Have You Been Carly’d Recently?

Carly Fleischmann is an amazing young autistic woman who has gained notoriety for achieving a “breakthrough” in her “severe autism”, learning how to communicate by typing on a computer.

Most of us have already heard of Carly. We make it our business to keep up with autism news stories.  And make no mistake, Carly IS amazing.  It’s just that…she’s also possibly an anomaly.

When people see Carly’s story on 20/20, they are inspired. They’re inspired because people don’t expect someone with severe autism to be cognitively equal to non-autistic peers.  It’s the truth.  When we see someone that can’t communicate, can’t control their body movements, and their behavior is challenging, we just can’t imagine that their thoughts and feelings could mirror our own.

The challenge with someone like Carly is two-fold.  First, it brings our bias and prejudice about autism into stark outline – we don’t believe that autistics are equal to non-autistic people.  When we are shown a legitimate example of someone learning and overcoming their challenges so their voice is heard, we are amazed and awed by this wondrous achievement. It’s as though we didn’t believe the possibility existed that she was a whole person with her own thoughts.

On the flip-side we have another problem, and that is with people generalizing Carly’s achievements to anyone and everyone they know who is autistic.  Just about everyone I know has been “Carly’d” at some point, which means that some friend or family member was compelled to share Carly’s story with them, because “maybe it will work for your child too”.

Carly has become our very own Lady of Lourdes. I fully expect to see her image on a piece of toast, or embedded in someone’s granite counter top.

While everyone has their own unique potential, not everyone will have the breakthrough that Carly did.  The big truth about autism that no one wants to talk about is that sometimes people do have autism AND cognitive delays.  Sometimes those delays are significant, and a person can grow into adulthood and still have the cognitive ability of a child. So while Carly achieved success using assistive technology, others may not.

In short, we are supposed to presume competence and equality, while not necessarily expecting miraculous outcomes.

And THIS is a major stumbling block in the autism world, and especially between advocates and parents.  Those that are active autism advocates will undoubtedly have a cognitive level that is at least close to “average”, while many parents are advocating for children that are significantly below the average, and unable to advocate or comprehend advocacy efforts.

According to an article on science20.com, about 40% of children with autism also have an intellectual disability. That translates to roughly 4 out of 10 people with autism have some degree of cognitive impairment. Now compare that to a study by Left Brain Right Brain, that shows an incidence of intellectual disability in the general population to be about 1%.  Based on these studies, it is clear that there is a higher likelihood and prevalence of intellectual disability among autistics.

Carly is a role model. And while she does serve as a wonderful example to many, she also serves as an impossible standard to at least 4 out of 10 autistics.

And for me, that begs the question, how does the autism community effectively represent and advocate for people that may never achieve a degree of independence? Are the goals of advocacy in alignment with the needs of the entire community?

The Loss of a Child

When the message went around last week that today was the day to post in support of Mikaela Lynch‘s family, and others who have lost children to elopement, I quickly responded that I would participate. Then I spent several days turning the subject over in my mind, unable to come up with a coherent idea of what to write.

The truth is, I don’t want to think about this.

I don’t want to think about the fact that 49% of autistic children engage in elopement behavior.*

I don’t want to think about a third of those children being unable to communicate any information about themselves.*

I don’t want to think about parents having to lay their child to rest.

And I don’t want to think about the guilt and pain that those parents will feel, even though it wasn’t their fault.

And the fact that some very irresponsible people wrote horrible things about the family, suggesting they somehow did something wrong?  I don’t want to think about that, either.  BUT, you can click on the following image to send a message to the employer of a writer who was particularly hurtful to the family during the nightmare they endured.  It will not give any traffic to the writer whatsoever, but will allow you to email the employer and let them know that her actions were reprehensible.

If you are the parent of an autistic child, or are a friend or relative of one, please use and share these resources:

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My deepest sympathy and most heartfelt condolences are with Mikaela’s family, as well as others who have lost their child.  It’s simply an unimaginable horror.

May they find peace.

* http://www.awaare.org/

The Truth About Special Education in Texas, Y’all

We’ve all seen the lists of things that other parents or family members shouldn’t say to an autism parent.  In light of the fact that I’ve had four IEP meetings this year, I thought I’d put together a list of things that school personnel shouldn’t say to an autism parent, based on my experience this year.

I’ve culled these little pearls from prior IEP meetings.  The most recent meeting this week was when we finally reached agreement on all of the issues.  Although they emphatically will not put into writing that his recess time is protected (because the “district will no allow it”), we’ve managed to add a number of behaviors to the BIP to prevent any interruption to recess.

1.  “We use positive behavior support, unless we think it’s a ‘typical’ behavior, then we will punish.”

Listen up.  If you are autistic, then all of your behavior comes from being autistic.  You can’t separate the person from the autism.  Everything the child says or does is through the lens of autism.  EVERYTHING.  Making this kind of statement tells me that you do not have a firm grasp on what autism is, or what it means to have a disability.

2.  “We’re trying to help him to be more like the other children.”

You just told Connor and me that he is not good enough or valued as he is.  You’re saying that he needs to “blend” in order to be valued.  It’s extremely insulting, as well as being detrimental to his self-esteem. 

3.  “We want to discourage him from wearing the noise-reducing ear muffs during assemblies, because in the real world it would be odd to walk around wearing them.”  (this was said in kindergarten)

Bitch, please.  If my child needs those ear muffs during assemblies because the noise is too much for him, then he WILL wear them.  You will not dictate what accommodations he needs.  Nor will you burden him with your “real world” concerns, especially when he’s just in kindergarten.  His ear muffs are no different than a cane or wheelchair.  Shame on you, for making your own prejudice painfully obvious.

4.  “He isn’t eligible for ESY because he has not demonstrated a regression in skills that can’t be recovered in six weeks.”

No, that is not the only criteria for ESY.  Although each state has their own rules and legal criteria, the following excerpt is from IDEA regs:

S. 300.106 Extended school year services.

(a) general

(1) Each public agency must ensure that extended school year are available as necessary to provide FAPE, consistent with paragraph (a)(2) of this section.

(2) Extended school year services must be provided only if a child’s IEP team determines, on an individual basis, in accordance with S300.320 through 300.324, that the services are necessary for the provision of FAPE to the child.

(3) In implementing the requirements of this section, a public agency may not –

i. Limit extended school year services to particular categories of disability; or

ii. Unilaterally limit the type, amount or duration of those services.

Do your research, and consult an advocate, if necessary, if you feel your child needs ESY and you are being denied, like we were.  We will be getting ESY this summer.

5.  “He knows what the rules are, he just chooses not to follow them sometimes.”

Yes, it’s called ‘autism’!  See, knowing what the rules are if asked and not being able to control your impulses are things that work in opposition to each other.  It’s not a purposeful, willful choice, it’s a lack of impulse control.  It will take him much longer to develop that impulse control.  Why not set up something he can earn for following that particular rule?

Lest anyone think they can sully my good name by insinuating that I’m not being truthful, or may be exaggerating,  I’m attaching a picture of part of a page of the IEP – the declarations page, which summarizes the conversation that took place during the meeting.

And this, my friends, is what special education looks like in Texas.  At least, in the Pflugerville ISD.  Texas falls at the bottom of the country for special education funding.  More than that, it lags behind in terms of disability understanding and awareness.  While many states forge ahead with respecting autism and other disabilities, and teaching to the student’s strengths, Texas still lives in a world where it’s considered appropriate for staff to say that the student needs to fit in and be like the other students.  THE STUDENT WITH THE DISABILITY MUST FORCE THEMSELVES TO BE LIKE THE OTHER CHILDREN, THE CHILDREN THAT DON’T HAVE SPECIAL NEEDS AND CHALLENGES.

Fuck you, Texas.

Systems don’t change overnight, so we soldier on.  The thing that helped drive us toward agreement was the fact that I employed a very tough advocate.  Although it was costly, it was well worth it.

And THIS is why I blog.

Bigotry 101

In the autism world, there’s a word that is brandished about quite regularly, as a means of shutting down conversation.  You’ve probably seen it.

Bigot

Before I go any further, let’s be clear about the definition of that word (you know I love my definitions).

Definition of BIGOT

: a person who is obstinately or intolerantly devoted to his or her own opinions and prejudices; especially : one who regards or treats the members of a group (as a racial or ethnic group) with hatred and intolerance

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So a bigot, then, is someone obstinately or intolerantly devoted to his/her opinions and prejudices.  Let’s use this definition to exam some of the situations that have occurred of late in the “community.”

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A few months back, another blogger said something jokingly, that an advocate took offense to.  Fair enough, I concur that what was said could have been perceived as unkind.  But the offended advocate then devoted an entire post to damning the blogger as a “bad person” and a “bigot.”  A public shaming, if you will.

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I then wrote a post, defending the blogger, and letting the advocate know that he could have handled the situation better.  I should not have written that post.  Not because I don’t stand by what I wrote, but because it didn’t concern me.  But I hate to see someone slandered in such a callous way.

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But by virtue of MY post, I was then branded a “bigot”.  Let’s get something straight about this.  If I disagree with you, it doesn’t make me a bigot.  It makes me someone that doesn’t share your opinion.  If I disagreed with you and was unkind to you BECAUSE you’re autistic, then I would be a bigot.  See the difference?

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In fact, I am nothing close to being a bigot.  I don’t like that advocate simply because he is aggressive and vengeful.   I don’t happen to give a crap whether he is, OR ISN’T, autistic.

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Does he have a decent site that provides good information?  Yes, yes he does.  I would not argue that point.  Does he sometimes gets his knickers in a twist and write some slanderous piece that is unnecessary and uncalled for?  Yes, yes he does.  And in my personal opinion, it’s bad judgment.

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Now unfortunately he takes things even further by harassing my friends by telling them they should not be friends with me, and they should somehow make me apologize to him.  That’s the weird behind-the-scenes stuff he does, so that he can still play the poor martyr to his followers.  But let me be clear, I don’t like him because of these kinds of things, not because he’s autistic.  He may be autistic, but, in my opinion, he’s also a kind of a jerk.

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But enough of that.  The word bigot is used in many other places and by many other people, as well.  Any time someone disagrees with a point that someone has made, the word BIGOT is thrown down as a way to banish the party that doesn’t agree.  But here’s a newsflash: people can disagree with you because there’s a flaw in your logic, not because they’re a bigot.  Sometimes people disagree because YOU DON’T KNOW WHAT YOU’RE TALKING ABOUT.

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Autistics want equality, and rightfully so.  They want the same opportunities as anyone else.  But when someone disagrees with a point you’ve made, you can’t just keep resorting to the “B” word as your defense.  Sometimes you have to actually consider that maybe the point you’re making has some holes in it.  Or that maybe someone else’s viewpoint is just as valid.  Imagine that.  Could someone else actually have a valid point, other than an autistic advocate?

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Playing the bigot card is weak.  In fact, it’s so overused that it’s become a bit of a joke.  Someone says they don’t like cats?  Then they’re a dirty CAT BIGOT!  I’m pretty sure that’s not the intent that advocates wanted, but when you overuse the same tired argument, that’s where it ends up.

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Now watch.  This entire post will be held up as a stunning example of bigotry.  But it’s not.  I believe autistics need to have a voice, a seat at the table, and the opportunity to make decisions about their lives.  And I also believe that equality means being assessed on your merits.  And if you lack merits, someone will think you’re a jerk.  Doesn’t mean anyone is bigoted toward you, it probably just means you’re a jerk, at least sometimes.

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I’ll leave you with one last example.  An autistic blogger I know wrote a great post a couple of weeks ago.  I sent a private message to the moderator at a well-known advocacy site about linking it on their page.  She told me that it wasn’t up to their standard, and in the past she’d had to edit the blogger’s writing quite a bit.  So I asked him myself if he’d posted for them before, and whether they did a lot of editing.  He said they ran one piece of his and it was a complete copy and paste, not one single edit.  So she lied because she just didn’t want to run his post, because he has disagreed with them in the past about certain points-of-view.  Is she a bigot for doing that?  NO.  She is NOT a bigot.  She’s just a liar.  And kind of a jerk.  But not a bigot.

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I have a bit of a reputation around the interwebz as a straight-shooter.  So here it is.  Quit overusing damning words just to win arguments, or to play the victim card.  We need to advocate with our grown-up panties on.

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And to the advocate that called me a bigot – stop pestering people.  This post is the closest you’re going to get to an apology.  But whether I think you’re a jerk sometimes or not, I would still work WITH you anytime there was an advocacy project on the table.  You know why?  Because we’re ALL jerks sometimes.  Yep, me too.

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And now…3…2…1, commence shitstorm.

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Are You Weird?

One of the most common things we worry about as parents of spectrum kids, besides getting them the hell out of our house someday, is whether they will be able to fit in with typical peers.  While we may not ever try to make them stop flapping or spinning because we respect them deeply, we still have that nagging feeling deep down that others will notice their unusual behavior and use that as a reason to tease or devalue our children.

Most people are familiar with the stim of flapping.  But I know that there are many other stims, as well as soothing/relaxing behaviors out there.  I decided to ask several other parent bloggers I know to describe some of the stims/behaviors in their homes, and the purpose they serve.

“Chronically picking at the insides/cuticles of thumbs, peeling anything where the surface is coming off, like bark off of sticks or paint and wallpaper.” Kristin, Running to Be Still

“Unable to concentrate unless hands are clean/obsessive hand washing.”  Jill “that nutjob with curly hair”, Yeah. Good Times

“Trichotillomania; preferences for numbers to add up to multiples of 12.” Adrienne, No Points for Style

“Twiddling fingers like they’re playing an invisible keyboard – it’s calming and feels like they’re shaking out stress.” Carmen, Stay at Home Crazy

“Typing words on the palm of the hand like it’s a keyboard; playing mental math games by assigning a number to each letter and trying to make a word add up to a multiple of 5.” Jessica, Don’t Mind the Mess

“Vocal stims/noises when falling asleep.” Amanda,Confessions from Household Six

“Twitching toes, both inside shoes and at bedtime to relax.”Jean, Stimeyland

“Chronic picking of scabs, cuticles, dry skin; scalp massages for the soothing effect; multiple blankets for weight.” Eileen, Autism With a Side of Fries

“Obsessed with using peppermint oil or Tiger Balm on the body as a sensory input; hot beverages when upset/anxious; pacing when stressed; removing and redoing ponytail when ready to meltdown.” Jo, Jo Ashline; A Sweet Dose of Truth

“Interlocking hands and moving fingers in a rapid pattern when excited or nervous.  Will also reach arms up and put fingers in hair in an attempt to hide it.” Maya, Maya’s Eye Photography

“Doodling with pen and paper.” Jen, Anybody Want a Peanut

“Vacuuming – the hum, movement and lines are soothing.” Lizbeth, Four Sea Stars

“Tapping thumbs and fingers together. Karla, Beyond the Dryer Vent

“Rubs feet together when going to sleep; cuticle picking; wall of pillows when sleeping; heavy blankets.” Anonymous, My Winter Butterflies

“Prefers crisp fabric, like denim or khaki, and fingers the fabric repeatedly.”  Patty, Pancakes Gone Awry

“Picking eyebrows and cuticles; chewing on hair or necklace; heavy blankets.”  Stephanie, On the Beans

“Rubbing fingers together; pushing hair behind ears; obsessed with word games.”  Marj, The Domestic Goddess

“Thumb-sucking; running fingers over eyelashes.”  Anonymous

“Thumb-picking; pulling at eyebrows.” Tim, Both Hands and a Flashlight

“Rubbing feet together at bedtime; face-picking.” Lexi, Mostly True Stuff

“Constant humming or singing; picking at cuticles.” Anne, Glass Half Full

“Oral fixation – chewing on straws, pencil erasers, pencils, gum; picking cuticles.” Niksmom, Maternal Instincts

“Typing on the keyboard very loudly.” Gabrielle, My Whac-A-Mole Life

After reading that list, you must be thinking, “Wow, how will those kids ever be functional adults with all those odd, quirky stims and coping mechanisms?”  And you’re right, there are some pretty unusual things there.  But the good news is that they are already functional adults, because the behaviors that each person described are their behaviors.  They are the quirks and routines of the parents, not the autistic child.

The people on this list are lawyers, accountants, healthcare professionals, entrepreneurs, computer professionals, housewives and writers.  They have families and jobs and therapy appointments and household responsibilities.  They’re your friends and neighbors.  In short, they’re YOU.  See, we all have habits and odd, quirky ways that we cope with life’s stressors.  Some developed in childhood, while others came later, when adult responsibilities took shape.

Our children are not so different from us.  It’s just that they haven’t developed the ability to “hide” their quirks as well as we have.  Flapping, spinning, repeating movie lines, jumping – none of those seems so “unique” to autism when you read the above list.  It seems that we all find ways to interact with our environment and process the sensory input in our own “special” way.

The bottom line is this:  stop CARING what other people think.  Our kiddos will make their way, in THEIR way, and at the end of the day all that matters is that they’re healthy, happy, and loved.  Anyone that would look oddly at our children is the same person that’s going home to drink too much, pick their scabs, or rock themselves to sleep.

We’re all pretty weird.  Some of us know how to hide it, and others are more organic.  It’s kind of refreshing, that honesty and purity.  Celebrate it.

A Post Worth Revisiting

One of the most powerful things I’ve ever read about being the parent of an autistic child, was a post by Kyra Anderson.  So powerful, I printed it and it hangs above my desk so that when I’m having trouble getting my thoughts out, I can look at it and be reminded of the power of words.

Here’s the link to Kyra’s post, I hope you take a moment to read it.

Opening Old Wounds

There comes a point when you’ve made peace with your child’s diagnosis.  You’ve got supports and therapy in place that work for you and your child.  You’ve had the IEP meetings, and assured that your child is getting the help they need academically.  The routine is in place, and things are moving along fairly well, and you’re feeling…in control.

And then…

Report cards or test results come home from school, as they did here, yesterday.

Last month they administered Cognitive Ability testing to the 2nd graders.  Reading the results, it was like being kicked in the gut.  My throat closed up and I fought back tears.  My mind moved toward an imaginary future, with scenarios of what my son’s life might be like, based on my own fear.  Horrible thoughts of what might become of my son someday, when I’m gone, assaulted me.  It felt like all the hard work we’d done just wasn’t enough.

Luckily, I’ve got a very supportive online group that I can go to when I hit a bump in the road.  They reminded me of some very important things, and I want to be sure to pass on this wisdom to you, should you find yourself in a similar dark place.

photo courtesy of PBS kids

1.  Your child-MY child, is exactly the same person as they were before you received feedback about their level of functioning.  They have not changed in those few moments.

2.  Our children don’t always test well.  Reading comprehension is often a challenge for our kiddos on the spectrum.  The stress that accompanies taking a test can also inhibit their performance.

3.  Whatever the test or assessment, is does not DEFINE your child.  Our children define themselves, and we are there to support them.

4.  Academic tests are not created for children that learn differently.  They’re created for the “typical” child.  Think of giving an english-speaking child a test written in Spanish.  They’ve been set up to fail because the test isn’t in their language, just like most academic tests are not in our autistic children’s “language.”

5.  If you don’t have a support system, find one.  There are many online communities for special needs parents.  But it’s imperative that you have people you can talk to that understand the situation, and can offer words of support and encouragement.

6.  Remember that you don’t control the future, you can only control what you do right now.  Letting your imagination take you down dark alleys will only lead to anxiety and depression.  And it won’t help your child.

7.  Use assessments and test results to your child’s advantage.  I plan to have the results at our upcoming IEP meeting, so I can specifically ask how they will address his learning style to tackle areas where he struggles.  And we will talk about whether he needs to be in a smaller classroom setting, getting more individualized attention.  Turn test results into tools for gaining more support for your child.

8.  Allow yourself some time to feel down.  It’s normal and it’s okay to have those feelings.  But don’t allow yourself to wallow there, because you’ve got to be ready to pick up and move on, to secure whatever support your child needs.

9.  Accept.  Accept that your child may lag behind, or not excel in certain areas.  Get the support your child needs, but remember not to push too hard, or have unreasonable expectations.

10.  Love them.  No matter what the future holds, no matter how well they’re doing in school, or how poorly, they are still your child.  Don’t be robbed of the precious moments you have right now, by worrying about a future you can’t control.

It’s so easy to let things like this open up old worries, old hurts.  The important thing is that we keep moving past that, and remember that our children are learning and growing every day, no matter what a test or assessment says.  We will be there with them as they continue to grow, and we will hold their hand and meet the future with courage and bravery.

Autism Awareness, So What?

April is Autism Awareness Month.

It’s not that I don’t care.  And it’s not about whether I do or do not support or agree with Autism Speaks.  I’m aware of autism every day.  And I tend to believe that most people are already aware of autism.  Awareness doesn’t mean anything.  People are aware of different races and religions, they’re aware of Down Syndrome and Learning Disabilities and Autism.  Being aware doesn’t give people the ability to be kind, understanding or even particularly helpful.  Opinion and perception are ingrained at an early age.

If we all really wanted to come together and make a difference, we would be supporting autism education.  If we start educating today’s children at a young age about  people who are different, and about why being different is okay, then we would begin making a difference for tomorrow.

Most large companies provide diversity training to their staff on an annual basis.  Now, we know this is mostly so they can avoid lawsuits, but there’s something to be learned from this model.  If a specific curriculum was developed for each grade level, beginning in Kindergarten, we would be turning out young adults that were armed with knowledge and understanding of differences.  If each year children learned not just about cultural differences (Does your school have a cultural diversity night?  Ours does.), but cognitive differences as well, the impact would not just be about what kind of adults they turn out to be, but it would also have an immediate impact on the rampant issues of bullying in our schools.

Education.  But to be effective, it would have to be mandatory and implemented in every school, in every city and state.  Now that would be something I could get behind.  That would be something the autism community could actually agree upon and support.

 

1 in 88 children.  That’s a lot of children to not know about.  Blue light bulbs don’t teach others about sensory challenges.  T-shirts don’t help children understand communication impairments.  Awareness doesn’t stop teasing, bullying, and shunning.

You could accuse me of being selfish, and that might be true.  This is personal.  I want other children to understand why Connor sometimes repeats lines from TV shows and movies.  I want children to understand why Connor likes to spin.  I want teachers to understand that every single action stems not from a “typical” thought, but an autistic thought, because he is autistic every second of every day and, therefore, every action comes from being autistic.  And I want the school to understand why I push them so hard to use a positive behavioral approach, rather than a punitive approach.

I want this for every single one of our children.  I want this for us parents, so we can have just a tiny bit more hope when we send our children off to school.

And I want our government and our educational system to understand that there is value in autism.  There is hope.  If only we cared enough to educate others, to educate our children.

It’s something we should not ask for, but demand.  We should demand that every child is educated about autism.  Because with education comes understanding, and with understanding comes acceptance.

Please share this post if you agree.

Spectatorship Requires a Lot of Gear

So out of the clear blue, Connor starts talking about wanting to play soccer.  This began somewhere between turkey day and Festivus.  This was surprising because we had offered many options for extracurricular activities in the past.  You know, in case there was something he wanted to try out.  But there never was until this came up.

I am not a sports person.  I could care less about about playoffs and finals and whatnot.  But I’m all about supporting my kid if he wants to try something.

But this soccer thing has really been an adjustment.  For me.

First, I had to go buy one of those camping-type chairs that fold up and can be stowed in the trunk of my car.  It will be in the trunk of my car until the day I get rid of this car, because I never have time to clean out my trunk.  So I will always be ready to do some serious sitting around, in my fancy, foldable chair.

By the end of the season this is a total possibility.

The next issue has been the weather.  We haven’t had snow like most other places (don’t hate), but we’ve alternated between 50-degree days and 80-degree days.  Every Saturday when we set up our spiffy chairs on the sidelines, it’s a toss-up as to whether I’ll need a blanket or sunscreen.  Two weeks ago I froze my ass off, and had the sniffles for a week.  Last weekend I forgot to sunscreen myself, and I went home and passed out for two-hours, with a sunburn and probably heat stroke.

Yeah, this is me. What?

Now let’s talk about bathrooms.  I’m a 40-something (cough) mom with a bad back and a tiny bladder.  This whole soccer game thing has really wreaked havoc with my bathroom schedule.  They have bathrooms at the park, but like most park bathrooms, they are beyond disgusting.  And usually they’re out of paper.  And don’t take a chance on actually touching that seat.  So I’ve got to bring my own paper and be some sort of contortionist to try and use the facilities.  And I’ve got to be drinking something during the game, to ward off that heat stroke.

And apparently there is snack duty involved in sports.  I guess each parent can’t just bring a snack for their kid.  That would be too easy, especially since we all know what our own kids like.  Nope.  Each week we trade off being in charge of bringing snacks.  So I’ve got to carry my folding chair, sunscreen, blanket, toilet paper, AND snacks.

All this, to watch some 2nd graders play soccer for an hour.

But you know what?  I may have battled frostbite, heat stroke, dehydration, and filthy bathrooms, but it wasn’t all for naught.

I get to watch my son play as part of a team.  And I got to see him score his first goal.

And he is having FUN.

But most importantly, he feels like he’s part of something.  And for a boy that’s always been different, always struggled to fit in, it’s a BIG DEAL to be part of something.

It’s been worth every single discomfort.

The Best of the Best in Autism Advocacy

Although Connor is only 7, I constantly think about what his life will be like when he is grown.  As he gets older and more mature, it will be important to introduce him to the world of autism advocacy.  All the learning and tools that his teachers and I work hard to give him will need to be complimented by an understanding and awareness of how to effectively advocate for himself and acquire necessary accommodations.

Beyond that, when it comes time for him to define himself and his place in the world, I want him to have solid examples to reference that promote a positive message about being autistic.

There are some excellent resources out there, including some great advocates (both self-advocates and neurotypical advocates).  I’ve put together a list of advocates that I appreciate for their positive approach and willingness to engage in meaningful dialogue about advocacy.  These are people whose writing I will share with my son, when he is ready.  I hope this is helpful to other parents that wonder about where to guide their children when it comes to this topic.

John Elder Robison

As a person with Asperger’s, John Elder Robison has contributed so much in helping people understand what it’s like to be autistic.    He’s written several books, the most well known probably being Look Me in the Eye: My Life with Asperger’s.

One thing I particularly appreciate about Robison is his ability to respect and understand differing viewpoints.  In an article in Psychology Today, he said “In my earlier writing, I’ve said, ‘I don’t need a cure. I just need understanding.’ I still believe that’s true for me, but I now recognize the tremendous breadth of the autism spectrum. As a result, I am now sensitive to and accepting of the views of others who do want to be “cured,” however that may be defined. My views about the ‘cure’ may differ from yours but I recognize, accept and respect differing points of view, as long as they are not harmful or destructive to others.”

He also understands the incredibly wide range of needs for those on the spectrum, and said, “When we do advocate – speaking for the benefit of a larger group – we owe it to our less vocal community members to make the lay public aware of the breadth and depth of their needs as well as our own. When we ‘advocate’ for autistic needs, we should always be clear about the overall range of needs and services our population requires.”

Here’s a speech he gave for Google employees back in 2011.

(this is long, but worth it)

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Temple Grandin

Likely the best known autistic in the United States, Dr. Grandin writes books and speaks publicly about her experience and wisdom as an autistic adult.  She’s achieved acclaim for her contribution to humane livestock handling and animal welfare.  Her ability to explain autism and how she learned to navigate the world is so important that a movie was made about her life in 2010, titled Temple Grandin.

“You have got to keep autistic children engaged with the world. You cannot let them tune out. “
Temple Grandin

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Stuart Duncan

Perhaps the thing I admire most is Stuart’s innate ability to grab you with either logic or humor in a completely low-key and understated way.  It sneaks up on you, rather than hitting you square in the face.  He blogs at Autism From a Father’s Point of View.

Stuart writes about his sons, one autistic and one not, and also talks about how he has been diagnosed as having Asperger’s.  In addition, he has also written a couple of books, Autism From a Father’s Point of View and Autism Understanding and Acceptance.  

“Never underestimate someone with Autism because there could be brilliance struggling to get out.” Stuart Duncan

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Snagglebox

Snagglebox is a site hosted by “Bec”, who has a background in psychology and two autistic sons.  This site is a fabulous resource for parents and teachers, and topics are explained simply and clearly.  This is the place to go for Autism 101 training.  As a bonus, many posts include adorable original drawings, like this one:

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There are also a number of books available for purchase, including:  The Super Useful Guide to Managing Meltdowns and Autism Preparation Kit for Teachers.

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Jean “Stimey” Winegardner

Stimey is mom to three boys, one of whom is on the spectrum.  She also officially joined her son on the spectrum in 2012 when she received her own diagnosis of Asperger’s.  Stimey has been blogging and writing about autism for several years, and has been featured many places, including the book Easy to Love but Hard to Raise.  She is the founder of Autmont, a site dedicated to autism information and events in her county.

Stimey writes with humor and insight about her journey raising her sons, and the joys and challenges that come with autism.  Her candor about her own journey through the process of diagnosis was honest and heartfelt, and helped open the door for others to share about their own neurology.

Of her diagnosis, she has said:  ”I hope that it will let me continue to try to be the person I want to be while being able to adjust my expectations of what I can do. Understanding that my neurology is responsible for some of my difficulties might help me go easy on myself for having them. They are not character defects, they are a result of the way I am wired.”

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In closing, I’ve included the definition of “advocate”.  As you wade through the information online regarding autism and advocacy, remember that an advocate is someone that supports or promotes something.  If you’re finding sites that spend more time criticizing ideals, it may be best to move on to something with a more positive and helpful stance.

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ad·vo·cate

noun \ˈad-və-kət, -ˌkāt\

Definition of ADVOCATE

1. one that pleads the cause of another; specifically : one that pleads the cause of another before a tribunal or judicial court

2.  one that defends or maintains a cause or proposal

3. one that supports or promotes the interests of another

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