Do you think about what things will be like when your ASD child is 18, 25 and 40?

coffee bean · February 2014

I don't know many adults with autism. My husband's cousin is in his mid-20's, has asperger's and lives with his parents, while maintaining a very good federal gov job (he designs and analyzes geospatial maps of terrorist zones - talk about finding his niche to excel!). My co-worker has a daughter who is 19 with high functioning ASD. She goes to a special college, rides the bus downtown to get there and is rather independent, but has very few friends (doesn't seem to want them).

Do you sit and wonder what it will be like when your child is an adult? Do you assume they will live with you forever? At this point, I just can't imagine sending my daughter who is HFA out to go to a job, pay bills, etc. I really hope she is able to do that one day. I also really hope a similar amount of energy and funding that goes into early detection and therapy for ASD goes into life readiness skills and therapies when the 1 in 50 to 80 kids with autism become adults. I don't know much about these programs yet (my daughter is in kindergarten). Does anyone on the board, out of curiosity?

kcisthebombdotcom · February 2014

I tell dh often i want to fast forward 20 years to see how everything plays out and then come back to present time. right now things are pretty easy. dd has delayed language and social skills but it would be hard to find someone who realized her differences outside of thinking her sentence structure kind of stunk for three and she was shy. i know with time her differences will become more apparent and that is scary for me.

coffee bean · February 2014

KC_13 said:

I tell dh often i want to fast forward 20 years to see how everything plays out and then come back to present time. right now things are pretty easy. dd has delayed language and social skills but it would be hard to find someone who realized her differences outside of thinking her sentence structure kind of stunk for three and she was shy. i know with time her differences will become more apparent and that is scary for me.

I hear you. My girls are ID twins - one has ASD and ADHD, the other doesn't. Their differences are really starting to come out now in kindergarten. My typical DD helps her sister with lots of tasks and activities, has friends, shows responsibility and independence, and talkstalkstalks, etc. We'll see how things play out.

MirandaHobbes · February 2014

Even though I hate to do it, I am always compulsively googling college programs for kids with ASD. And to @auntie point, the few that exist seem to be outrageously expensive without a lot of bang for your buck. But I'm sure there are parents out there who would pay any amount for their kid to graduate from any college. I have a coworker who wants to send her ADD kid to Landmark in Vermont. She wants to throw down $120K for a 2-year degree. I'm trying not to judge, I mean, I can see myself feeling the same way, but there has to be some sort of prospects after graduation.

lite-bright · February 2014

No. I don't. We continue to save for her education, because that money will be used one way or another. I could totally see her doing some time at community college before jumping into a regular university. We still expect education of some kind to be in her future even if we don't know what it will look like.

I don't expect there to be tons of programs, honestly. Or they will be too expensive to be in reach for us. I expect that the bulk of support for her education will continue to be on us, even more than in the grade-school years. I am optimistic that she will be independent, but we will get a better idea of that as time goes on. I recognize that there is a worst-case scenario of her living with us indefinitely and/or being on disability, but I don't see the point in dwelling on it. We'll save as much as we can and the picture of what we're dealing with will make itself clear with time.

I can't imagine sending my NT kid off to work or to pay bills at this age, either, though. :P I have no idea what she'll want to do or if she'll be able to support herself, what her talents and personality will enable her to do, etc. We will deal with those things for both of them as they grow. For now we'll work on small things like letting DD1 pay for her own purchase at the book store and helping me cook.

I strongly suspect my younger brother is on the spectrum. He is 32, works for the family business after flunking out of college, bought his own townhouse within a few blocks of my parents, and hasn't had a romantic relationship (that I know of) since high school (when he dated a girl he carpooled with). He has a small but strong group of friends and seems happy with his life.

I have to admit I want more for my kids than that (for one, a background/training/something that will allow them to work for someone other than family), but I also recognize that is probably a bit snobby of me, and I wouldn't be particularly thrilled if one of my kids wanted to go be a starving actor working restaurant and retail jobs, either. But you don't always get what you want, right? :P

coffee bean · February 2014

-auntie- said:

This is a link to CLE--

https://experiencecle.com/

Students who do CLE live in a CLE dorm with supervision and attend different colleges in the community.

Another option is Beacon in Leesburg, FL. Beacon is sort of different. My parents live near the campus and wondered what was up with all the quirky nerdy young people roaming the town- they didn't know they lived near the ADHD/Asperger College.

https://www.beaconcollege.edu/

CLE is where my co-worker's daughter goes...

coffee bean · February 2014

Her daughter is not ADHD - she is autistic. I haven't spoken to her lately about her experience. It was positive when she just began, I'll have to check in with her.

typeset · February 2014

-auntie- said:

Did anyone catch Big Bang Theory Thursday night? There was a classic Train Boy in the episode. He was played for laughs, which kind of sucks, but he was pretty stop on. DS watched it with us, and gave the writers a big thumbs up for accuracy on the train details but didn't especially like how over the top the character was but freely admits he has met such individuals and works hard to not behave that way publicly. He made the point that a person using a wheelchair wouldn't be used as a humorous plot device which is a fair point.

https://www.cbs.com/shows/big_bang_theory/episodes/212864

I had both of our boys in mind watching that. I spent much of the episode cringing in horror, at the fact that this is enough of a thing to be a THING and at the NT reaction to it.

MirandaHobbes · February 2014

I just eat these stories up (c&p'd from the Boston Globe)

Applying to college, student with autism changes perceptions one song at a time

By Gianna Hitsos

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credit

Gianna Hitsos has auditioned for several college music programs and is close to making a decision on where she wants to attend this fall.

It has been over a year since I started my college search. I still have months to go before I begin my college life, but I wanted to take a look back on my new, exciting, and very frightening journey.

I am an 18-year-old senior in high school with high-functioning autism. I decided to apply to college as a music major.

For the past five years, I have taken voice lessons at the Boston Conservatory Program for Students on the Autism Spectrum, a unique program that trains musically talented autistic students. Music has always helped me process things better, but it has turned into so much more. I found a talent and passion for singing I never knew I had, and music became a path to inclusion for me. I was determined to study music at college!

With all of the challenges that go with having autism, my parents and I realized that for me to be successful we had to find colleges that were fairly close to home, since I would have to live on campus.

While other kids looked at sports, Greek life, internships, and how to get as far away from home as possible, I looked at my major, how the buildings were organized on campus, and most importantly, whether these schools were inclusive of autistic people. Feeling included somewhere was as important as academics.

The other factor was the challenge of having a roommate. Since I “stem” by rocking back and forth, pacing, and talking to myself, I would need a single room to succeed.

After a lot of research (Thanks, Mom!), we narrowed it down to 10 colleges, and last fall we started our visits to them. What an eye opener that was! Some were beautiful and had great music programs, some did not give me a feeling of inclusion, and some looked downright dangerous.

When we narrowed it down, my mom and I scheduled tours and made appointments with the disability services departments. We asked what accommodations they could provide me and if they are experienced with students on the spectrum at their college.

The next part was really important. I went to visit colleges two, three, even four times. It made all the difference because when I went back, I sometimes liked the college more, and it went up in the ranking, and sometimes I got a different vibe or learned a little more about the students and the rank dropped.

Some colleges require SAT or ACT scores. I truly believe standardized tests do not reflect my ability to learn and be successful in school. Despite my autism, I have been able to maintain an A average and I’m a member of the National Honor Society. But when it comes to test-taking I need accommodations like a separate room and frequent breaks. Even still, taking the ACT was hard.

Another part of the application was the required essay. This part was easy because I love to write, and I was asked to tell my personal story. My journey as a person with autism is quite a unique story. My only complaint here was that there a word limit and I had so much to tell them!

Most all of the colleges “strongly” suggest that you interview with the admissions department as part of your application. When I heard of this requirement, I panicked. I couldn’t imagine, with my autism, how I would be able to answer unanticipated questions and use enough pragmatic language to impress these people, let alone look them in the eye!

My parents, however, believed in me and knew that if we practiced, I could do it. So, my mom looked up sample questions online and every night, whether I wanted to or not, we practiced the interview questions for an hour.

Believe it or not, when I got to the first interview, the person asked me the exact same questions we practiced!

The worst part of this adventure is the stress that I experienced along the way. The process of transitioning from high school to college is really difficult, especially as a student with autism. I didn’t want to talk about the process with my parents, even though I had a lot of worries on my mind. I have friends, but unfortunately none that I could talk to about my issues because their journey was different. I can only say to other parents, never stop reaching out to your kids, since my parents finally reached me and got me through it and I am so much calmer and happier now!

Two of the colleges offered an experience where you could stay overnight in the dorms with students and the next day you could see what a day in the life of a student at that college would be like by attending classes and events. This sounded like a really exciting thing to do, so I signed up.

The problem with this experience is that I had never spent a night away from home without my parents. Also, I am an only child, so I have never had to share things like bedrooms.

I decided that the best way to handle the autism issue was to bring it up right away. So, I explained to my hosts (and anybody else we were hanging out with) that if they saw or heard anything that I did or said that seemed different to them, it was because I had high-functioning autism.

Once I came out with it, the girls I stayed with said, “That’s cool.” What a relief! I had cleared the air, and I could be myself!

Every event I attended was so interesting and fun and the classes were so awesome that I really started to feel like college was the place for me.

Not all colleges require live auditions to become a music major. Some just ask you to send in your resume and a CD or DVD recording of you singing. However, three of the colleges required that you audition live, which was pretty nerve-racking the first time around.

The second audition went much, much better than the first one. I had a lot more time to warm up, and the staff was a lot friendlier. Right away, I performed my two songs, which I NAILED! I felt awesome!

Everything was complete and all I had to do was wait. And then . . .

Yep! My first college acceptance letter with a merit scholarship. Gianna 1, Autism 0!

Since then, I have been accepted at four colleges so far. Two of the colleges were the ones that asked for my ACT scores. Go figure! Even more exciting, remember that audition I nailed? I passed the audition and was accepted into their Music Department! I haven’t made my final decision, although I am leaning toward one, so this journey is not finished. But I’m so happy that all my hard work paid off. All I know is that I am on my way to fulfill my goals, and I will be changing perceptions of autism one song at a time.

Gianna Hitsos is a student at Groton-Dunstable Regional High School and an advocate for autism awareness. She has been writing a guest blog for Autism Speaks about her college application journey. This column was condensed from two of her articles.

malcivar · February 2014

A lot.

I have some experience as my twin is a special needs adult. She's emotionally disturbed though I think if she were to be diagnosed today she would totally be on the spectrum. In fact most people assume autism and not the other.

She went to a good school, graduated at 21 and her placement coordinator thought she could do more than a sheltered workshop, cleaning or food industry and put her in a program that trained for light office work. She has been working for the last 15 years at Mount Sinai hospital here in NYC. She works distributing mail and some filing. She's got a desk and everything. Her life is very lonely - no friends, no social life - her social skills make it very hard for her to have friends. When someone is nice, she goes super overboard and people get weirded out and run for the hills. She lives with my parents, both of whom are elderly so DH and I know that eventually she will be our responsibility. She can't live alone. She'd never make it.

So I look at my Chris and I am afraid. He's come a long way in the last 2 years but he still has very little of what I'd consider functional speech beyond asking for things he wants. He is a child unto himself, his social skills haven't improved much at all. He still basically ignores all other kids and can 't sit still. Whenever we've gone to visit him at school for a particular event, he doesn't participate. Instead it's his teacher or some poor assistant chasing him around the room as he's trying to climb the furniture. So I wonder at how much progress he'll make by the time he's 18.

The pre-school he's in now is run by an organization that has great programs for adults - assisted living houses and job training programs so we won't lose touch with them once he graduates. They seem to really take it one case at a time. www.heartshare.org in case anyone's interested.

Wow that was longer than I thought it would be but yeah, I think about it a lot.

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Do you think about what things will be like when your ASD child is 18, 25 and 40?

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Applying to college, student with autism changes perceptions one song at a time

By Gianna Hitsos

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