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

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.

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.

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!

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

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.

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.

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.