Tuesday, April 3, 2018

Our Autism Days & Months

In our house, every day is Autism Awareness Day.

Every month is Autism Awareness Month.

Throw in a lot of love, laughter, acceptance, horrible humor, and you have our normal, ever single day programming.

I can list facts about autism, script the entire DSM-5, but that's not going to tell you anything about the boy I'm raising, nor will it tell you about me.

His autism doesn't look like the autism we see on television.

He doesn't have a genius level IQ, nor does he count cards, love number patterns, or take college level classes in middle school. Those ideas of Rain Man helping you win blackjack are just stereotypes perpetuated by Hollywood to (1) sell tickets, and, (2) make autism seem more palatable.

He's highly verbal, but 85% of his speech is scripts from movies or social stories. If he goes off of his script, he's left searching for his words, which are often out of context and lacking syntax. He has so much to say, but sometimes, people don't want to listen.

His autism is sometimes ugly, sad, and angry. I'd be lying if I said otherwise. It's full of teenage emotions that are further complicated by the inability to process them. It's a roller coaster ride of hurt feelings, missed interactions, and an overload of empathy for others.

Conversely, his autism allows him to build the most amazing train layout I've ever seen. He can also build train models from cardboard without actual measurements. They're highly detailed. He works himself into an exhaustive state trying to finish projects, but he's always happy when he's doing this.

He has a mind like a GPS. Once we've traveled some place by car, he never forgets the route. It's amazing to me, a person who's has been lost on the way to the grocery store.

He also has problems with his short term memory, which affects how he processes language, any input such as reading, and remembering people's names and faces. He does, however, always remember dogs.

The DSM-5 won't tell you about the years I've spent as Morgan's advocate. It won't tell you about the four moves we've made across several states in order to secure him a good public education- because private schools are exorbitantly expensive, don't have to honor his Individualized Education Plan (IEP), nor do they even have to accept them.

It also won't tell you how bittersweet it felt when I came to the conclusion, along with his team, that the very best place for him, academically and socially, is in a solely classroom with his autistic peers. He cannot learn in a typical setting at all- and that's okay.

None of the articles are likely to mention the friendships and family members we've eliminated from our lives because of a lack of acceptance and understanding, not to mention a grab bag of other contributing factors.

Autism isn't a word to be feared, but a person to be loved. I forgot who said that, but I've always appreciated the sentiment.

The factoids you and I will see this month won't tell you about the wonderful person he is. They won't mention, as they give the bullet points of information, that autistics very often have an over abundance of empathy and that's it's incredibly overwhelming for us.

They definitely won't tell you how, when Morgan has a spare dollar from his allowance, he gives it to Marshall, the homeless gentleman who likes the bench outside of our building.

They can't tell you about the breathtaking bear hugs he gives, as he swamps your frame with his every growing 6'2" body to get "a good hug."

Or how he has the best belly laugh on this planet.

Or how he might need his little brother, Bay, nearby in case he gets "stimmy." Bay, Morgan says, has the softest skin (I know how creepy that sounds, but he doesn't mean it that way). Over the years, Bay has allowed Morgan to stim by "flipping" his fingers over Bay's arms and hands. Bay says he doesn't mind and will offer up his hand while in public or in the car. He wants his brother to feel calm, he says.

Every outing longer than an hour long has a quick escape plan. Some things, like large shopping trips, are put on hold until there can be two parents present. Noise cancelling head phones are never far away, neither is a weighted blanket or a sensory sack. Bonus points are given in the currency of peace for everyone if we have a fully charged iPad/iPod (complete with Thomas the Train episodes downloaded in case of no wifi), trains tucked into pockets, both his and ours, and snacks are on hand.

"But that sounds like most kids, doesn't it?" people might inquire.

Well, yes, but you see, my son is thirteen years old. If I was going by the idea of "most kids are like this," all of the above named plans would have been out the window years ago. He'd be pestering me for money to spend at school events. He'd be having sleep overs at friends. I'd be wondering if they're staying out of trouble.

That would be age appropriate, right? In our house, we don't "do" age appropriate. We did away with that notion a long time ago. Instead, we allow Morgan to guide us, to show us what he's ready for, and, sometimes, we nudge him a bit to try something new.

I worry that Morgan will never have a girlfriend (he has expressed a recent interest, but I think it might be scripting), a close friend, or even a job. I know he's capable of all of those things, but I also know that anxiety of the unknown, other people's judgements, and societal expectations of how someone his age should behave will have a lot to do with obtaining those goals.

He knows his triggers and his soothers. He actively avoids (sometimes by bolting like a linebacker through a crowd) the former and will happily seek out the latter. 

You might see some things about co-occuring disorders, or co-morbids. These will likely be blips on the radar about sensory integration disorder, anxiety, dyspraxia, depression, etc. You'll see the phrase "obsessive compulsive behaviors or disorder" in relation to lining things up, playing with toys only in certain ways, counting, and other rituals. You'll probably think of Rain Man or that kid from Parenthood, but don't.

Autistics, myself including, can be rough around our edges. We can come off as very prickly, easily offended, and highly emotional. What you don't see are the years of pent up frustration as we've struggled to fit our triangle selves into society's square pegs.

A lot of us have PTSD due to medical trauma and childhood abuse. When your brain is already a bit frazzled from trying to process the world all at once, the past isn't something that is easy to lay aside.

Those memes about autism will invariably mention "special interests" we autistics may hold dear. Some of us are entirely apathetic about any interests, but a lot of us love our specials to the exclusion of everything else, especially while we're engaging in them. Morgan is thirteen years old and Thomas the Tank Engine is still his favorite thing ever. My interests all center around crafting and DIY stuff, but my hobbies vary.

My autism isn't like his at all.

I have a job, marriage, family, and a good group of friends. I struggle with all of it to some degree and find it necessary to take breaks for myself frequently. I'm an excellent social mimic, as I've found a lot of females on the spectrum to be, and, since I'm blunt to the point of brutality, people know that what I'm saying is usually exactly what I'm feeling. There is little to zero guess work with me. I feel like that makes it easier to communicate.

My autism is full of organization and chaos. I'm constantly trying to make sense of context, tone, and intent. I obsessively organize certain things in my life- like time management- and leave other areas to fester and rot - like most personal relationships. I can control how punctual I am, but I cannot control how someone else will behave or react.  I feel a lot of empathy, but I don't always know what to do with it.

Awkwardness rules my life. For as much as I mimic, if I go off of the script in my head, I am liable to say things that are just, well, awkward.

Bullet points and memes about autism won't tell you about each phenomenal person on the spectrum.

They won't tell you that, for us, every day of every week, every month, is Autism Awareness Day/Month. That, for a lot of us, Autism Acceptance Day/Month happened a long time ago, we're just waiting for everyone else to catch up.

Some of the "factoids" will have you believe that we autistics shoot magic out of our behinds and poetry from our mouths while we sketch cities from memory after flying over them. But we aren't mystical unicorns with hidden savant talents.

There are stories out there of kids succeeding in school, graduate at the top of their class, and founding companies who help others like them. Conversely, there are even more first person accounts of schools failing children from preschool onward, of legal battles for education, of graduating with alternative degrees and never finding jobs, only to languish in underfunded group homes. All of those things are true.

Some people say that autism wrecks families, tears apart people, and ruins kids permanently. I don't believe in that, to be blunt. I believe in coping skills, services, and funding for teaching.

Much like typical people, autistics are individualized in our own right. I'm not like my child, or maybe even yours.

Maybe we're somewhere in between all of those talking points, warnings, and stories. 

But that's okay.