Saturday, September 7, 2013

Why Isn't Anyone Doing This?

As Jacob has now graduated from high school, he's planning for the next step in his life.  As much as he would like to find a job, have a girlfriend, and move out on his own, he has absolutely no idea on how to accomplish any of these goals.

So far, I've had to support him in everything that he's doing.  I've helped him apply for SSI which he is now receiving.  I helped him register to attend a local community college and make an appointment with the DSPS counsellor.  He didn't know what classes he wanted to take, so we reviewed the class description of every class that the school offers, and I mean every single one, until we found a few that he'd like to enroll.  I helped him find an internship at a local doggie daycare, and if he does a good job, the owner might consider hiring him for a permanent position.

So, Jacob is doing fairly well, but without my support, none of it would be happening.  While I'm happy to help, the entire experience shows me just how unprepared Jacob is to take control of his life.  I know he'll get there eventually, but it is requiring a lot of parental support.  I'm lucky that I've worked in the autism education field for a while, so I'm well-informed on what is and isn't available to Jacob. 


There are a lot of organizations starting to pop up that are filling in the gap to support adults with autism.  There are residential support programs.  There are professional job and life coaches that specialize in working adults with autism.  There are "day programs" where adults that go to practice life skills like shopping and taking public transportation.  It seems there are all sorts of programs out there, but none of them are what I want for Jacob.

What I would really like is a program that supports Jacob while he is still living at home.  I want a program that supports him in an internship so he can learn how to understand the expectations of his supervisor that would also help him make social connections to his co-workers.  I would like this program to support him in community-based activities centered on fitness and his special interests, then help him share these with his co-workers at his internship so he can learn how to build meaningful friendships.  I want this program to help him attend college and support him in taking classes so he can make social connections at school and get academic support for his school work.  I want this program to help him organize and personalize his room so he learns how to make his living environment calm and clean.  I also want him to learn how to entertain guests at home and learn how to organize small dinner parties or movie nights with his friends at our house.


But where does such a program exist?  I can't find a anything like it, not in Los Angeles or anywhere in Southern California.  There are residential programs that do some of this, but Jacob is not ready to move away from home, not just yet.  He needs to learn how to keep a job and make positive social connections at work and make lasting friendships as a foundational skill while he is still living at home.  Since he wants to go to college, he'll need help navigating the enrollment process, interacting with his counselor, and finding his way around the campus as well as make social connections with his classmates.  Once he's mastered all of this, I know he'll be ready to transition to his own apartment and keep a job so he'll have the income to support himself.  He still needs help with all of this, so I'm glad he's still at home so I can give him the support that I know he needs.


I think helping Jacob find an internship was a great first step.  The next thing is to get him doing some type of physical activity and find things that he'd like to do on a regular basis so he can share these with the co-workers at his internship so these work relationships can turn into true friendships.   Referrals are the primary way to find future work, so the more positive friendships he makes and the larger his social circle becomes, the more opportunities he'll have at being referred by a someone that knows and likes him for future employment.  A meaningful job with a decent living wage is what I wish for Jacob.  I'm sure he'll reach this goal with the right support.


I used to run a residential program that promoted itself as "a comprehensive post-secondary transition program for young adults with Autism Spectrum and Learning Differences that offered individualized academic, social, career, and life skills support".   I learned a lot from this experience, especially that doing everything at once for a young person that is moving away from home, sometimes for the first time in their young adult lives, can be extremely overwhelming and this approach isn't necessarily the best way to support that young adult.  I felt that the goal of the program that I was running was to help students experience success so they could feel good about themselves and they would be motivated to take on more and more responsibility in being in charge of their lives.  All of these young people had challenges in making social connections,  managing their time and money and had little experience doing chores at home like doing laundry or going grocery shopping.  Imagine if you were a young person just like this, having to do all of these things for the first time while attending college and possibly having an internship, you were a bit immature and naive then add having to live with a roommate who was someone you didn't necessary like or have anything in common.  After about a year and a half of running the program, I learned that it was difficult fostering feelings of success and independence in the young adults that were enrolled in my program in the way that this company structured their services.   I also felt that I was letting down the parents of these young people as they were putting their trust in me to deliver on the assurances that the company was making but were next to impossible for me to keep.  Just like several of my students, I crashed and burned and left the company just short of my two year anniversary.

For parents that are in the same situation as I am, thoroughly investigate and ask a lot of questions of the executive directors and senior managers of any program that you are planning to entrust your child.  It's especially important that their alumni's have a solid track record of employment after leaving the program because without this, your child will not only not have the means to support themselves, but also will lack in a social network that will help them find future employment or get promoted to better employment opportunities.  I don't know any programs that offer internship placement with social mentoring in community based activities that bridge these experiences to connections with co-workers, so ask the director of any program you are considering how they do this and get solid examples of when it was successfully implemented.  Ask to speak to parents that have students in the program and also to parents whose children have left that program and are currently employed in a full-time job where they are happy and making social connections. 


Since I can't find a program like the one I'm describing, I'm working making one happen for Jacob, then I'll make it available to other parents so they can access it for adult child.


More about this to come in a future post as it develops.


4 comments:

  1. So glad you are taking on social mentoring at the community college level. Are you thinking about setting up something independently and/or working with the existing community-college counseling services? Love to hear more. I understand this project is still incubating. But if you have any more thoughts to share at this time, I'd love to hear them. My son with ASD is now concurrently enrolled in homeschool and SMC. He's already using some of the SMC existing disability services with mixed results.

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  2. Hi: I haven't spoken to any of the college counseling services, but I am available to consult. I found there is very limited support from the college DSS department pretty much limited to extended test times and note takers, and the note taker was to a volunteer from someone in the class; no one did, so Jacob never got this service. I was able to get approval from DSS department to allow a mentor/companion to accompany Jacob in the class. The companion helps Jacob feel more comfortable and he also fills me in on what's going on so I can follow up at home. It's still been a bit of a struggle but it's working. I'm available for consultations and you can contact me at susano.coach@gmail.com for more info. Good luck to you and your son.

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  3. In the LA area, there is actually one option. I know USC's OT Faculty Practice actually has a program for autistic young adults. They also can do telehealth sessions if needed be. So, they do quite awesome work. However, one hour per week sometimes is not enough.

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  4. Bill, one hour is not enough. Supports need to be available as needed to give the individual confidence to try new things and take control of their lives. I am helping to establish a non-profit that will do residential, community integration, and vocational support by stressing the importance of quality connections.

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