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

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.

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.

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. <g> 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

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.

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.

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

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.

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.

Thank you for the encouragement.

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

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.

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!!!

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.

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."

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!

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.