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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Don’t Dose Your Kid With Bleach

I never thought I’d have to say this, but please, don’t put bleach inside your kid in any way shape or form.  Even if someone with credentials a mile long tells you it’s a good thing, don’t do it.  Don’t give it to him/her orally or in any other manner, including via their bottom.  Bleach does not cure autism.  It can, however, kill your child.

Every couple of months the autism message boards light up with a new cure or treatment.  In the last few years I’ve seen plenty – various diets, supplements, oxygen therapy, brain stimulation, bath additives, injections, vitamins, stem cell therapy, herbs, neurofeedback and more.  Some of them benefit our kids; some of them don’t.  Some of them hurt our kids and a few can kill them.  The problem for parents is figuring out which is which.

As a parent of a child with autism, I understand our need to do whatever possible to make our children’s lives easier.  If I could trade my arms and legs in exchange for my child to have the ability to live independently, safely and happily as an adult, I’d do it in a heartbeat.  There’s nothing I want more than for all my children to become fully functioning and to have great lives long after I’m gone.  My biggest fear is that I will die before they are able to care for themselves.  I desperately want a cure for the bad parts of autism.  Unfortunately, that makes me a sitting duck.

Any time, any place where people suffer, someone will be selling a way to make the suffering go away.  Sometimes the sellers are really trying to help people; sometimes they’re just trying to make a buck.  And sometimes they are intentionally triggering every emotional response they can from people so they can drain them of every possible dollar, with absolutely no regard for the effectiveness or safety of the product they’re selling.  They use every hard-sell technique they can think of, mining our dreams and fears to promote their bat-sweat-monkey-spit cure.  They paint a picture of our child, free from the negative aspects of autism: a loving, caring child, who has friends, good grades, is healthy and who loves us very much.  What parent wouldn’t want that?  They promise us that future, as long as we are smart enough to see that their treatment is the right choice, even if other “experts” denounce it; as long as we have faith; if we care enough about our child to do what it takes to make him well; and as long as we pay and keep paying.  They play our heartstrings to get to our pockets, and if our children suffer in the process, so be it.  As long as they are getting rich, they don’t care.

Yeah, there’s a special place in hell for people like that.

I am in no way saying that every treatment that parents talk about on the internet is snake oil and I’m not suggesting that any of our parents are intentionally disregarding our children’s safety.  There is a lot of helpful treatment advice we give each other.  Most of our doctors and other practitioners are honestly trying to help our kids.  But when we go looking for ways to help our children, we can’t forget that among the thousands and millions of people out there who wish nothing but the best for us, there are a few evil ones who are just looking to line their pockets.

When it comes to our children’s health, we have to be defensive.  If something about a product, therapy or treatment raises red flags in your mind, do some more investigation before deciding to use it on your child.  Your research may ultimately convince you to try the treatment, and that’s fine.  But take the time to check facts.  A really skilled salesperson can calm quite a few of our fears, but here are some situations that really ought to make us suspicious:

  • A treatment that looks fabulous but that few people know about.  If the treatment is so effective, why isn’t it more popular?
  • The treatment is only available as a limited time offer or from only one or two sources.
  • The treatment is really expensive and insurance has investigated it and won’t cover it.
  • The reason everyone doesn’t know about the treatment is because there’s a conspiracy.
  • The studies that prove the treatment’s effectiveness were done by people who will benefit if you buy the product.
  • Government agencies or medical associations have published reports that say the treatment is hazardous.
  • The seller is claiming the product will cure many unrelated conditions, (like cancer, autism, heart difficulties, migraines and autoimmune diseases.)  The body is very complex and few disorders have the same root cause.
  • The seller is pressuring you to buy their product.
  • If one of the main selling points is “it’s all natural.”  Opium, digitalis, strychnine, uranium and thousands of other substances are all natural but can still kill you.  Natural doesn’t equal safe. 
  • You can’t find any research (other than what the seller provides) that says the product is safe and effective.
  • Your pharmacist says it’s a bad idea or hasn’t heard of it.
  • The seller claims there are a lot of benefits to the product but no adverse side effects.  If something is potent enough a treatment to affect the body, it will almost always cause side effects.  They may not be harmful or serious, but they’ll exist.
  • The seller doesn’t provide a way to tell if the treatment isn’t working, for instance, “If you don’t see results in six weeks, stop treatment.”  No product or treatment is 100% effective for everyone using it.
  • If “the science hasn’t caught up with us yet.”  If science hasn’t proven the product is safe and effective, maybe you should wait until it does.  If the treatment is effective, it will still be effective in a few years when it’s proven.  Do you really want your child used as a guinea pig?
  • The seller claims that if you don’t see results from the treatment, you should increase the amount or frequency of it.
  • It is making your kid more sick.  Some effective treatments do have side effects but as a general rule, if your child is getting worse – stop using the treatment.  If you have to taper off, fine, but stop.

These are just a few situations that should make you concerned.  Again, they don’t necessarily mean the treatment is dangerous or ineffective, but they should make you evaluate it very carefully before you start using it on your child. 

Listen to your gut and do your research.  We are all human and we’re all fallible.  We will make mistakes and sadly, some of those mistakes will harm our children.  We have to carefully weigh the possible benefits and harm in every decision we make, and sometimes we’re going to blow it.  I hate that.  I really, really hate that.  The best we can do is to be as careful as we can when making those decisions, and when we do blow it, forgive ourselves and get back to focusing on helping our children. 

As for the bleach cure, it’s called “Miracle Mineral Solution” or “MMS” and when it’s used as directed it produces an industrial strength bleach inside the body.  The people selling it use dubious claims and twist science to make it seem like it cures all kinds of things, including autism.  The FDA has a different opinion:  FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS).  You can decide who you want to believe.  Choose carefully.

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Blinded by Science

A year or so ago I had the wonderful opportunity to have lunch with several people who are prominent in the field of autism.   It was great.  I found myself at a big table, tucked inbetween a famous author (who has autism and isn’t Temple Grandin) and a researcher from a big university who was conducting studies about teaching social skills to first graders.  I know, awesome, right?  It was.  I was having the time of my life, just sitting there eating my chicken sandwich and listening to everyone talk.  I mean, what was I going to add to the conversation?  Here were a bunch of people who each knew at least twenty times what I did about autism and have the credentials to prove it.  I felt like a junior high kid who accidently wandered onto a college campus and sat at the senior’s lunch table.  I was keeping quiet and trying not to sound like an idiot or dribble food down the front of my shirt.

Then I heard the researcher sitting next to me (I’ll call him Dr. X) talking to the young man to his left.  The young man had Asperger’s and had said he was interested in finding a romantic relationship.  “Hmm,” said Dr. X, “that’s highly unlikely.  After all, the amount of adaptation you and your partner would each need to make in order to sustain a relationship is quite large.”  Or, to translate his academic lingo into the kind of words you and I use, “Sorry dude, but you’re too weird for any girl to like you and even if she did, it would never work.”     

Now, I know Dr. X hadn’t meant to be cruel.  He was looking at the young man as a statistic, as a subject in one of his studies, as a member of a population he was studying under a microscope.  He didn’t see the kid as a lonely, young man who wanted a girlfriend to snuggle; he saw him as ‘subject, 22 years of age, Asperger’s/mild autism, status: seeking relationship’.  He looked at him through the lens of what he knew about autism, and it never occurred to him that he didn’t know a tinker’s darn about people with autism.

Now, I’m not saying Dr. X is dumb – far from it.  Nor am I saying that the studies he’s conducting aren’t shedding valuable light on our methods of teaching first grader’s not to spit on each other, which as the mother of an ex-first grader I consider extremely important.  I’m sure Dr. X is doing a bang-up job and that our autistic kids will be better for his efforts.  What I am saying is that if you think folks with Asperger’s/autism rarely get married, you ought to climb out of your ivory tower and go for a walk-about.  Go find some real adult Aspies and have a look-see.  Before you start making statements (especially to impressionable young men) about the ability for ASRD folks to have a relationship, go study some of the hundreds of thousands of married Aspies out there.   

It’s not like adult Aspies are hard to find.  Just go to any science fiction/fantasy/historical convention in the world, throw a rock into the crowd, then go talk to whomever yelps.  Or go chat with the folks at your nearest engineering firm, science lab or college gaming club.  (Or check universities where they have researchers who don’t have the social skills to know you don’t tell young adults that they’re too weird to get a date.)  In a time when Comic-Con makes the front page of CNN’s website every year, Aspie’s are pretty mainstream and very visible.  While by no means is every engineer, scientist, gamer or convention attendee on the Autism spectrum, Aspies show up in those areas in higher numbers than in areas like telemarketing, cheerleading, middle management and sales.  My point is, it doesn’t take a whole lot of effort to find them.

One of the first things you’ll notice once you start meeting these hordes of adult Aspies, is that a lot of them are female. Mothers, wives, grandmothers, ladies content to be single, and also a whole bunch who are looking for boyfriends.  If this is news to the folks running autism research programs it sure isn’t to the people who sell Princess Leia slave girl costumes.  They’ve known it for about 30 years now, which makes them youngsters compared to the guys who sell Lord of The Rings elf ears, Star Trek’s Yoeman Rand mini-skirts and boots, or Renaissance era bodice making supplies.  There are lot of Aspie/Geek girls out there making the best of what nature gave them in their search for romance.  

And they’re finding it too.  Take a minute to look at: www.offbeatbride.com, where you can find ideas for fandom wedding cakes (think Dr. Who, Transformers, Portal, Lego, Pacman, or mathematical equations); geek wedding favors (like personalized gaming dice, L-O-V-E computer keys, or space invader chocolates); and presents for the wedding party (like life-sized light sabers or cufflinks made from watch-parts.)  Check out Google to see what’s hot in geek wedding dresses.  Zombie brides are in, as are Steampunk, electronic-ala-Tron, superhero, Victorian gothic and the newly popular vintage carnival bride.  (Moms, take notes on all this wedding stuff – you need it one day, trust me.  And don’t be surprised when sometime after that, you’re out shopping for an R2D2 baby bonnet.  Better yet, learn to sew.  It’ll save you trouble in the long run.)  

Back to Dr. X.  The whole reason I’m telling you about this conversation is not to point out that he’s nearsighted when it comes to his research.  It’s to remind you that although our social scientists are a clever bunch of folks who are working really hard, they’ve still got a lot to learn when it comes to autism.  As far as I know, most of them haven’t even checked out the local Star Trek convention to figure out the proper protocol for picking up a Klingon chick or discovered the rules to one-ups-manship when it comes to quoting cult movies.  Until they can explain to me how leadership is determined in a Dungeons and Dragons raiding party, I won’t believe they fully understand social functioning in Aspie-land or the future of our kids.  And don’t you believe them either.  Take what knowledge you can get from them but don’t let their current understanding of autism discourage you or limit your child. 

I’m sure a lot of you reading are still thinking about that young man in the beginning of my story.  You want to know if the poor kid went away thinking he was a mutant who’d never find a sweetheart.  (And you want to kick Dr. X in the shins.)  Don’t worry, I set the guy straight.  It wasn’t hard.  I just pointed to the folks on my right, the famous Aspie couple who’ve made a living the last several years on the lecture tour, talking about their lives together and their relationship.  That boy has got a lot of examples of happy couples out there for inspiration.  Don’t worry, somewhere out there a cute little nerd-girl is waiting for him, Pokemon costume and all.

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