Tuesday, June 30, 2015

Best Practices

When Flynn was diagnosed with autism just before his fourth birthday, I knew next to nothing about it.  I mean, I knew him and his "quirks" very well, but if you had asked about the interplay between those quirks and the diagnosis, I would have given you a blank stare.

A year later, I've educated myself. I probably read more about autism daily than most people read in their lives. This sums up my philosophy pretty perfectly.

So what have I learned in the last year? What can I share with you about how to interact with Flynn or others with autism?  Here are a few lessons I've taken away.  Some of these apply to neuro-typical kids as well, but for kids on the spectrum they can be absolutely critical.
  • Be quiet.
You know those teachers and direct care workers whose voices dominate the whole room?  The ones who are always so excited to see your kids in the morning?  "Flynn!!! Great to see you this morning!" they exclaim.  Flynn shrinks against me and buries his face in the side of my leg. If he could sink through the floor, it's clear he would.  
I just want to shake these folks. Why are you still talking to him like this when his response has been consistently negative for nearly a year? Even after a week you should be changing your approach.  I know you're an enthusiastic, energetic person - that's great.  Most kids probably love you for it.  But if a kid responds poorly on a consistent basis, maybe stop it? 
For Flynn, loud is bad. Transitions are bad. Talking to people is hard. Greeting him is great, but please try to be calm and quiet.  Don't immediately demand his attention and ask for complex social interactions that are extremely challenging for him.  Let him settle in before you go there.
  • Pleasantries get ignored.
Scene: Every morning in the hallway on our way in to school.
Annoying art teacher: *stands in front of us* "Hi Flynn!!! How are you this morning?!?"
Flynn:  Fails completely to respond.
Me: "Oh, hi.  He's fine, thanks." *walks around her*
If I ask him how he's feeling after he's been awake for some time and had time to adjust to conversation, he'll usually say something like, "Pretty good!"  It's adorable, because he really considers the question seriously and wants to give me an honest answer. Because literalism.  Flynn still doesn't understand that some things are said merely for social posturing.

Shifting attention is a big effort for a lot of kids on the spectrum.  If Flynn is focused on something else (like getting to class without melting down) and you say something benign (to you) like "what's up?" or "how's it going?" he will most likely fail to notice your attempt to engage him.  Less frequently, if he does try to engage, he has to switch his mindset from whatever he's focusing on, attempt to understand your small talk (which, if thought about literally, will often make no sense), check in with how he's feeling or what he's doing, or what is "up," and produce a response for you. 

While I have been trying to teach him (and hope that he soon understands) that these types of interactions are merely formalities, he hasn't gotten there yet. And at this point it's much more important to me that he successfully makes the transition to his classroom than that he interacts with the art teacher in a "socially appropriate" manner on the way there, so for now I will handle her for him. 
  • Get on his level.  
If you really have something to talk to Flynn about, or something cool to show him, awesome! I love when adults are curious about his interests and all the neat things he's learning. He's a fascinating kid.

But you should know that he has a lot of trouble knowing when to pay attention to you. There's a lot of random conversation out there, not much of which is interesting, so if  you want his attention, make it obvious.  Get on his level.  Show him something.  Be direct, and patient. 
  • Keep it simple.
 Processing problems are common for kids on the spectrum.  Joint attention is a common difficulty, as is sensory overload, as is simple delayed processing.  Get his attention first, then use simple language and sentence structure.  Talk slowly.  Never doubt that he's extremely intelligent, but there can be a lot of interference between your words and his mind.
  • Engage him through his interests.
If you really want to have a conversation, ask him something about space or the ocean, ask what his favorite tv show is, ask what character is his favorite.  He will tell you all the fuck about it.  You will hear more than you ever wanted to hear. 

This is pretty common for spectrumites.  Once they're on a track, they stay on it until the track runs out.  Flynn has been taught pretty well to stop when someone requests a "time out."  He will take a break and let you interject something, though he probably will tell you that he was not done.  

A friend of Flynn's who is also on the spectrum loves the alphabet.  So I play with him by working with letters: spelling, arranging letters into shapes, making letters out of other things, making funny pretend words, etc. 
If you're going to meet a kid on the spectrum, ask the kid's parents about their interests.  They will tell you the way in.
  • Don't force eye contact.
For the love of God, don't force him to look you in the eye.  He'll fuck you up.
  • Don't be surprised if we leave.
Most of the time I really enjoy parties and play-dates, and so does Flynn. Sometimes we enjoy them a bit too much. It's pretty easy for him to get overwhelmed.  Even if you don't see it, I'm watching closely for it. When he needs a break we'll either find a quiet place to relax or we'll be out of there.  Sorry!  It's in everyone's best interest.
  • Prep your kids.
So . . . this one time, I went on a trip with my brother and his daughter.  He knew Flynn had autism, but the diagnosis was fairly new.  I guess he wasn't sure what to say to her about Flynn, so he erred on the side of saying nothing at all.  She had no idea what to expect.  Flynn was moderately obsessed with trains at that point, so when it came time to play inside a real steam engine, Flynn needed to be the conductor, to pull the whistle, and to turn all the valves.  He was not about to let another kid change the way he was playing, even his cousin.  My niece, not knowing why he couldn't just play along with her, got really upset with him for being so "mean." 
This is not to bash my brother (much).  Most parents don't know what to say to their kids: that's fine.  Here's my recommendation.  "When you play with Flynn, he may want to play in ways that seem odd to you.  That's fine.  If you want to go along with it, you'll probably have fun."
Sometimes Flynn plays well with others.  Sometimes he needs constant supervision.  I can't predict which is going to happen.  If it's a good day, awesome!  If not, let me handle him - I'll do my best to direct him to activities that will lead to minimal conflict.  If he gets stuck on one thing and it's leading to problems, it would be great if you could tell your kid that he'll be done in a bit and they can come back when he's done.  I'll make sure they get a turn.
 So that's it!  You're ready to hang out with us, and all it took was a 1000 word essay!  Fun times lie ahead.  See you soon!

Sunday, June 21, 2015

Happy Father's Day!

Me holding Flynn in the hospital.  He was 1 day old.

I don't think I've ever been as happy as I was in Flynn's first year of life.  I mean, look at this kid - it's just ridiculous:

Whozat lady?
Have you ever seen anyone that cute? I mean, other than your own kids, obviously.  Okay, maybe I'm biased, but he was pretty adorable, and it just got better as he got a little older and more expressive.

Happy boy.

If there's ever been a kid who could dispel the stereotype of the withdrawn and isolated autistic kid, who lives a life without an emotional range, it would be Flynn. He's always been filled with an immense capacity for joy. I mean, just look at this kid.  Again!



Okay, enough pictures.  I think you get the idea.  I love this kid.  He's hilarious

Now,  Flynn has a lot of extremely powerful emotions.  As he's gotten older, they're nearly as often overwhelmingly negative as they are astoundingly positive.  But we live for those times when he's the complete personification of joy.  It's a powerfully contagious emotion, and one I hope to see a lot more of in the coming years.

As a dad, I try to be pretty relentlessly positive, but you can easily get caught up in the difficult moments and forget to appreciate the incredible blessing that fatherhood really is.

We're so lucky that we get to help create these little beings, and then watch them grow up to be. . . . whoever they are.  We get to help shape their outlook, their perspective on life.  To help them become complete people.  That is an amazing responsibility.

I have so many hopes and dreams for my boys. Mostly, I hope they can do something that brings them joy and helps make the world a better place. Since Flynn's diagnosis, my dreams for him have developed, but have in no way diminished.  In the next year, I hope to help him focus his energy on the joys and beauty of life.  I hope to help him learn more about his gifts and strengths, and how to harness them. Most of all, I hope to help him find peace, joy, and grounding in a world that can be challenging for him to live in.

My boys are the best thing that ever happened to me.  Understanding that makes my father's day a pretty special one. 

Wednesday, June 17, 2015

Acceptance and Privilege

An old picture of Flynn with a truck
I've written about my enormous level of privilege before, but not in the context of autism, specifically. 

As a parent, I try to read as many perspectives as I can, and there is a clear divide in our community between folks with severely affected children and my own perspective as a parent with a kid who would likely have been diagnosed with Asperger's Syndrome a few years back.

I've long been in the "accept my kid exactly as he is" camp, but perhaps this is just a reflection of my own privilege and that of my family.  Would I feel differently if my situation were different?  For example, a friend of mine wrote this wrenching Facebook post during Autism Awareness Month:
My son's form of autism is fairly "serious", so you won't hear from me that I wouldn't have him any other way, because you bet your ass I would, even though I love him fiercely, just the way he is. And yes, those two things can both be true.+
Her son is entirely non-verbal and has no alternative means of communication, despite having attended an extremely expensive private autism-specific school for several years.  He is likely to need one-to-one support for his entire life.

That's a hard reality to confront and accept.  Other friends of mine are also struggling heavily right now, as they are coming to terms with the limitations that may exist for their autistic children.

As for me?  I don't want to change my son and I'm not mad at autism. Autism is a very clear component of my child's personality - it doesn't define him, but it's sure as hell a part of who he is. The extremity of Flynn's interests, his behavior, his sensitivities, his need for structure and stimulation, all of these are incredibly intertwined with his autism.  There's quite simply no way to lay down a marker and say, here is where the autism ends and here is where Flynn begins.

As such, I've never been one of the parents in the "fuck autism" camp.  I don't want to get rid of his autism, and I never will.  I can't.

But maybe that is just a component of my privilege.*  Flynn can talk to me.  He can explain his interests and obsessions to me.  We can talk about them, and I can introduce new interests.  He can talk through his powerful emotions and difficult moments.  I have a way in. 

But what if I didn't have a way in and he didn't have a way out?  What if I was convinced he was intelligent, but I had no way to talk to him?  What if I couldn't even tell whether he was intelligent?

Don't get me wrong - a lot of the time Flynn isn't able to express himself.  Language can be hard for him, and his needs and feelings often aren't expressed accurately or fully.  But what if he didn't have a way to tell me anything, other than through behavior?  And what if that behavior was often obsessively repetitive, serving the need for self-stimulation and regulation rather than other needs?

Well, that would suck.  A lot.  And knowing how powerfully I love my son, I'd probably want to change that.

+This quote is shared anonymously, with permission from its author.
*None of this is meant, in any way, as an excuse for ableism in language or behavior.  Autistic kids deserve respect, no matter what, most of all from their parents.

Wednesday, June 10, 2015

Success!!! For now!

Today we formally added a dedicated aide to Flynn's IEP for the next year!!!

It took an incredible amount of hard work, and we're still not certain whether it was a good faith decision from the school system or if the fact that we retained a lawyer pushed them in the right direction.

I'm still upset that it took this level of effort and advocacy, when it has been obvious that he needed an aide for over a year, but for the moment I'm going to try to enjoy this unfamiliar feeling of success.

Tuesday, June 9, 2015

Acceptance and Diversity

I'm incredibly fortunate to be sheltered in groups that work to support my son as he is and that work to include adult autistic people and perspectives.  I have learned so much from these groups, in particular from adult autistics who have been where Flynn is today. 

I'm very grateful for these sheltering communities, but it's always a painful shock when someone intrudes on a space I consider safe with attempts to impose "expert" viewpoints, which, to me, are both incredibly offensive and truly harmful.

This . . . idea . . . that we can or even should be working to "cure" a child's "symptoms" of autism, in other words, to reduce or eliminate stims, to increase eye contact despite its discomfort, to remove patterns of focus or intense interest . . .  This idea is still powerful in our community. 

A lot of people think they know what is best for our kids, or even believe that they know our kids better than we do, simply because they have studied autism and are "experts." 

Anyone can call themselves an expert.  I would not presume to do so, but here's what I know as a parent:  forcing an autistic kid to try to conform to a neurotypical ideal of "normal" is actively harmful.

Work to provide your child with positive assistance in communication and in understanding peer interactions. Work to reduce behaviors that could be actively harmful to others.  These things are fantastic.  They are not antithetical to autism.  The viewpoint that autism is a challenge to rise out of or overcome. . .  This is neurotypical privilege. Stop it. 

My child, his manner of thinking, his diverse perspective, is equally valuable to any other child's.  His neurology is no worse than yours.  It may lead him on a different path from you or me, but that path is only different, not less.