More Helping, Less Arguing

To parents of kids with Asperger’s or autism:
We can’t in one breath tell the world how horrible our lives and our children’s lives are because they have autism, then in the next tell our children that they are wonderful and shouldn’t feel bad about having autism. They won’t believe us.

To people with Asperger’s or autism:
You can’t tell parents of children with autism that your lives are really hard, that no one understands or accepts you, and that NTs/allistics are mean to you, then tell parents they shouldn’t try to fix or cure their child. They don’t want their children to suffer what you tell them is a horrible life.

Debating whether people with autism should be cured and if so, who should make that decision, (people with autism or the parents of people with autism), is a wonderful pastime, but at this point purely academic. As of now, no cure exists. However, there are a lot of people who have autism now who could use help learning how to survive in a society that is not prepared to accommodate them. More helping and less arguing would be nice.

Demanding that society is nice to people with disabilities (or working toward that cause) is wonderful and blessings on those who do it. Every person they convince is one more person who will help make the lives of people with autism easier. But believing that all of society will change is ignoring human nature. Please don’t let your passion to change society take precedence over teaching children in your care who have autism how to become as independent, capable, safe, and happy as possible.

Each of us has a limited amount of time and energy we can spend on autism. Let’s put those resources where they will do the most good.

– Cassie
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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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Leaving The Nest

The thing is, our children are getting older.  Many of them are no longer kids.  They’re young adults, ready to step out into the world.  They may or may not be leaving home yet, but they’re definitely wandering farther afield.  They’re graduating high school; starting college; looking for work; or learning to drive, take the city bus or ride their bike wherever they feel like going.  Some of them are dating.  They’re asserting their independence and letting mom and dad know that they’re old enough to make more of their own decisions.  Our sweet little babies are gone and in their places are sweet men and women who are beginning to face the world of adulthood.

They may or may not be ready.  We, as parents, definitely aren’t ready.  But like it or not, here we go.

I’m bringing this up because over the last few months, I’ve been pretty busy.  Not blogging (sorry!), but I’ve been talking to parents, K-12 educators, college educators, job developers, employers, adults with autism, government program administrators, service providers and other people who are trying to figure out how to help young adults with mild autism/Asperger’s successfully make the transition to adulthood.  Meetings like the ones I’m attending are happening all over the country – small meetings between a handful of agencies, large ones that determine statewide programs, and huge gatherings that draw people from across the nation, all working toward figuring out what we can teach our kids now that will help them succeed as adults later.

Do we know the answers yet?  No.  In some cases, we’re still trying to figure out the right questions to ask.  But we’re making progress.  We’re figuring out the reasons why college students with Asperger’s are more likely than neurotypical kids to flunk out of college their first time around.  We’re finding the most common reasons it takes our kids longer to learn the work skills that will keep them employed.  We’re identifying the potholes and challenges our kids face, and the characteristics and skills our kids will need to overcome them.

I’ve been gathering information so that I can recommend what Open Doors Now (the non-profit I run) should do to help our local young adults succeed in college and the workplace.  I am also the mother of a 17 year old son who has mild autism, is 6’2”, is getting ready to graduate high school, and is currently ineligible to receive any sort of state assistance.  Is part of the reason I’m pursuing this topic because of a mild (okay – moderate) sense of panic?  That could be true.  But that’s okay.  If autism research is like a mill, slowly but continually producing more and more knowledge about how to help our kids, panicked parents are one of the biggest forces that power that mill.

My third goal (after helping my son and our local Aspie population) is to pass on what I’m learning to you – the parents, educators and Aspies themselves who are looking for solutions now to help yourself or people you care about.  My posts over the next few weeks will be concentrating on the issues of transitioning to life after high school, but they won’t just be written for teachers and parents of teens.  Educators and parents of younger children, this stuff is for you, too.  Many of the skills our kids need to learn to make it as adults are ones we need to be teaching from pre-school age through high school; at home, at school and in the community.  Many of the attitudes our kids will need to have are ones you need to be modeling now.  Adults on the spectrum (and parents of adults on the spectrum), you can benefit from this information as well.  It’s never too late for any of us to do a little self-improvement, and if our efforts make our lives a little easier in the process, all the better.

In addition to posting on my blog, I’ve started sharing helpful links to what other people are coming up with on my Facebook page, ODN’s Facebook page, and my Pinterest account (Autism & Education, and Autism — Adults.)  Feel free to check them out.

One of the best things I’ve learned in all these meetings I’ve been attending is that my family is not facing this alone.  Yours isn’t either.  There are a lot of people, all over the world, who are working to help our kids learn to lead successful adult lives.  Together we are going to come up with solutions.

– Cassie

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

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