What I Want on World #Autism Awareness Day

You can light it up blue.

You can change your social media avatars for a day.

You can eat Twizzlers until you puke.

You can make cute memes with multicolored puzzle pieces, pin a gazillion blue (or purple or whatever the hell color we’re using now) ribbons to yourself, your door, your trees, your car antennae.

My questions, as a member of a family affected by autism, are these:  How does that improve my daughter’s life?  How does it improve our lives as the people who care for her?  How does it improve the efficacy or competence of those who treat her, educate her, or – possibly – employ her?  How does your blue light bulb do ANYTHING to raise the social consciousness – for more than 24 hours – of a group broader than autistics and those already entrenched in autism communities?  Because, tomorrow – April 3 – autistics and their families will still be here.  And we will still be a community growing.  And we will still be a community aging and presenting with evolving needs – needs that outlive the currently available supports.

So, this April 2, I am asking you (the “you” here being my readers who are NOT autistic themselves or caring for someone who is autistic) to make this World Autism ACTION Day.  Make today – and as many other days as you can manage – the day you DO something.  You can donate money or time.  You can educate yourself.  Both of these are a great help but  are not necessarily things you can do every day.  However, there are things you can do today and every day after today. These things will matter equally – if not more – than miles walked, dollars donated or articles shared.

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BE A FRIEND.  Being autistic and caring for an autistic person can be very isolating.  It is a myth that autistics do not want friends or social interaction.  But, it is true that friendships and social interactions can be extremely difficult for autistics to navigate for reasons as varied as fingerprints:  continuity of schedule, sensitivity to sound, light, texture; difficulty interpreting body language or facial expressions, struggles with receptive or expressive language.  Being a friend means being patient; it means a willingness to actively focus on ways you can communicate instead of dwelling on ways you cannot; and, it means meeting the autistic person where she is.  For example, you would not ask a wheelchair-user to meet you at your second-story apartment if the lift were broken.  Nor would you ask a blind person to leave her cane at home because it “embarrasses” you.  The same logic applies to accommodating an autistic person.  Asking or expecting an autistic person to visit your home, a restaurant, a museum, a park or any other place that she can’t access at all or without proper supports (whether due to sensory issues, anxiety or communication barriers) is the same as asking a wheelchair user to navigate stairs or asking a blind man to go out without his cane.  It’s unkind, it demonstrates a lack of awareness or acceptance, and it’s completely counterproductive to establishing a real, caring relationship.

Similarly, take a moment to reflect on what the families of autistic persons experience.  We have in many cases altered our lives in significant ways to create an environment in which our autistic loved one can thrive.  We have carefully curated – through years of trial and error – routines, schedules, familiar places, safe people, preferred foods, go-to comfort objects, reliable communication methods and – when all else fails – evacuation plans.  The kindest friend to an autism family is the friend who does not ask the family to fit into her social schedule / life but how she can fit into theirs.  And if that means that the friendship becomes about sharing an occasional cup of lukewarm coffee over your friend’s dining room table without so much as a blink in the direction of the chaotic pile of IEP notes, the floor littered with toys lined up like soldiers and ducks, or the unwashed dishes in the sink, let that be enough for you.  I promise you – with all of my heart and to the bottom of my soul – it is enough for your friend.  In fact, that small act of kindness may be a lifeline.

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SEE THROUGH DIFFERENT LENSES.  Yesterday, when I got home from work – as in, the very minute I walked in the door – Helene was in the throes of an escalation.  She was anxious and agitated, because her ABA therapist wanted Helene to agree to go on an outing.  So, I dropped my bag, and I sat down with Helene on the floor, and we talked.  I tried to tease out of her why she didn’t want to go.  We negotiated choices of location.  We talked about what scared her.  (And, bear in mind, Helene has very limited expressive language, so this requires artistic inquisition as well as insightful listening.  In other words, a whole lot of attention that I typically don’t have after a long commute.)  Finally, she selected a location, voluntarily put on her shoes, and headed toward the door.  She then announced, without explanation or an ounce of diplomacy, that Papa was not to come with us but to stay home with Ralph (our cat).  Her reasoning?  “Because Papa stays here with kitties.”  Circular and unassailable – kind of like a moat.  The husband and I have to do the telepathic communication thing to decide whether to fight this battle, now that she’s agreed  – after 20 full minutes of assurances, affirmations, negotiations – to leave the house.  (And, FYI, telepathy is NOT the most reliable mode of communication for decision making. *ahem*)  Thankfully, we silently agreed Papa would stay home.

On the way there, I spent the ride laying out the boundaries of our outing – where we will park, how we will walk through the parking lot, how long we will stay, what can be purchased, where we will go after we are done.  Predictability gives Helene the confidence she needs to get out of the car and walk into the store.

To recap, I’ve worked all day, just driven 70 miles in heavy traffic, didn’t even get a chance to pee before unexpectedly heading back out, I’m chauffeuring a child who whose presence is the product of a deal negotiation even Israel and Pakistan would admire, and I’m balancing my hope that this goes well and builds Helene’s confidence against my stress and worry about the fallout if it doesn’t go well, because she feeds off my moods like a vulture on roadkill.  (So, yeah, about that empathy thing … *headdesk*)

And then – RIGHT AS WE WALK IN THE DOOR – we hear the store’s cashier loudly declare to a customer that she “just can’t go there” with “screaming kids like that.”  Helene’s ABA therapist (who has joined us) and I exchange the same knowing-but-worried glance.  I’m now walking a tightrope with a bed of hot coals as a safety net.  It’s not that I give two shits what the snot-nosed, 2o-ish cashier thinks about me or my parenting; it’s that there is a real possibility that Helene appears at some point during this outing to be a “screaming kid like that.”  I care a great deal about people judging my daughter, particularly when the judgmental person thinks she understands what she’s seeing and hearing but absolutely does not.  Make no mistake, Helene screaming will NOT be due to a temper tantrum brought on by overindulgence but a genuine expression of pain from sensory stimulus or of frustration because of her language limits.

On this day, though, Helene is a ROCK STAR.  She picked her items (and even negotiated herself a slightly better deal).  She said please and thank you without prompting.  She waited patiently in line when we checked out.  She was alert in the parking lot as we walked from the store to the car.  It was HUGE and AWESOME.  It is a moment I relish because it offers a hopeful glimpse into a less worrisome and more independent future for her.

Other trips have not had such happy endings.  There have been meltdowns or escalations over things beyond our control:  loud music playing the store, a crying baby, someone vacuuming, waiting too long for a table.  When it happens, we are at the end of our ropes.  What you don’t see is the length of the rope left behind – measured by how hard we worked – all of us – to make that outing a success.  You don’t see the 20-minute (or more) lead up to even get out of the house.  You don’t see the sleep deprivation or the challenges from that day’s work at school and therapy. You don’t see anxiety and sensory processing disorder (but they are no less real).  What you see is your judgment – a spoiled child about whose behavior the parents are apathetic, overly indulgent or selfishly uncaring.

Now see the world from Helene’s point of view. Or mine. Or Papa’s. Or Nate’s. Imagine a life where there is simply no such thing as “running to the store for milk.”  Imagine a life where a “vacation” is grocery shopping or running errands by yourself.  (I mean, seriously, the opportunity to go to Target alone is so significant in my life, I actually write about that in my FB status updates and tweets.)  Imagine a life in which you stare longingly at the swings, slides and monkey bars at the park, but your crippling fear of birds and wind keep you indoors.  Imagine a life where your whole family can never make your music performance, because someone has to stay home with your autistic sibling who can’t attend (for any number of totally valid reasons).

Make an effort to see these things the next time you eyeball that kid wailing and thrashing on the floor at Walmart.  If you can’t bring yourself to project kindness, give that poor mom or dad the gift of walking away without the condescending stare, and save your comments until you are well out of our earshot.  It’s not that anyone wants your pity.  And it’s not that anyone wants your attention.  What I want is your patience. What I want is your understanding. What I want is your compassion.  And if you cannot bring yourself to share any of that, what I want is you to turn your head the other way and zip your lip.  (And, listen, whether a parent is an incompetent asshole or is struggling with demons you cannot fathom, I have YET to see rolling eyes and tsk-tsking suddenly render the offending parent or child calm/acceptable/presentable or whatever the hell else it is you want, Judgy McJudgerson.)

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REMEMBER, IT’S NOT ABOUT YOU.  I have people in my life – and based upon conversations with other autistic caregivers, I’m not alone in this – who really do not understand autism (notwithstanding their feelings to the contrary).  They bristle at the idea that Helene can’t (not won’t – can’t) go to certain places, be around certain environments or tolerate certain noises or feelings.  These people insist that Helene give kisses and hugs, that she make eye contact during a conversation, that she come to them for visits, that she sit still at the table for a meal, that she eat whatever is being served to her, that she speak to them when she is spoken to, that all kids love to get dirty so she must too, or that all kids love macaroni/hot dogs/candy so she will too.  These people take it as a personal insult when Helene doesn’t meet their expectations – particularly if she seems to do such things for other people.  If you want to do something for World Autism Awareness Day, educate yourself about why these behaviors are not about you.  This is a huge part of meeting an autistic person where she is.

I am grateful in this regard to my in-laws.  We see my in-laws most Sundays.  Our visits have evolved from meeting at local restaurants for breakfast, to meeting for afternoon coffee out, to meeting for coffee at their house or ours to meeting pretty much just at our house.  Helene’s grandparents understand the challenges she has navigating restaurants – from the discomfiting smell of too many foods at once, to the pain and confusion of hearing too many voices at once, to the physical challenge of sitting still in an uncomfortable chair or booth during our idle chit-chat.  As long as we spend family time together, the venue is not at all important outside the parameter that it is one in which Helene can relax and access us.

Helene’s grandfather also calls her on the telephone almost every night.  The conversations are short and pretty predictable.  Mostly they talk about what Helene ate for dinner (pizza or PBJ), and her grandfather tells her he loves her.  But, there are many nights – maybe more than less – where Helene refuses to get on the phone.  Her refusal is often a VERY LOUD, I don’t wanna talk to Gordo!  My father-in-law takes this in stride.  He will still shout, “I love you, prieta!” into the phone so that Helene can hear it, and he still calls her again the next night.  And the next.  And the next.  Because he understands.  There are other nights where Helene initially refuses the call only to come ten minutes later to us crying that she DID want to talk to Gordo.  And he talks to her when she calls him back, never asking her why she didn’t want to talk in the first place.  Why?  Because it doesn’t matter to him.  It matters only that his granddaughter knows how much he loves her, so he meets her wherever she is.

Today, what I want is for you to promise yourself that you will be a friend – whether to an autistic person or to someone who cares for an autistic person, by meeting your friend where s/he is.  You will try to see behavior from a new perspective, granting compassion without (or at least before) rendering judgment.

Awareness, acceptance, understanding … I don’t care about the label.  I care only about the genuineness of the affection motivating the action.

 

Give us an “F”: April, Autism, Awareness, Acceptance, Action, Advocacy and Antagonists

I had big plans for April, which is autism awareness month. I had this idea that I would make it my autism “action” month – 30 days of doing things to improve the lives of people on the spectrum and those who care for, support and educate them.

I started with this:

(Image in video is via Jill at Yeah.  Good Times., who awesomely coordinated this event (and it is now an annual memorial).  Music is Adagio performed by Kronos Quartet.  You can listen to the album here:   You can buy it here.)

There are too many names in this slideshow.  Too many.  And it is hard to imagine how anyone – anyone – could say anything to disparage a memorial event the purpose of which is to remember the lives of autistic children lost after wandering.  But, this is the Internet, yo.  It is the virtual playground of trolls, the cyber-land of nutters, the fiber-optic assembly of asshats.  THEY WILL FIND A WAY!  Commenters criticized the wording of the memorial avatar.  They criticized the organizers of the event for not being autistic (or autistic “enough”).  They criticized the parents of deceased children for their children’s deaths.  It was unreal.  It was unfair.  It was unfeeling, unbecoming, uncalled for.

Since April 1, my FB and Twitter feeds provide a steady diet of criticism coming from every end of the spectrum (and I mean this both literally and figuratively).  It is now the fourth day of April, and I have had it. I feel like I’ve gone ten rounds, and I haven’t gotten out my first blog post.

Right now, I’d give the autism community a big, fat, felt-tipped red pen “F.”

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The “autism community” – as it is often called – is anything but a community.

CommunityIt seems reasonable – at least superficially so – that if you are autistic or you care for someone who is autistic, you’d have something in common – knowledge about autism.  Sure, your perspectives and depth of knowledge will vary, but it doesn’t seem beyond the pale to infer alignment toward a single goal:  improving quality of life for autistic persons along every point on the spectrum.  Of course, you couldn’t be more wrong if your ass was your elbow.  Stick your foot in the autism pool to test the water, and you will learn nearly immediately the myriad ways you are different than anyone who does not share your point of view:  you are not autistic, you are a parent, you are not a parent, you are privileged, you are high functioning, you use the wrong words, you are a person first, you are autistic first, you lack empathy, you cannot understand, you  … I could keep going.  The point is – well – somewhat ironic.  We don’t use the “diversity” of our “community” as a springboard for acceptance.  Au contraire.  The point (pun intended) is used as a sword to attack a speaker on a personal level as a means of invalidating the original author or commenter’s opinion/point of view/experience (and, for that matter, her very existence) because s/he lacks the “right” characteristics to have an opinion/point of view/experience.

Who needs this kind of “community”?  How is this helping my daughter?  Seriously, I want to know.  Because, right now, the only awareness I want to spread is the kind that keeps her away from this type of mean-spirited, destructive in-fighting.

There is no end to the litany of ways you will become “aware” that – as a parent or caregiver for an autistic person – you’re doing it wrong:

1.  If you vaccinated your child, live too close to an electromagnetic field, gained too much weight during pregnancy, drank diet cola, ate soft cheese or raw fish, waited until you were older than 36 to have a child, colored your hair, rode in an airplane, talked on your cell phone too much, passed gas on a day ending in “y” or breathed anything other than pure oxygen during pregnancy, someone will tell you that YOU made your child autistic.  And, really, what could make me feel better and be more effective at this parenting gig  than “accepting” or being “aware” that autism is ALL MY FAULT?

2.  Of course, while you are busy beating yourself up and tearing your heart apart because you “made” your child autistic, a group of adult autistic persons will be right there to kick you while you’re down by telling you what a complete failure you are as a parent and human being for having even ONE negative feeling about your child’s autism or for thinking for EVEN ONE SECOND that it is something bad or that could or should change.  This applies whether you parent a child with mild echolalia or a compulsive tendency to smear feces on the carpet and bedroom walls.

3. Your pain won’t end there, though.  Is your child one of the 1:68 US children who are autistic?  You’re faking it!  Does your child participate in ABA therapy?  You’re a child abuser!  Do you have a child “with autism” instead of an “autistic child?”  You don’t respect your child!  Do you think parenting a child with special needs, educational challenges, sensory processing disorder, language processing disorder, obsessive compulsive tendencies (oh – I’m sorry – focused joy), sleep disturbances, social anxiety, motor skill limitations and food sensitivities is difficult?  You do not love your child!  Do you want to talk or think about a cure for autism?  You’re an enemy combatant!  Do you focus on autistic children – maybe because you’re in the midst of raising one?  You are robbing autistic adults of their “voice”!  Do you have even an ounce of understanding for how a parent raising an exceptionally challenging child might reach the end of her rope when she has NO HELP and no resources?  Murderer! Murderer sympathizer! Do you fight with your school district to get your child the free, appropriate public education to which s/he is legally entitled because you are legally obligated under compulsory education laws to send him/her to school?  You are taking limited resources away from kids who can “actually” use them!  Does your child sometimes (or often) experience anxiety / panic attacks or respond to sensory overload in public places by yelling, crying or lashing out?  You are a lazy parent who overindulges her child! Do you ever wish you could travel, dine in restaurants, see a movie, cook only one meal at dinner or do any other activity you used to do before accommodating your child’s needs became your paramount concern?  You are a privileged asshole!  Someone call Child Protective Services!  Do you support [fill in autism-focused organization here]? You are a moron!

I’d like to say that this list is tongue-in-cheek, but these are frighteningly accurate paraphrases of comments I’ve read in response to blog posts, news stories, articles, videos, etc.  And, as a consequence of all this, I am now “aware” that the biggest danger to my daughter really isn’t the broader public and it’s “ignorance” about autism.  It’s the damn Internet and the people who think a wi-fi connection and a keyboard entitle them to harshly criticize the heart-rending/difficult/painful AND the joyful/amazing/euphoric experiences of being autistic or loving/caring for an autistic person.  Have I gotten some sideways glances and unsolicited advice about my daughter from strangers when we are out in public?  Yes.  But, those incidents are few and far between, and they DO NOT outnumber the times when a stranger has offered an unsolicited POSITIVE remark.  No one has ever had the chutzpah to say to me face-to-face some of the awful, hurtful, mean and provoking things people write to me (and other parents) on the Internet.

So, this month, I won’t ask you to light anything up blue, to sport any puzzle pieces or post memes about being “au-some.” Really, when you think about it for just a moment, autism “acceptance” comes down to little more than just being “aware” of someone other than yourself, being a patient, decent, kind human being, and thinking before speaking.  If it makes you feel better/productive/more informed, go ahead and read about Carly, Temple, John or what was curious about the dog at night.  But, if you want to do something that will make a difference in my daughter’s life and the lives of everyone touched by autism (which is ALL OF US, btw), here’s a list of my suggestions to get your started:

1.  Listen or read before you respond.

2.  Think before you press “send,” “post” or “publish.”

3.  Remember that the words to which you respond were written by a human being – a living, breathing, warm-blooded mammal with feelings and experiences that you cannot invalidate simply because you don’t agree with them.

4.  Know that the Internet is big enough for us all.  If your “voice” isn’t loud enough, find a way to amplify it; don’t blame the guy out-shouting you.

5.  Be a change agent.  If all you do is complain about a problem, you are part of the problem.

6.  Set an example.  Just because you have a constitutional right to be an asshole online doesn’t mean you have to be an asshole.  It’s a tough concept, but rights come with responsibilities; actions usually come with consequences.

7.  Choose kindness.  Autistics often implore others around them to presume autistics are competent.  I implore everyone – on the spectrum and off – to presume competence.  There is no one particular state of being or experience that applies to all – neurotypical, neurodiverse, autistic (pick your label).  Sweeping generalizations and gross assumptions are never the right choice.