal, depressed teenager. I have tons of phobias that I'll probably never get over---stupid things like being afraid of the vacuum cleaner and being afraid of the fire on the stove. I have so many social problems I don't where to begin... I can count the number of friends I have on one hand. In 3 semesters, I've only taken 18 college units...and I'm supposed to get a degree?! I go broke every month just paying rent, utilities, and groceries. I feel like the world is expecting me to grow up so fast, and I just want to put it to a halt and be a kid for as long as possible. All these responsibilities are killing me, just stressing me out! Day in and day out, I've got noone to help me, noone to turn to...it's driving me crazy!!!

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

Connie (IAN Staff) — GMT

Hi aspergers_college_grrl, and welcome to IAN. :) I'm so sorry to hear how difficult you are finding the college environment. We have had some other discussions on these forums about exactly what you are talking about: how hard it is to create a situation that's just right for young adults with Asperger's or high functioning autism... to balance the needs of a person who is ready for more intellectual challenges, but is socially/emotionally behind their chronological age. I hope you are able to access any available help at your college, from counseling services to whatever support the Office of Disability Services can provide. In addition, you may want to see what support groups or other resources are listed by our national autism advocacy organizations. The Autism Speaks resource listings are here: http://www.autismspeaks.org/community/resources/index.php The Autism Society of America (ASA) resource listings are here: http://www.autismsource.org/ ASA has local chapters, as well, and some of them may have some meetings or events focused on adults on the spectrum: http://www.autism-society.org/site/PageServer?pagename=community_chapters There are also many communities of adults with ASD online. We are working on the launch of an "Adults with ASD" version of IAN. We hope to gather information online from adults with ASD all over the U.S., the better to provide researchers, advocates, and policymakers with the data they need to improve the lives of adults on the autism spectrum.

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

quirkymom — GMT

Hi everyone. I am so glad there is an easy to join chat site for adults with AS. I am one of the lost generation. Born before the 1980's went through all my school years and twenty's with either no dx or being called mentally ill. My mother began working with autistic children in the mid 2000's. The more she learned and thought back over my childhood, she started suggesting I be tested for AS. That didn't happen until April of this year, when I'd gotten physically sick on an anti-depressant and told my Dr. I insist on being re-diagnosed. The dx doctor was a specialist with adults on the ASD. That day was like waking from a dream. I finally could say, "I'm not actually alone. There are others who are quirky like me." That all said, I managed to make it through with a supportive family who never really made excuses for my quirks,(they just helped me adapt them to my benefit.) and one single close friend who wouldn't let my odd behavior scare him away. So many of you hit the nail on the head. With the right services I myself have grown dramatically in the ability to interact with the neuro-typical world. I'm not ready for social clubs or to throw parties just yet, but I can attend church, go to the grocery store and talk to people without having a melt-down. I really feel my future is bright. I'm going back to college this fall to begin an AAS in paraprefessional education. I want to offer kids like me the chances I didn't have. Far too many of the para's that worked with me as a middle school kid, had no experience and no understanding of my condition.(they were tough sometimes but I forgive them they were neuro-typical). That and the fact that my 2yr old daughter was just diagnosed ASD, I'll be better prepaired to navigate the school system so she can get all the help that is out there to make her the best she can be. Take heart, many years ago people like me were locked away in institutions, now some of us are making a difference, so that someday we will all be accepted in a society where "normal" is an archaic word. A word that has been replaced with "human being."

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

Connie (IAN Staff) — GMT

Thank you for your post, quirkymom, and welcome to IAN. :) Hearing about the successes of adults on the spectrum is so important for individuals with ASD, as well as their families. Thank you for your encouraging story!

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

Y/Ynot — GMT

Case study To date, the system has invested $250,000.00 dollars into my son's education.It is our duty, both to him and society, that such financial investment be reimbursed with compounded interest. I am an Ivy League educator 20 years in the frontlines passionately wrestling "maximum returns" from special-education dollars. As a graduate student at Teacher's College Columbia University, I did not anticipate the personal application of theory to practice. Admittedly my inspiration and motivation today is a God-given labor of love and advocacy for a child on the social fringes whose entire education through high-school graduation required extensive IEP services. I have utilized "due diligence", making certain the system not squander those education dollars. Never subordinating ability to its' "dis" preface. ((The stories I could share!)) Never acquiescing to a, well-meaning yet misguided, culture of patronizing altruism that often grossly underestimates individual potential. Battling at every step along the way, the insidious "soft bigotry of low expectations". Today, "S" is a college junior on academic scholarship majoring in mathematics and technical writing. Sounds good, but the financial returns to society are bound to gainful employment. If we fail to enable and sustain employment, our returns will bankrupt. Consequent sequelae of negative outcomes would further tax both the individual -(depression/mental health), and society (lost taxable income and life-long system dependency). Unemployed = Uninsured = system dependent. As an adult, "S" has fallen off all disability support service radar screens. By default, "crisis-intervention" is the current denial-practice-mode servicing high-functioning adults on the autistic spectrum. Autism is real, even when early effective interventions and family supports make the disability "invisible" to the lay public. Other "invisible" afflictions such as diabetes are not ignored; to do so would invite visible and costly complications. For autistics, social assimilation, frequently requires external initiation and a "set-up for success" scenario. Without supportive services the gap between academic preparation and viable employment may remain unsurmountable. Studies demonstrate the high rate of un and under-employment for this disability demographic, despite high levels of academic achievement. What waste to lose focus on outcomes so near before we reap rewards. Truly the pro-active expenditures would be infinitesimal compared to re-active losses.

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

mlstuart1 — GMT

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.

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

onelisa — GMT

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. :?:

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

Connie (IAN Staff) — GMT

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/

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

Gemini — GMT

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.

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

Suetois — GMT

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.

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

Connie (IAN Staff) — GMT

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.

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

Cyndi — GMT

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

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

Connie (IAN Staff) — GMT

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.

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

Cyndi — GMT

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

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

Momba — GMT

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 :x us.

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

Connie (IAN Staff) — GMT

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

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

cyberscan — GMT

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.

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

cyberscan — GMT

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.

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

Connie (IAN Staff) — GMT

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/

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

Ellen B — GMT

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.

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

Connie (IAN Staff) — GMT

Hi Ellen B, and welcome to IAN. :) I'm afraid I am no expert on how to obtain college funding for a student on the spectrum. I do believe, however, that there are a number of scholarships specifically for young adults on the spectrum. The Organization for Autism Research, for example, has granted these in the past: http://www.researchautism.org/news/otherevents/scholarship.asp Depending on your son's age and situation, it might be worthwhile speaking with a guidance counselor or transition facilitator at the high school level who might be more knowledgeable about what might exist for a student with ASD who was hoping to attend college. In some states, students who are on Disability receive reduced (or free) community college tuition. Community college staff, especially those who work with students with various disabilities, might know about various opportunities. Another thought is the Office of Disability Services at any college. Most colleges have one of these, and the staff there may also have some knowledge about this. For example, if your son was applying to a local state college, I wonder if the Office of Disability Services there would have information about scholarships for students with various needs, or any kind of assistance. Even if they didn't, they might have some idea of other organizations to turn to. I'm sorry I don't know more about this, but hope this information proves helpful.

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

Brendan — GMT

I am a 31 year old male with Autism. I live fairly independently with an aide that checks in and helps with different daily skills. I am at a point in my life when I would like to date and eventually marry and have a relationship. The problem is, it is very difficult to meet suitable people let alone get aquainted so they can see the many positive attributes I can offer and get past the lable of autistic. Any suggestions, or outlets that you might know of would be appreciated. I live in a smaller city in central New York state. Thanks Brendan.

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

Connie (IAN Staff) — GMT

Hi Brendan, and welcome to IAN. :) I think you are bringing up a common dilemma for many high functioning individuals on the autism spectrum: having a difficult time finding a romantic partner who will understand autism. (Of course, neurotypicals also often struggle with how to find a partner, as you can see by all those dating service ads you see on TV.) I do not have any easy answers, but I can suggest: 1. Turning to books that have been written about dating or romance and autism. Some of the major autism-focused publishers, such as Jessica Kingsley or the Autism Asperger Publishing Company, do have books like this. For example, see "Autistics' Guide to Dating: A Book by Autistics, for Autistics and Those Who Love Them or Who Are in Love with Them": http://www.jkp.com/catalogue/book.php/isbn/9781843108818 2. If you are interested in meeting others who are also on the spectrum, you might check out local support groups or social groups for adults on the spectrum. There is more and more focus on adults and their needs in the major national advocacy organizations. For example, you might inquire at the local chapter of the Autism Society of America: http://www.autism-society.org/site/PageServer?pagename=community_chapters 3. You might look at what is available online. (Of course, contacting anyone you meet online requires caution, but I have seen dating sites for people with autism beginning to appear on the web.) I cannot vouch for the quality of the site, but here is an example: http://www.aspieaffection.com/ 4. Sometimes, adults with autism need a mentor or guide to help them navigate complex social relationships, such as those at a job or in a romance. I know from speaking to adults that some do go to therapy for this purpose. The therapist then helps them learn to interpret others' social signals, and know how to respond. When is someone interested in them, and what is the appropriate next move? How do they judge if someone is a good, trustworthy person and not a dangerous one? Etc. 5. If you have an intense interest or special topic, that can sometimes help with relationships. Finding others who share your interest is a way to begin meeting people who you have something important in common with. These are just a few ideas. I invite others to add theirs to the list!

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

annalise — GMT

I just registered today, Oct 16, before looking at the discussion board. If I had known there was little to no interest in adults with ASD in the IAN project, I would not have bothered registering. Frustrating to read (a few years back) in the section where the dr explains the project replies to a person asking about this (nothing re: adults ASD). It sounds like at the time he had teenagers and well, when he his kids are adults, then he'll have more interest in it. I am frustrated and highly annoyed that all the research is going to small kids and I am supposed to do what for my 23 yr old son?? My son has Aspergers. He is 23 yo, graduated from public hs, taking all regular classes, with a high GPA. In the past 4 years, he has attended 3 years of college. He has paid for all of his tuition, books, etc...himself by working fast food since age 16. He got no funding, no financial aid. He quit college this fall, saying it was just too hard. The disability dept (state U) has been a nightmare to deal with since day one. They have no clue what Aspergers is. He failed Oral Communications class and was put on academic probation. He just gets more and more withdrawn as the years go by. From what little I could see at college, he was not treated well by the other students. (We live about a mile from the college so it was handy for him to live at home) He does have his drivers license and a car he bought himself. He continues to work fastfood as a cook so he doesn't have to talk to anyone. He talks to no one in our family except our dog. He has never had a friend in his entire life. As of Jan 1, we will lose his medical/dental insurance from my husband's employer, since he is no longer a student. His job has no benefits. He goes to work and plays video games. That's it. That's his entire life. I know he is intelligent-he passed 3 years of college as an accounting major. Yet he is flipping burgers for $7/hr. He has two sisters, one older who lives out of state. One younger who goes to this same college. Neither have ASD. He used to be best friends with his younger sister up until middle school, now he no longer talks to her either. I am very sad. I don't know if anyone will read this, but if you did, thank you. annalise

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

Connie (IAN Staff) — GMT

Hi annalise, and welcome to IAN. I'm so sorry to hear what a tremendously discouraging time your son is having. I know there are so many parents, especially of teens and young adults, who are either going through this or worrying about going through this. You are right that there has been a focus on children in the autism advocacy community, but that is beginning to change. Here at IAN we created our first Adult with ASD questionnaires and began to invite adults with ASD to join IAN Research because of the input of adults and their parents. By the way, if your son is under your guardianship, then you are eligible to participate in our online research project; if he is independent, then he is himself, if he is interested: see http://www.ianresearch.org. Other organizations are also beginning to focus more and more on adults (which makes perfect sense because parent-advocates are the force behind these...and their children are growing up). Both Autism Speaks and the Autism Society of America are beginning to do more with a focus on adults, and I hope very much that there will be more in place for adults with ASD soon. (I myself have an almost 15 year old with Asperger's, so I share the concerns of many parents.) Adults are organizing themselves as well. The website http://www.wrongplanet.net is one place people with ASD interact. The Adult Self Advocacy Network (ASAN) is one group organizing adults with an emphasis on giving adults with ASD a voice in all decisions or policies made that will impact them. Some Autism Society of America chapters have support groups for adults and/or for parents of adults. Another example of some of the good things happening: the Towson University Center for Adults with Autism Spectrum Disorders: http://www.towson.edu/chp/caasd/ Due to our great interest in adult-focused issues, I will be attending the upcoming National Town Hall, "Advancing the Futures of Adults with Autism (AFAA)": http://www.afaa-us.org/site/c.llIYIkNZJuE/b.5063863/k.BE3C/Home.htm As you will see looking at their website, many people are beginning to advocate for adults in terms of jobs, supports, living situation, health care, etc. I hope this information proves helpful, and gives you hope. One thing is certain: you are definitely not alone. Adults with ASD and their families and supporters are coming together to advocate for a better situation for adults on the autism spectrum.

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

TS — GMT

I am 40 yrs. old and was diagnosed with Autism at the age of 3 yrs old. I was sent to a special day school for a year. After attending that school, I was mainstreamed into public school. As each year passed, I excelled academically and my delayed emotional / social development was never discussed in my home except in occassional conversations. By Junior year in high school at the age of 19 yrs old, I basically had a nervous breakdown because I was expected to perform as a high honors student but no one realized the extreme pressure I placed on myself to excel. Also, I believe that I was abused emotionally and witnessed physical abused of other children in the special school. I never told anyone for fear of retribution or being returned to the school. I am fortunate, I function relatively well in society. I believe that I am oversensitive and often misunderstand social cues. I have generalized anxiety and do not view the world as a safe place for me.

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

Connie (IAN Staff) — GMT

Hi TS, and welcome to IAN. :) Thank you for sharing your story with us. I am so sorry to hear of the difficulties you experienced, including emotional abuse and your nervous breakdown in high school. I am very glad to hear that things have improved for you, and that you are doing so well, although I am sorry to hear how anxious you feel. I have heard many adults with an autism spectrum disorder share such feelings. I wonder how much of that has to do with actual anxiety caused by some kind of anxiety disorder, and how much is simply the result of a lifetime of feeling "different" and not quite fitting in. Many people describe bullying or just feeling alienated. Lately, I have observed some adults with ASD overcoming this by grouping together - meeting in support groups or social groups or advocacy groups. Listening to teens on the autism spectrum speaking on a panel recently, I heard some similar accounts of difficulties in high school. One boy said he fell apart in the 9th grade, becoming completely unable to function. He did not have an ASD diagnosis at the time, and no one was working to support or accommodate him. After his diagnosis, he said, everything changed for him. The whole situation made more sense to him, and he was able to get support and help. Considering when your high school experience took place, it is very understandable that you would have been left to cope without any help or support. I hope the situation is better for most teens with ASD now.