Self-Advocacy

It’s commonly agreed that the ability to advocate for oneself is important for young adults with Asperger’s/mild autism, not only in school and the workplace, but in many areas of their lives.  Parents and educators of teenagers discuss the need for it at great length, and you see the term crop up in message boards across the country.  Everyone agrees on the need for our kids to learn self-advocacy, but unfortunately, few people talk about what successful self-advocacy actually looks like.

The website Wright’s Law has a great definition of self-advocacy: “Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.” In essence, self-advocacy is the ability to run your own life.

What I particularly like about this definition of self-advocacy is that it provides a nice list of skills our young adults will need to learn.  I’m not saying it will be easy for us to teach them these skills or that this list is complete – it’s not.  But it gives us a good starting point.

I also like that it’s a little more detailed than the definition I typically hear when chatting with other parents, which generally runs along the lines of “Self-advocacy is knowing your rights and how to get them enforced.”  The problem with that definition is that it’s incredibly non-useful in the long run.  While people with disabilities absolutely do need to know their rights and how to access them, knowing your rights is not enough to get you through life.

For instance, let’s say you knew you had to get a job so you could pay your rent.  You decide what type of job you’d like to get and learn that it will be easier for you to get that job if you have the appropriate college degree.  So you head off to college, sign up and start taking classes.  So far so good.

Then your autism starts to trip you up.  Because of your auditory processing difficulties, your writing difficulties, your shaky understanding of social behavior, and your poor organizational skills, you’re having trouble taking notes, you’re not getting your assignments turned in and you have a hard time figuring out what the instructor is asking for on tests.  And since your self-awareness is low, you don’t know what your difficulties are and how they’re affecting your grade.  You are sinking fast and don’t know why.  Unfortunately, the problems you have in recognizing that you need help and asking for it, mean that you don’t schedule an appointment with your instructor to figure out why you’re flunking the class.  The term ends and you wind up with a big fat “F” on your records.

If you’re like many students with Asperger’s, you end up doing this again for a few more terms, then you flunk out of college.  You decide that you’re incapable of getting a college degree and leave school forever.  (It’s extremely common for people with mild autism to fail in college the first time they attempt going.  Some of them are able to go back and get a degree later in life when they’ve learned a few more life skills, but many never try again.  In some of my upcoming posts, I’ll address what we know about helping people with Asperger’s succeed in college.)

But let’s say that you’ve learned a little about self-advocacy.  You know your college has a program to help people with disabilities (the one at our local college is called DPS), and you know that you have rights.  (The Pacer Center website has a great discussion about the kinds of rights college students with disabilities have under ADA and the Rehabilitation Act.)  So you head off to the DPS in search of help.  Once there, you find out the following (paraphrased from Chaffey College DPS):

The student is responsible for providing current documentation of their disability to the college; planning his/her own education, identifying resources, and requesting reasonable accommodations; implementing their own academic plan and requesting services each time they are needed; meeting the unaltered fundamental college academic standards, standard course objectives, code of conduct, and program requirements; and providing their own personal services to assure their own independence and safety. The student is responsible to advocate for him/herself.

The DPS program can help you with things like on-campus transportation, physical access to classrooms, getting textbooks in an auditory format, taking tests in a quiet environment, tutoring, and education related counseling.  Your legal rights ensure that.  However, in order to access the help that your rights guarantee, you have to have enough self-awareness to know what help you need and you have to be able to ask for that help.  Your college professor is not going to track you down to make sure you understood today’s assignment.  He’s not going to ask if you have difficulties taking tests in noisy environments, or if you need written course notes.  As an adult student, it’s your responsibility to figure out what you need to pass his class.

Knowing your rights is an important part of self-advocacy, but it is in no way the only or most important skill our kids need to make it in the adult world.

So what do our kids need?  That’s what I’ve been asking myself and the other parents, educators, employers and agency workers I’ve been meeting with lately.  What do we teach our kids now so that when the time comes they can successfully transition into adult life?  So far, the answer is, we don’t really know.  For the most part, we’re still determining the best ways we can help our kids with Asperger’s grow into successful adults with Asperger’s.  But we have identified some of the difficulties our kids are facing, what’s causing them, and what skills our kids need to overcome them.  Here’s a list of some of the skills and characteristics young adults will need to develop in order to effectively self-advocate:

Characteristics/skills for successful self-advocacy: 

  • Self-awareness:  knowing their goals; what they like and don’t like; and their strengths and weaknesses compared to the typical population.
  • The ability to set goals, work toward them, and modify them as needed.
  • To know that they can learn how to do just about anything.
  • To know that life is a learning process.
  • Problem solving skills.
  • The ability to know when they need help, what kind of help they need, and how to get it.
  • A sense of self-responsibility – that their life is their responsibility, not anyone else’s.
  • Resiliency – how to survive life’s little (and not so little) set-backs.
  • Knowing what kinds of interpersonal relationships they’d like to have and how to build them.

This list is far from complete and it doesn’t go into detail.  My hope is that in the next couple of months I can dig a little deeper into the particular skills our kids need and talk about how we can teach them.  As I continue my research, I’ll post my findings here and update the list on my website.  I’d love to hear any suggestions and comments you have on the topic, because you (all of you) are the largest, most current source of information there is.  Your experiences are important, and I want to hear them.

Our children aren’t going to be children much longer.  As parents and educators our influence lessens over them a little bit more each day and so does our ability to direct their lives.  It’s the way life should be, and in the long run, it’s best for our kids.  That doesn’t mean it’s always an easy process or a short one.  But that’s okay.  Our children’s brains won’t solidify when they hit 18 years old, or 21, or 61.  They’ll still be learning and growing long after they leave childhood behind.  It may take them longer to learn the skills they need in adulthood than it takes neurotypical people, but that doesn’t mean they won’t get there.  And each little thing we teach them helps them get there faster.

– Cassie

PS. If you think this post might be helpful to someone else, pass it on.

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