There is no such thing as an Autistic Adult

Autism only occurs in children.  Because it is a childhood disorder, as an autistic child leaves adolescence behind, the symptoms of their autism will gradually decrease and disappear. By the time the person is an adult, they will be completely Autism-free. They will have no need for speech or physical therapy. No need for mental health services. They will be fully functioning adults – ready to get a job, go to college and begin their new life without autism.

Notme!

Of course this is ABSOLUTELY, 100% NOT TRUE, but this is something I am told every day by the media and organizations that claim to “support Autism.”

When I first suspected I had Asperger’s, I immediately began looking for more information about a diagnosis and support. A google search of Autism and Jacksonville, FL was hopeful. So many resources! CARD (Center for Autism and Related Disabilities). The HEAL (Healing Every Autistic Life) Foundation. Jacksonville School for Autism. The Learning Tree. There is even an annual Autism Symposium every year!! Surely I hit the Autism Support Jackpot, right?

Wrong.

The Autism Symposium was laughable. The folder they gave us talked about the speakers and their massive qualifications, but the packet contained nothing useful for a person WITH autism. When I asked the woman in charge if she knew of any resources for adults, she looked at me as if I had just asked if I could pull an alien out of my eyeball. She actually said “Did you Google it?”  *Sigh*. Thanks for that illuminating advice, princess.

Although this was an “Autism Symposium”, they didn’t list any kind of resources at all. The speakers spoke at a collegiate level about the genetic makeup and studies being done to identify the “autism gene.” They spent HOURS focusing on ‘what CAUSES Autism’ at the genetic level (eyeroll). Another “how can we cure ‘em” symposium. I didn’t care what *causes* Autism. I wanted to know what to do with it. I wanted to know more about it but not on a cellular level. The lights were too bright. The speakers were too loud.  For an “Autism” symposium, it was NOT sensory-friendly.  Every person at my table was disappointed with the lack of useful information given.

I kept trying.  I called the places from my Google search. Each place only works with children. Each place I called referred me to the next because they did not know of any services offered to adults. Referral after referral led me on a wild goose chase until the circle was complete. They were all referring me to each other – each apparently unaware of the services the other was offering. It was disappointing and disheartening.

I asked “What happens to kids after they turn 18?”

“They age out of the system.”

So… they DON’T need services anymore? They’re somehow amazingly cured?

No. They are just denied help.

services

They are denied help at a time in their life when they need help the most. At 18 yrs old, children are graduating high school and getting ready for college. They are transitioning from dependent to independent living for the first time in their lives. They might be going to college – away from friends, family, and their support system. I cannot think of a worse time to rip their mental health services away.

After failing to find an “autistic support organization” that helped Autistic adults, I tried psychologists. Even though I have very good insurance, I was once again told “We only work with CHILDREN with autism.” Or “We don’t accept insurance. You would have to pay out-of-pocket” (at the cost of at least $100 an hour.)

If I couldn’t get a psychologist to speak to me with my Blue Cross insurance, how will my autistic brothers and sisters get help? According to the US News and World Report, over 50% of people with autism are unemployed. FIFTY percent. They are most likely on disability. They probably have Medicaid for their health insurance. If psychologists aren’t taking Blue Cross, you know they aren’t taking Medicaid.

So what happens when Autistic kids turn into Autistic adults?

Nothing.
Absolutely nothing.
No support. No services. No autistic organization reaching out with social skills/employment skills.
Nothing.

What really chaps my hide is that so many of these kids are brilliant. They could flourish in college and excel in the real world if it weren’t for their social anxieties. Instead, they often can’t handle it. They feel much safer at home, surrounded by friends and family. They drop out. They remain dependent. They may end up on disability and Medicaid instead of learning the social skills they need to function in the working world. Instead of graduating college, our autistic young adult college drop-out is probably going to be on disability for the rest of his/her life (60 more years) because there were NO services to help him/her transition into independent living. At the rate of $721 per month, It would cost over $500,000 to pay disability for 60 years. Surely it wouldn’t cost 1/10 of that to provide mental health services.

I was lucky. I found another woman with Asperger’s who was a counselor.  Insurance was not accepted, so I had to pay the $40 a session out of pocket. Thankfully, I was able to afford it for a short while. She helped me understand how Asperger’s affects me and those around me. She pointed me in the right direction.  I learned most of what I know about Asperger’s through the internet from Google searches and online support groups. (Thank you Facebook.)

Unfortunately, online is NOT enough. Aspies struggle with interpersonal communication. Although it is EASIER to communicate from behind the monitor, it doesn’t teach us the skills necessary to speak to others in person. It doesn’t teach customer service. It doesn’t help us with the dreaded eye contact. It doesn’t teach us to function in the real world.

We need more.

Autistic kids grow up to be autistic adults and we are failing them.

So what am I doing about it?

I have emailed ASAN (Autistic Self Advocacy Network) to start a chapter here in North Florida.

I am going back to school this fall as soon as I figure out which degree would help me reach my goal of being able to provide counseling to other autistic individuals: A Master’s in Social Work or a Master’s in Psychology. I already have my Bachelor’s in Nursing.  I’m doing my research on this now.

What about you?  🙂

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66 thoughts on “There is no such thing as an Autistic Adult

  1. This is an excellent post. My 30 year old cousin has been running into this roadblock for years. He has SOME support, but not enough, and even the support organization he works with gets frustrated by the lack of support they get. May I post a link to this post in a website I’m building – It’s for parents/anyone who want to know more about autism and is a doorway to AUTISTIC voices/bloggers and neurodiversity friendly parents/professionals. The website is under construction but the facebook page (Autistikids) is up and running – full of links to the same type of posts. I can be reached at autistikids@gmail.com if you have any questions. Thank you!

  2. Thank you. I have run into the same problem. People thinking that it’s impossible, because I managed to succeed in high school and do ok Indy job. People unwilling to even so much as consider that Aspergers might be the answer to all the other issues I do have. Because I seem to do “ok” and I can be considered a functioning adult. It is frustrating. Thank you for speaking up.

    • You are welcome. ❤ I find it so frustrating that the resources out there think that people with Autism no longer need support when we become adults. First jobs, Dating, Serious relationships, Marriage, Children… all of these things happen when we are adults. Of course we still need assistance. ❤ People do not realize how much we struggle just to be "OK"

      • I have not even been able to get an official diagnosis because I seem “ok”… And with the new diagnostic changes, when I have found someone even slightly willing to consider it a possibility, the response I get is that they’re not going to bother because they don’t think I would be able to be on the new scale and yet the old criteria fit so much I deal with every day… At best it seems like I might be able to get some sort of social anxiety disorder, but I know it’s more than that. I’ve just forced myself to work around the smaller issues, but even that doesn’t work all the time. So not only is the support lacking, but I think the capabilities for those of us who never did receive childhood diagnosis seem to have been reduced too… Especially in the “milder” cases.

      • That is so frustrating. What they fail to realize is how much WORK it took for you to appear “ok”. Like you, I have forced myself to work around issues. Forced myself to keep moving ahead. Just because I can do it doesn’t mean it isn’t hard for me. Some days it feels impossible.

      • I’ve had friends straight up tell me that they just things I have weird quirks and if I actually tried, I’d be fine socially. Anyone who truly knows me knows that I struggle socially. They know that I can easily get overwhelmed by things, particularly conversations. Not participating in a conversation, but multiple conversations going on all at once. When you’re picking up on everything from literally every conversation going on all around you, it’s so easy to get it all confused, and the next thing you know, you’re replying to someone else’s conversation entirely, rather than your own. Never mind the attempt to be in conversations and then just blurting out something as if filters don’t actually exist. Even though you know they do and you are usually ok at figuring out when something is appropriate or not. The thing is, all we are really looking for is answers and with those answers, solutions. But they still say that there’s no way I could possibly have something like Aspergers, because I’m “too intelligent/smart”… In saying someone looks “ok” and doesn’t meet the stereotypical traits society has applied towards a label – in this cause, autism – that person who does that label applying has not only denied the other person actually has something going on, they’re denying their own ability to actually learn about that person. And they’re denying that person the solutions that they’re looking for.

  3. “Unfortunately, online is NOT enough. Aspies struggle with interpersonal communication. Although it is EASIER to communicate from behind the monitor, it doesn’t teach us the skills necessary to speak to others in person. It doesn’t teach customer service. It doesn’t help us with the dreaded eye contact. It doesn’t teach us to function in the real world.”

    Less and less I see “a condition” when I read your words. More and more I see one human being writing about being a human being. You bring an eye for detail, a compassion for being a living soul, and an energy to keep on pushing. I was reading this post and thinking “shy” … “introvert” … “fearful” … and more and more “labels” living human beings take on board as they walk. Yet your words are not those of a victim. They are words of a very normal loving frustrated not giving-up human being. Coping with – not chasing a take-it-away-magic-pill. Embracing rather than fighting. That is universal. That is something all of us can do if we allow – whatever and however we struggle with being who we are and what we are.

    (and I hope that does not undermine or diminish “the fact of” aspergers – nor your personal journey)

  4. I find it very sad that services are being planned for adults BUT NOT to help support and transition them to achieve their potential – instead the plan is to “to provide residential group homes as adults with aspergers need this”
    As an aspie I couldn’t imagine anything worse, visitors to our home need to leave after a max of 2 weeks as I want my (oops our sorry partner) home back!
    You are right the potential of so many is thwarted because of short sighted box ticking and regulations. I work at uni and in schools, I did some research about teaching kids on the spectrum and wrote a text book, I do workshops and stuff and the theme is always the same – kids on the spectrum have huge potential – find out their sensory profile, their interests and work with that to help them achieve that potential.

  5. Hi PensiveAspie. May I suggest you start a MeetUp for adults with Asperger’s? I founded a social support group initially aimed at teens and young adults in Ventura County, CA. It now includes older Aspies as well. http://www.vcasap.org. It’s been going strong for almost 8 years. In Los Angeles, a man in his 30s with Asperger’s started a MeetUp for others with Asperger’s or High Functioning Autism. They meet several times a month. With a MeetUp, even just once a month for coffee, you could network and discuss your issues with other adults with Asperger’s.

    And I agree. There are few resources for adults on the spectrum. Children grow to be adults and still need services. You might also join ASAN, an advocacy group for people with autism.

    Best, Troy

  6. sorry can not take this serious because some people aren’t professionally diagnosed as an adult why would they diagnose it in an adult if it only their in children ? my boyfreind is 23 he has only just been diagnosed and he defenitley not a kid im 21 i still suffer all the same anixiety attacks as i did when i was little with it and the same hate of noise and the overwhelment when meeting lots of new people it certainly not dissapeared for me

  7. agree with you it not true cant beleive someone would even say that sorry the last comment seemed like it was attacking you i didnt mean it i not so good with stuff

  8. England is making progress on this! We are fortunate to have The Autism Act and the Adult Autism Strategy for England with the update recentky published and responsibilities identified. I urge you to be inspired and be encouraged by what the future may hold. One day, the prejudice and intolerance to difference now so prevalent will seem as outdated and archaic as racism, sexism, agism etc. Keep the faith!

  9. Excellent blog post! I was finally diagnosed with ASD at the age of 43. Wow. I went through so much because of this, all my life, and no, it didn’t just ‘go away’ when I became an adult. If anything, I could have used MORE support when I became an adult because of the new level of expected responsibility that came along with it. Somehow, I managed to survive, to take care of myself, to not completely go under- but not without an enormous amount of struggle and frustration, which continues to this day. I sometimes think it is nearly a miracle that I have done what I have with my life, that I have not ended up dead or in an institution. My family would look at me and wonder, why is she not able to function like everyone else, when she is so smart? Why does she still live in makeshift apartments with revolving-door roommates?. Why doesn’t she have a career or a car or a stable social life? Why doesn’t she meet a nice guy and get married? Why does she keep company with marginal people? Why does she choose this lifestyle? The ‘lifestyle’ is not a choice. It is who I am- a marginal person, an autistic person, trying to keep afloat. If I had had understanding from people, and access to services, I might have been able to have a lot more stability in my life. Instead, I was blamed for the instability. My close friend is also undiagnosed autistic, I am sure. He has a genius-level IQ but he cannot take care of himself. There is no help for him. There is no organization that will recognize his problem for what it is and get him on his feet and give him the support he needs. So I watch him struggle, year in and year out, and I take him in from time to time, when life has brought him again to homelessness, illness, and the brink of death. He’ll have a shower and some rest, get his health back. But he won’t stop being autistic. He won’t just suddenly be able to take care of himself now because he is clean and has nice clothes on. Autistic adults DO need help.

    • The other problem we face is one you touched on: as we get older, we learn more coping skills. We’re better able to mask our Asperger’s and that can lead others to believe we do not need help. We still need help. We’re just better at hiding it. We have to. We’re victimized when we don’t.

  10. I agree about the lack of information at symposiums. I went to an autism conference a couple months ago and it was completely focused on children and not very helpful or informative for someone living with autism. I think the people that attended the conference with me learned more about autism from talking to me than they did from the speakers.
    I started looking into what kind of job I might want to go into in the future and due to the lack of autism help for adults, I’m leaning towards setting up my own practice for adults on the spectrum. Of course, that’s still 6 years or so down the road, but hopefully the kids growing up now will have more help than we did with the transition to adulthood.

  11. My daughter is an Aspie. I have to say that her college was actually very helpful. They have a disabilities department that knew all about Asperger’s and were willing to help her with just about anything. She was able to have a service dog in her dorm room, she got some free on campus counseling (a certain number, then there was a cost), she could go to the disabilities dept at any time and ask for help, and they were willing to help her transition to ‘the real world’. She went through a period of pretty severe depression related to being an Aspie and her social anxiety, which is when she used the counseling. She’s now working full time as a special-ed para in an elementary school an hour and a half from our home, I’ll be honest – we weren’t sure she’d ever be able to move away from home, but she has – supporting herself, buying a car, and with a couple close friends.
    When she was first identified, I did all the research because she was the first in our town/school district. We now have a son who is nine that is also an Aspie and it’s so much easier to get services for him. I WANT to know what causes autism (I have always believed it’s genetics, and now they have found that’s true), because I’m a firm believer that knowing the cause can only help the treatment.
    My daughter attended a state university – they are required to have a disability department, although it may be called something else. They should be able to help during enrollment, classes and with transition. If not – COMPLAIN.

  12. Great piece!

    The lack of support for autistic adults is a real problem, but I’m proud to say I work for an organization that is dedicated to adults on the spectrum, of which I am one. 🙂

  13. Great post. I just wanted to chime in–unfortunately, all those unemployed adults probably DON’T have Medicaid. Medicaid is for children, the elderly, and the disabled. Of course, most of these autistic adults aren’t officially ‘autistic’, let alone ‘disabled’. They might be able to get medicaid if they’re very lucky, but they’ll be required to join a work program, and to go to job interviews, and of course no allowances are going to be made for their autism in the work program. If they have trouble driving, or interacting with people, or any other problem associated with autism, tough luck.

  14. Thank you for this great blog! This is why I have chosen to work with the young adult population – especially the high functioning. They are abandoned by service providers and some really don’t know how to help.
    Laura Pratto, MFTI
    HB, CA

    • Are you in Huntington Beach? I am in north San Diego county. My husband was just diagnosed with Aspergers at age 68. Our counsellor is a very new counsellor and we need someone who really understands Aspergers. If you have any resources, I would appreciate it.

      • Bobby ~
        If you don’t mind coming to Huntington Beach once per month or more I can work with you and your husband. 323.314.1715 for appointments. Cash only. Sliding scale available.

        Check out my Pinterest Boards. Lots of great resources.

        Also follow me on Twitter where I post all things related to family life with individuals with disabilities.
        @Laura_Pratto

        Warm regards,
        Laura Pratto

  15. I’m in England, same problem.
    I was severely effected as a child, but they didn’t realise it was autism (I’m female, and a childhood abuse survivor so they thought that was to blame), I was lucky enough to be mainstream schooled…but they didn’t know what to do with me. I had a speech therapist and was constantly in and out of special ed classes because although I struggled with language and group work I was just too smart. Special ed classes were useless for me.
    As an adult work improved my autism immensely, I was passable for NT…but then I lost my job, over the last six years of unemployment I’ve been regressing. I’ve started struggling with anxiety, a phobia of phones, sleeping problems, and executive functioning issues.
    I attempted to seek help but in UK if you’re autistic you’re sent straight to the mental health side of the NHS – I needed help with executive functioning, so mental health was of no help. I saw five different therapists and not a single one knew anything about autism…let that sink in, ALL autistic people are sent to mental health teams, both those with mental health issues and those without, and not a single therapist knows the first thing about autism. We even have a law in place to say these people should get training on autism (not good enough, they need to learn what it is to be autistic from is, not clinical descriptions). Obviously they couldn’t help me with my executive functioning issues, so I’m stuck. The therapist I saw told me maybe I should look for local support groups (I was committee member for the local group) or search on google for self-help. Awesome.
    I will only improve once I’m in work again – routine, reduce stress of living in poverty, regular social interaction – but that can’t happen without my having some sort of support to overcome my problems. No support means I’m stuck.

    • That stinks. I am so sorry that this is happening to you. We need more autistic people working as therapists. I truly believe that we can do everything in our power but we will often only be an imitation of NT behaviors. For us, they aren’t natural. They are learned. The same is true in reverse. NTs (Neurotypical) people can read everything about Autism. They can have a friend with Autism. A brother. But unless THEY have Autism, they can’t *really* understand what it is like.

      You are brave to keep searching for the answers. Like you, I keep hoping to find that golden ticket that is going to make it all make sense. I’m still searching. ❤ You're obviously perceptive and intelligent and that's a lot more than some people have. Keep on building yourself. ❤ I hope good things are coming your way.

  16. (I posted this on my G+ account linking your fantastic post.)

    As the mother of a child diagnosed as an adult who is both an intelligent and “high-functioning Aspie” this post really hits home.

    My son was dx’d at the age of 20. He finished high school, not without a good deal of anxiety is Sr year (which went unrecognized by us as such). He was accepted to a great college with a great financial aid package. He struggled mightily his first year and we had no idea why…he was clearly intelligent.

    At the end of his first year at the suggestion of a counselor at his former school he came home and was tested for and dx’d with Autism. He didn’t go back to college. Between his executive function issues, anxiety at not being able to keep up with tasks well within his intellectual ability and dysgraphia on top of it all, college was a great challenge. Ask him anything verbally and he can give you a well-reasoned answer. Ask him to write it and you will likely never get an answer.

    My son is fortunate,
    or will be,
    I hope some day.

    He appears to be gifted in computer programming and he likes it. At his college it was the one class he excelled at, so much so that he never had to take a final.

    But there is a large obstacle in front of us/him- how do we find a path to actually GET him on a productive path given his challenges as an Aspie?? I wish I knew. He needs services not because he can’t do things, but because he needs to learn HOW to do certain things and manage his life and his anxieties in the best way possible, taught to him by people who have a depth of knowledge we do not. One local center told us he didn’t qualify for their services because they were confident he could learn the things he needed to learn. Well yes, of course he can…but HOW? Who’s going to teach him? (What 21yo can’t benefit from impartial help outside of mom and dad who are themselves grasping at straws and trying to find their feet?) Who’s going to help us help him to navigate this path we have all been dumped on unceremoniously at this critical time? Autism does not just affect the one person having it, it affects the family as well…in numerous ways. We have 4 other children and are surrounded by family dynamics.

    Just when I see we and our son needs help (and a job!) the most at this critical juncture…there is precious little to be had, because there apparently are no adults with Autism.

    I’m really not a jaded person, but I sure *am* a frustrated one where this topic is concerned.

    • I understand your frustration all too well Pamela. You’ll feel it again the first time he gets a full-time job. If you want advice, keep reading. If you don’t, just know you’re not alone at all and he is so lucky to have such a supporting, understanding mom.

      I would advise your son to take baby steps: Take one class at the local community college. A local community college will allow him to live at home so he won’t have the stress of sharing a dorm or having to have a roommate (I cannot even imagine. It makes my skin crawl thinking about sharing my space). Have him take the rest of his classes online. He may need to start part-time. One class online and one at school.

      I would try to make his on-campus class the class he enjoys most – computers. Hopefully the excitement he feels about the class will make it less intimidating and because it is a specialized class and not a gen ed class, he may meet other computer geeks too. 🙂

      He can advance to going to classes on campus as he is comfortable. 🙂 By doing this, you will help him to keep pursuing his education and you’ll be supporting him. 🙂 Email anytime: pensiveaspie@gmail.com

      • I appreciate the input. We’ve had a bit of disagreement over how many classes he should take this fall at the community college. I home schooled him for 13 years and am voting for just a couple to prevent his being overwhelmed. He has been taking some courses online through “Coursera” to keep his head in the game, so to speak so far as programming goes. Splitting his classes between online and physical school is a good thought. He did have room mates for about a week at school, but his very black and white perceptions were of no help and he then had his own room. Of course, a huge impediment is the combination of Aspergers and dysgraphia. He’s had accommodations for the dysgraphia, but any form of writing is difficult for him, however, all education seems to rest upon writing quite heavily. I think it’s good for it to…except when you have a person who is totally capable otherwise but struggles seriously there. Classes themselves weren’t his problem, it was the lack of executive function needed to do the work OUTside of class coupled with anxiety. And that’s one of the problems… Asperger’s does affect people in various ways so great flexibility is really needed, yet education tends towards rigidity.

      • I hope you will keep me updated on his progress. I love hearing what “works” so I can share it with the next person. One of the things I have noticed about Asperger’s is the huge imbalance we have. Intellectually speaking, many aspies are years ahead of their peers. Emotionally speaking (what some would call maturity), those same aspies are often years behind their peers. This can be the reason why independent living is harder for the college aged aspie. Although they are ready intellectually for college, emotionally, they may still be too young to leave the nest. They’ll get there. Let me know how it works out for him. 🙂 I think splitting classes and only taking one class on campus would allow him to keep moving forward without being too overwhelmed. I strong suggest making his on-campus class the one that is most interesting to him. (Computers). You want that classroom experience to be a positive one so he can feel good about college. If he can type better than he can write, can he bring a laptop? Also – most college professors ENCOURAGE recording the class. Community college professors are more inclined to assist a student with their needs. You may want to talk to his professor in advance and ask the professor how he thinks he can help your son succeed in his class.

    • Pamela –
      My nine year old son is an Aspie and also has dysgrahia. His school provided an OT (FINALLY) last year, but we couldn’t see any progress. This summer we finally asked our doctor to refer him to the OT in town. He dx’d him with dysgraphia, and is seeing him once a week now. IDK about your insurance, but ours had a one time fee of $160, and then he gets 30 visits. It was obvious to the OT that our son is much better on the computer than handwriting. SO we are working with that and trying to get him an iPad for school next year (through special ed). An OT might be something for you to look into, especially since your son is excellent at computer programming. Our Aspie daughter had a different fine motor skill issue, and she was able to get an accommodation at college to never have to take handwritten notes – always able to use her laptop. And the same accommodation for tests, essays, etc.
      Also – our little town has a community college. Is there one close by to you where your son could live at home and go to classes? This might be a good way to transition and get used to being among new people. We live in Kansas, so when my daughter took classes there during high school it was a good way for her to meet people from all over (ours has a big soccer program, so they get kids from as far away as Australia), but still feel safe.
      I know how you feel. We truly felt that way about my daughter at several points! Some of her success we think just came with age, but also some came with me being a very pushy parent. I just refused to let schools off the hook because I KNEW she could be successful if she just could get some help.

    • Pamela why don’t you help your son enroll in a distance class for computing – I did my Masters and PhD with minimal contact with oncampus anything. I have been teaching in schools for years and now teach at uni – your son would benefit from a mentor on the spectrum too.
      kind regards Emma

  17. Occupational therapy as a resource would be helpful to look into. OT’s provide intervention/treatment services for adults with autism. The services are covered by most insurance companies and they specialize in community integration, social skills development, job skills training and life skills. Jennifer Weisz, OTD, OTR/L

  18. Reblogged this on Life as a Single Mom and commented:
    As a mother of an autistic daughter, I worry about when she won’t have the assistance she will need when she becomes of age. I can see that my worrying isn’t all for not, after reading what this blogger has gone through in her search for assistance as an adult with autism.

  19. My daughter is 9 and has autism, too. We live in Arkansas. The majority of services provided for children are state-funded, even if it’s through a waiver program, which usually comes ultimately from federal funding sources. The majority of the types of services we are used to looking at DO phase out at transition age BECAUSE there is a federal/state program called Vocational Rehabilitation (VR) under the Federal Dept of Education, or in AR as AR Dept of Rehabilitation Services (ARS). Most agencies for children fall under DHS (at least in AR).
    VR helps transition age and adult clients look for the best placement of work, helps to train/educate/prepare those clients for work and provides supportive services and follow-up to those clients, including housing, medication, and job placement services. I once thought there was no program out there for adults, but I currently work for ARS. There are options out there, but they are not as obvious because companies are not making money on them, which is why the government steps in. Most services for children have someone making money. In AR your top contenders are FirstStep, Ascent, Friendship Community Care – even if it’s titled as a non-profit does not mean there is no money coming in- look at Susan G. Komen for the Cure.
    If you can share with me the state/county in which you live, I can help put you in touch with a VR counselor to discuss the future plans for your child/teen. There are services specifically for transition age, too, and a new, exciting grant program called the PROMISE grant in which AR was one of few state to be awarded. There were other states, too, but in AR it’s a BIG DEAL!
    Things are looking better for our growing children than they ever have before, and as a person working in the field I can tell you this — the people that work in this field CARE. They are not doing it for the money, because the money is terrible. They love the clients, the opportunity to succeed for those clients and to make a difference in lives every day. Vocational Rehabilitation is not your average government agency.

  20. You’re right. There are very few services. That’s why, as the mom to Ann Aspie, I left my cush job, went back to school, and opened Evolibri seven years ago. We serve teens and adults, providing tailored services to help folks on the Spectrum succeed. Now we just need to expand!!

    • That is awesome! Your daughter is blessed to have you. I am seeing more and more of this! Autistics and their families are stepping forward to fill the need that no one else is filling. I only wish you weren’t so far from Florida! I will take any advice you have to offer. ❤ Thank you for reading my blog!

  21. I read your post and realized you’re absolutely right. While I don’t have autism or know anyone with it, I have done Google searches for it because I was curious. More often than not, I always see resources for children, and I found that odd, because I know there are adults with autism. Your post made me really think deeper about the subject of treatment of autistic adults. Also, I’m curious, when did you suspect you had autism? I always hear and read about testing and diagnosing children, but I rarely see anything that deals with testing and diagnosing adults. How did you suspect you had autism? What are warning signs?

    • I had all the signs of Asperger’s when I was younger – sensitivities to food, textures, and noises, lack of eye contact, poor socializing skills. The differences became more and more obvious as I grew. I didn’t acquire the social skills other girls did. I never could quite fit in. I was highly intelligent, but always on the outside of the social circles. Because I was smart and had no behavioral issues, everyone looked the other way. No one pays attention to the child who behaves.

      It almost sounds cheesy to say it, but.. if you are familiar with the Star Trek character Spock, then you will have some insight as to how my mind works. Very black and white. Very logic based. There are lots of great websites on the signs of Asperger’s. For a long time they thought it did not affect women because women are very good at faking behaviors to “pass” for normal.

      I discovered I had Asperger’s last year. I was 39. I had spent my entire life pretending to be someone I was not when I was in public. It is exhausting. The older I get, the less energy I have to “fake it” so I fit in. I reached a breaking point because of an issue with my employer. A friend suggested Asperger’s. I googled it and realized that it was like looking in a mirror. I wanted more info. I wanted to know what to do with it. Like you, I searched the internet in vain. As I mentioned, I did finally find a counselor who helped me, but I had to pay out of pocket.

      Thank you for taking the time to read this even though you are not personally affected by Autism. We need more wonderful people like you in this world. ❤

  22. I’m 46, diagnosed myself at about 41 after reading about autistm on a Doctor Who message board, and then researching it online and through borrowed library books. I agree strongly with much of what you said. In my little area which is maybe 50 square miles, the older you get the less there is out there. I have seen programs to help teens transition to college, for college students to get help while in college or get jobs after college. I have seen some programs that may help college graduates with housing. I’ve seen some social events available up to age 23 or 25. I’ve seen some research surveys available up til age 30. After that… I’m lucky that at least I have a support group for the over 25s that has a range of ages, but it only meets once a month.

    I understand the need to socialize better, to overcome sensory issues, but at 46 I’m too damned tired of trying to understand others, trying to be more normal to fit in. I don’t know that I can do it anymore. Don’t get me wrong, I can pretend for a little while, but I know better than to do Customer Service, Receptionist and other similar jobs. Not a good fit and why set myself up for failure.

    I’m currently unemployed after 13 years at the same company and I believe it was because we just didn’t understand each other and they preferred to get rid of me rather than take the time to really help, instead of the superficial.

    I currently live with my mom though I lived in dorms during 5 years of college (BA in English, the best time of my life), and I lived in my own apartments without roommates (except for a dog) for about 10 years, up until 2011.

    I have an idea by now of how to get by more or less, how to cope, because I didn’t want to stand out and get negative attention but getting by is short term term and it’s just not good enough. I don’t have the same drive/energy and patience that I did. Even the cheetah the fastest land animal can only go all out for a brief time. I feel like I’ve been going all out most of my life. I’m also really tired of trying so hard all the time (thought I’m sure others don’t think I’m trying hard enough). I feel like I’m walking a tightrope all the time trying to juggle multiple items.

    So… I’m not really sure where to go from here. I used to be positive and optimistic, but I can’t manage that anymore either. Now, I just try taking one day at a time and dealing with just getting done whatever needs done eventually.

    • I can definitely relate to your story. I was 40 last year when I realized I had Asperger’s and began looking for a counselor. You are so very right. There is nothing for us (as far as services go- at least in my area there isn’t).

      I find that most of the Aspies I talk to have a similar train of thought: the older we get, the less we care about fitting in. It takes an enormous amount of energy from us to socialize and I find I have less and less of that energy as I get older. The truth is that I am not sure if I have less energy to socialize or if I have just become more confident in who I am. Maybe both. Hmm… I will add that thought to my ‘future blogs’ file to think about.

      Also, discovering I had Asperger’s made everything make SENSE. For the first time, I realized that I wasn’t alone. Others had the same thought processes I had. It also allowed me to realize that I wasn’t a failure. I thought I had always just failed at being like everyone else. No matter how hard I tried, I was always like an imitation of others. When I was younger I continuously pushed myself to try harder. I read books on behavior. I watched and made notes. I did everything I could to observe the way people interacted so I could learn to do it. No matter how much I read, people always knew I was ‘different’ and most people equate ‘different’ to ‘less than’. I can’t count the number of times I have been made to feel ‘less than’ because I don’t behave like my peers. (And their behavior is so illogical to me. They are so loud. Loud, shrill laughter. Laughing when things really aren’t funny. The constant trading of compliments. And what is with the trend of adding GIRL to the end of every sentence. You know what I mean, GIRL? Ugh.) People always tried to tell me that those were just the behaviors that others use to connect. Nonstop talking. Constant chatter. You want to know my theory? I think non-Autistics suffer from Sedatephobia. They are AFRAID of Silence. 🙂 Aspies embrace it and non-Autistics do everything in their power to avoid it.

      I can’t tell you where to go from here, but I can tell you that you need support. I have found my greatest support through facebook. Some people aren’t completely comfortable ‘coming out’ about their Asperger’s on their personal facebook, so they create a second facebook to connect to other people with Asperger’s. Mine is: https://www.facebook.com/pensiveaspie I have this PensiveAspie facebook so I can connect with people I have met through my blog 🙂 I use my real fb for my family that is scattered all over the US. I posted Autism related things on both, but I feel like I can post more Autism related things on my Pensive fb. I don’t want to bombard my family with daily posts. They know I advocate for Asperger’s and Autism 🙂

      You don’t have to befriend me on facebook, but I do suggest you search Aspergers or Autism and find some groups that you can relate to. They are an amazing place of support. It’s nice to know that when you’re having a really bad, no good, perfectly awful, totally rotten day that someone else out there gets it. ❤

  23. I am a 31 year old undiagnosed Aspie and I can’t even afford to get the diagnosis. I am too impaired to work, and without a diagnosis I can’t even try to get on disability. It totally sucks. I am married to a man who is also an Aspie, he got a diagnosis as a teenager. We live on his SSI.

  24. I’m 50. My son is 23. ALthough I can get treatment for the PTSD with which I also suffer, I can get NO psychological support for the undiagnosed Asperger’s from which I realized that I ALSO suffer after my son was diagnosed at 14. My son was granted disability at 16, renewed at 18. Mine took over 5 years to get, and I lost EVERYTHING while I fought for it. My home, all of my belongings. Even custody of my son, once I was homeless. And I suffer from both physical AND “mental” disabilities.

    The best psychiatrist I ever saw sees no value in even being assessed to properly diagnose the High Fucnction Autism from which I so evidently suffer.

    Thanks for this blog. At least my son & I aren’t alone.

  25. I gave up on getting any kind of help 4 therapists, and 5 years ago. One wanted to drug me into a stupor with Depakote, one wanted to shove me into a group DBT thing no matter how loudly I objected, and the other two… One called me a liar, and the other told me that since I wasn’t male, and was over the age of 12, There was NO way I was autistic.
    I’m mostly functional. I have a job, and a mortgage, and pets, and a son who’s actually survived to adulthood, But I’ve also failed at two marriages, had to deal with coming out (that’s a whole other huge can of worms) and am basically a hermit when I’m not at work, or helping my mother with things (She’s most likely on the spectrum too, as was my father)
    I get told I can’t possibly be autistic, because I’m so outgoing.. But I can’t get people to understand that I learned that from Robin Williams.. if you act first, and boldly.. it puts people on the defensive, keeping me in control..
    I found Wrongplanet.net or com.. I can’t remember, but even there, they really don’t have much for a 45 year old fat woman who is unable to tell if a person is kidding by looking at their face.
    Thank you for showing me I’m not alone. I’m very lucky though.. my son is about as NT as you can possibly be, and bless his heart, he translates humans for me when I need him to.

  26. My son is 9 if we go by functioning labels (which I hate, but work well in shorthand) he is a level 3, severe like I said I hate them because that doesn’t show you what he is capable of. We pulled him out of public school because he needed to be in both gifted AND special ed and his school was failing him- his teachers were great, but overworked. His main teacher had 28 students and because he wasn’t having violent behaviors he was ignored. She was much more of a triage nurse than a teacher because she had to be. He is entering 4th grade now, he only can learn for a few minutes at a time- but he reads at a 12th grade level. My husband stays at home to teach him and our other kids, but I worry about him as an adult. He is brilliant, I know he is going to accomplish so much if he has the right support. He is going to need an employer who understands his frequent breaks will only aid his bursts of intense creativity and genius. He will need a college that understands he can learn a 3 hour lecture in 40 minutes but he has got to be able to stim that whole time. The more you guys raise the alert now of the support adults need, the more walls you knock down is one less he will have to. Thank you so much for that!

  27. Beautiful post and it NEEDS to be addressed. I know even at 10 years old when we got the Autism Spectrum diagnosis for my son, there was VERY little help for him outside of your basic therapy. All the programs and classes and support in school was for little kids, ages 5 and under. And the school? Oh man, what a joke. No help or support, no special learning system, no understanding his needs and triggers. They just wanted to “correct” his autistic behavior, “teach” him to be normal like the rest of the kids, and eventually churn him back into mainstream. NO. If an older child isn’t getting the support needed, I know there’s even less in his future as an adult.

    Keep making noise …. I will too! There is a whole lot of individual support systems out there, even if the rest of the world ignores it.

  28. Definitely agree! I felt the same when I looked around my area. I thought:”great so many resources!” but they all seem child focused. Its also difficult too since aspergers presents so much differently than classic autism so thats another hurdle. Somebody who can look through those quirks and coping mechanisms as well. The other struggle I felt was trying to find someone who worked with adult females with aspergers. That seems almost impossible. So being a self diagnosed female Aspie seems about the only route I can choose for now.

    • I fully get your challenges both personally and professionally. This is what motivated me to specialize with adults with Asperger’s Syndrome or as the DSM 5 calls it – Social Pragmatic Disorder.

      Anyone in the Orange County, CA area needing support please don’t hesitate to give me a call. I would love to help with all our family has learned through the process.

      Laura Pratto, M.A.
      Marriage and Family Therapist
      Registered Intern # 69133
      Supervised by Dr. Burt Winer
      Institute of Advanced Studies
      323.314.1715
      therapywithlaurapratto@gmail.com

  29. Pingback: Autistic Representation and Real-Life Consequences: An In-Depth Look

  30. I just discovered your blog, and it was something of an eye opener.
    Ironically, I am from NE Florida (grew up in Jacksonville). When I was eleven years old, after receiving medical tests for a number of health problems, my mother was told by my neurologist that I had a very interesting way of learning, that I had “tunneled” interests, and that in all likelihood I would never quite fit in. But that was in 1974, when the Aspergers diagnosis didn’t exist.
    I began suspecting, as an adult, that I had some sort of autism related disorder in the early 1990’s. In 2002, I met a man who was almost my age who had been diagnosed, and saw many similarities. But trying to obtain a diagnosis in my hometown was impossible (though, in 2002, I was in south Florida and hadn’t made up my mind to pursue the diagnosis). In fact, it was only after I hit the wall in 2012 that I began to press for a diagnosis. I received on, finally, in 2014, but in Connecticut.
    Autism Spectrum Disorder, with executive dysfunction, severe depression, anxiety, and agoraphobia.
    It frustrates me the severe lack of resources for people like us here in a state of almost 20 million people, yet in Connecticut, a far smaller state, there are plenty. It puzzles me, it angers me.
    Right now, I am pretty much a mess. I am muddling through.
    Again, glad I found this blog. Thanks for sharing.
    – Robert

  31. Pingback: What’s So Hard About Being An Adult With Autism?

  32. Hello! I was fortunate to have recently attended a workshop with Dr. Linda Hecker from Landmark College in Vermont. This college’s student community is entirely made up of neurodiverse adult students, many of whom are diagnosed with ASD. Although Landmark is a two year college, they also offer graduate certificates (in conjunction with another university) in teaching adult neurodiverse students. A colleague of mine attended this program and shared the information with the rest of my department of developmental English instructors. After meeting Dr. Hecker and learning more about effective instructional strategies, I would highly recommend researching the college and graduate program to anyone interested in learning more about improving executive function, living with (or working with those with) any combination of affective/non-cognitive and/or cognitive diagnoses classified as neurodiverse.
    My best,
    Amy

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