Blessings

I've been reading internet comment sections again.  I know . . . I know.  I've been trying to stop, but it's so hard.

Sometimes in comment sections of stories on autism, you run into a particularly . . . righteous type of individual.

"Your child is a blessing from God," they say.  "Special parents get special children."
"Please stfu, you're being insulting" you say.
 "How could that possibly be insulting?" they reply.  "I just called them a blessing.  My autistic child is a blessing, too.  They're special and so is your child."

And on it goes, until the internet explodes all over their special faces (hopefully).

Don't be this commenter, well intentioned as they may be.

Why is this insulting?  Let me count the ways:

• You're setting my kid apart from everyone else.  I get that you're trying to do it in a nice way, but he gets enough of that. Let him be himself without calling it out.

• Autism is part of who my son is, but we try not to let it define him.  He's not a special angel, he's a kid, who does normal kid things most of the time.

• You're lumping all special needs kids together.  Separately.  Let's try for inclusion.

• It's patronizing as hell (that's when you talk down to someone).  I stole this from a meme because it is perfect (sorry for the lack of attribution, I have no idea who the source is).

• Special needs parents don't need pedestals, we need support.  If you call us heroes, you assume super powers.  I'm an ordinary person.  Assume I can tolerate what you could tolerate.

Just a friendly public service announcement.

Also, don't say, "this kid just has asperger's, it's not a big deal."  I will come to your house.  And my kid will teach you a lesson.

Fears

I'm a middle aged white guy who wears a suit (or some close approximation thereof) to work most days, so I don't worry much about cops.  Well, I didn't.

Then I had a kid who is the worst at respecting authority.  If you tell him what to do and you sound angry, he's probably going to hit you.  Which is a problem in general, but is amplified with police officers.

I have already started trying to work with him on how to act with police officers.  So far, I have been extremely unsuccessful. I fear for his future.

Keep in mind that he is four.  If you think this is too young to worry about these things, please read this article about use of police for discipline in our kids' schools. Six and seven year-old kids get arrested for meltdowns in this country, and students with disabilities are arrested at about twice the rate as neuro-typical students.

Diagnosed as autistic, Kayleb was being scolded for misbehavior one day and kicked a trash can at Linkhorne Middle School in Lynchburg, Virginia, in the Blue Ridge Mountains. A police officer assigned to the school witnessed the tantrum, and filed a disorderly conduct charge against the sixth grader in juvenile court.

This is simply the criminalization of autism, and that first interaction led to a spiral of negative consequences for Kayleb.  In a separate, but related, incident, the officer grabbed 11 year old Kayleb, who responded by trying to push the adult officer away.  Kayleb was charged with felony Assault on a Police Officer for his attempts to protect himself.

We're a few years away from 11, but I know my kid.  There is no doubt in my mind that he would respond just as Kayleb did in that situation.

This is far from the first article to strike fear in the hearts of autism parents. Many of my friends who read the story of Neli Latson earlier this year saw parallels between his reaction to a police officer's physical attempt to impose his authority and their own children's behavioral patterns.  Many of us fear even a single interaction between our children and law enforcement, because children or young adults who, constitutionally, cannot bend to authority, cannot be subtle or control their emotions, are likely to fall into an escalating cycle of violent responses to aggressive actions.

Rule number one for interacting with my boy: don't put your hands on him when he is upset. He will hand you your ass.  Or bite you on it.

There are many autism parents who will not call the police despite being in physical danger. I read an article last year about a mom who built a safe-room for herself for use during meltdowns.  She refused to call police because she was (justifiably) afraid her son would be shot, but needed a place to go to ensure her own safety.


If the system is broken, you have two options:  try to fix the system we have or build a different system.

I don't think I will ever be comfortable with my son or a child with similar neurology to him interacting with an armed police officer.  A new system is the approach I would take if I could.  In an ideal world, I would want an alternative emergency system for parents or caretakers facing a mental health crisis.  I would want an unarmed response.  I would want social workers and crisis counselors, not police officers.  I would want automatic diversions to crisis treatment centers for folks with existing mental health diagnoses.

In other words, I want my son to be given reasonable accommodations for his disability. 

Is that really too much to ask?

Experts

Not all "experts" on autism are good people.

Not all autism service providers are good people.

I hope this is obvious, but if you're not sure if a therapy or treatment for your autistic child (or, hell, your NT child) is appropriate, trust your instincts.

If you are trying to get help for your child and the therapists refuse to treat your child like a human being with normal, developmentally appropriate needs, speak up. If they won't accept boundaries you set, end the relationship. 

Your kids are kids.  Make sure they get a childhood.

Bestest

Flynn's teacher sends out daily email reports, in which two kids in the class narrate what happened that day.  It's a pretty fun read, b/c the kids are 4-5 and super silly. 

Today's report had this gem:
"At movement I did everything that Flynn did because Flynn is my BEST BESTEST BEESSTT friend!"

Day.  Made. 

Not a bad kid

"You can't do that to my son."

"Why?  Is he a bad kid?"

"No, of course not. He's just really sensitive to touch. That probably hurt. That's why he kicked you."

The other day I was at a birthday party with Flynn - his friend was turning 5. 

Side note - on the way there, Flynn told me his friend was turning 6, because they had already had a party at school earlier in the week for when he had turned 5.  Good logic, but a poor grasp of how long a year lasts.

The birthday boy's family was large and gregarious: lots of demonstrative affection.  The bigger kids were constantly hugging, carrying, and rough-housing with their younger siblings and cousins. 

It was nice to see, but completely foreign to my familial culture, which is . . . I want to say . . . a bit puritanical?  It was also scary, because of how Flynn has always reacted to unsolicited and unexpected touch.  Sure enough, near the end of the party, the kids lined up to do something fun and Flynn was behind an older cousin of the birthday boy. The boy was excited, turned around and grabbed Flynn hard by the shoulders, jostled him, and got a kick in the shins for his trouble.  Would have been a lot more serious if I hadn't intervened immediately.

We get a lot of tour groups here in the center of DC. I see these 10 year old boys horsing around, roughhousing.  I don't know if he's ever going to be able to handle that.  If he knows the kid really well, he might tolerate it.  But not right now.

I don't know how he's going to survive middle school.

Imagination

"He can't have autism, he has an imagination.  Kids with autism don't play creatively." We got this quite a bit when we were thinking about whether Flynn could potentially have autism.

For a lot of reasons, this is silly. One of the stereotypical autistic "traits" is increased associational ability, though your mileage will vary, of course. Imagination oftentimes appears as simple as association of one event with another, so a car is like a Gup (a boat on the Octonauts - keep up, people), and if we are going really fast down the road, it's like zooming through the water, and suddenly I hear from the back seat that "We're in the Gup X, and we're zooming down deep, deep into the midnight zone!!!"  Wow, he's so creative!

Scripting can be creative as well.  If Flynn says something from a show in a new context, oftentimes he is seeing an association I've missed, as when he spots an emotional or situational similarity between that situation and his current reality.  But sometimes he's using a script to express something unique, for example creative use of a funny script to get a laugh in a serious situation.

Flynn also likes to create unique characters, similar to familiar ones.  So he makes up sea creatures that are, for example, based on ones he sees in the Octonauts, but bigger and scary instead of funny.

Creation of entirely new situations or characters I haven't seen much of, but I have trouble doing that, and I'm not . . . a four year old.

Unfair

Just this morning, reflecting on how badly Flynn took my 2 day absence, I was thinking about the fact that I can never die. His daddy is his rock; his source of stability. It's nothing that I've done, it's just what he decided from a very early age. I am the person he needs.

I know that a lot of autism parents feel this way.

This afternoon I learned that my friend Jim, who is a superstar in the autism community, lost his wife Leslie to breast cancer.

I'm so sad for Jim, and I hurt for his two girls. Life can be uniquely unfair.

Getting Real

One of my favorite internet expressions used to be "that makes me stabby," as in, "when people tell me my son doesn't look like he has autism, it makes me stabby."  As in, "I want to stab a fork through their eye and into their fucking brain."  Boom.

Funny, visual, totally divorced from reality, it's the internet expression hat trick. I'd never stab anyone! Isn't that a funny thing to say?!?!  Me! Talking about how I want to stab someone!?!  Me! 

Then my kid actually stabbed someone. That was an exciting phone call from the principal, let me tell you.

"Hello, sir.  I'm afraid we're going to have to suspend your son, Flynn.  He stabbed someone at school today."

What.

The.

Actual.

Fuck?

My blood pressure climbed about 40 points in a second.  Also, I may have shouted at the principle.  Quite a bit.  Things like, "you realize that he's a four year old!?"  And, once I learned the kid he stabbed was "playing zombies" and pretending to eat peoples' brains, things like, "you know he has autism, right?" and "You are punishing him for having a disability!" And, "He's extremely literal. He probably didn't know the boy was pretending."

To be clear about a few things, I felt very bad for the other kid and I am not blaming him at all for doing a normal thing that kids do. I was mad at the school, which was on notice that Flynn needed additional supervision at all times, failed to provide him with that supervision, and then suspended him when predictable social misunderstandings led to a predictable outburst.

The principal, shockingly, understood why I was so upset.  His son is autistic too.  But he suspended Flynn anyway.  To "protect the school."  Or something.  Later, when explaining why the suspension was overturned (because you'd best believe I fought like hell against that bullshit) he said that the electronic record keeping system required that he enter a suspension when recording the event.  That makes me . . . well . . . not stabby, but . . something.

Getting to Acceptance

I've already talked quite a lot about why we're not promoting autism "awareness" this month (as MammaFry says, we're already pretty aware).  We're all about that acceptance around here, and acceptance starts at home. Everyone's got their differences, and they're all okay.

But that's not to say that getting to acceptance (even self-acceptance) is always easy. As I assume a lot of the people reading this know, there's an entire sub-genre of adult autistic writing devoted to the awkward childhood play date.  For example, the story at the beginning of Look me in the Eye, where J.E. Robinson hits the other boy in his sandbox for playing incorrectly and then pets a little girl like a dog to try to make friends with her.  M. Kelter has a few good examples from his childhood, as well.

Alienation. Loneliness. Rejection. This is the reality for a lot of our kids early in life.  As M. describes it:

I lacked body language and was not picking up on the nuances of non-verbal cues. I was blind, in other words, to a large portion of the shared context that I experienced with other kids.  Needing people, interested in others, I walked- repeatedly- into the buzz saw of rejection.

My self-confidence eroded. I became quiet, withdrawn. And afraid.

Sounds pretty familiar.  My boy has spent most of his life being either afraid of his peers or making them afraid of him. His social challenges have caused depressive behaviors, a negative self-image, and worsened his anxiety.  I can't count the number of times he's told me that he's bad, he's evil, he's naughty, usually after getting overwhelmed in a social situation and either hitting other kids or otherwise struggling. He's called himself stupid on multiple occasions.

He's four.

He already knows he's different.

Let's not make it worse by further stigmatizing his autism in the name of awareness.

Let's make it better.

So what do I try to do to support him? First, I use what I know about his differences to help him connect with others. I also try not to set him up to fail.  I know that he hates sharing and is overwhelmed by busy and unstructured environments. Other kids play wrong: he's not likely to follow other children in child-directed group play. So I try not to put him in environments that force him to do these things. When he has to do these things, I try to get (or give) him the support he needs to be as successful as he can be (which usually amounts to adult intervention and mediation).

He has strong interests and will often follow along adult-directed group play.  Designing play that is cooperative rather than competitive is vital. If I can incorporate his love for the Octonauts, space, or sea creatures, total win.

I also try to be very explicit about social rules, and going forward I hope to have lots of detailed conversations about how to meet his social goals. This hasn't really been possible yet (I mean, the kid is only 4), and he may or may not be able to express what he wants socially.  But if he is, I'll be there to help him plan things out.

Finally, I have been trying to get the kid a positive outlook. Part of that has been changing my parenting style to focus on positive praise, rewards, and points of agreement. This has dramatically decreased conflict and tension in our house, and Flynn's outlook on life has improved as a result.

The other part has been to be totally upfront about his diagnosis. He already knows he's different from other kids - a parent will never successfully hide that fact from their kid. So instead, we're embracing it, making it a point of pride. He has an amazing ability to spot details I would never notice. He sees patterns I would miss. He has an incredible memory. I talk with him about the stuff that he's good at as often as I can, and if it's autism related, we own that.

Slowly but surely, we're getting to acceptance.