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.

Sorry for the apologies

I'm done.
Finished.
Will not back down.
I just can't do it anymore.
I refuse to apologize for past and present mistakes or the way I parent my children.
I'm over the mommy shaming, the victim blaming, the bullshit.

Things I refuse to apologize for are as follows:

1. Calling my son autistic. This is a no go for me. He IS autistic, just as he IS tall, has brown hair, and brown eyes. I'll be damned if I ever apologize or feel bad when someone goes off on me for using autistic rather than "has autism." It's just silly. Can you separate the autism from him? No? Me either.

2. My sons' actions. You know what? It's damned hard to apologize for someone else. I refuse to say "I'm sorry, but he's <fill in the blank>." Parents of totally typical kids don't apologize for their children being assholes, and I don't think I should have to, either. My kids are good kids. They're usually polite, funny, and aren't embarrassing to take out in public (well, most of the time, but we'll get to that). I'm not going to ask for forgiveness when they act like kids or have meltdowns related to their disabilities. Or when Morgan scripts all the history of Thomas the Tank engine. Or when Bay goes on and on to me about Minecraft. They're being the only type of children they know how to be and, as long as they aren't being total jerks, I'm good with that.

3. Assisting my son when he's losing his proverbial crap in public. Why did I ever feel the need to do that? He can't help that the crowds are too much, that the lights are too bright, or that the noise is too loud. When he shuts down and cries, it's my job to help him, not to explain him to someone else.

4. Speaking up for disabled people, especially my son. This extends, but isn't limited to, calling people out for bullshit ableist policies and language. I'm including this blog, too. I've stayed away from here due to a fear of being reprimanded for how I feel. Sorry, but I'm out of shits to give. I'm going to say what I want and not feel bad for it because some keyboard crusader wants my head on a platter.

5. Activism and advocacy. I used to feel just the tiniest twinge of guilt whenever I gave hell to the schools, but that's long gone. I'm not going to apologize for them pissing me off, or for them not doing their jobs. The exact same thought process applies to the below:

6. Speaking up against and calling society out for the other isms and phobias- racism, anti feminism, xenophobia, and homophobia. Granted, I don't really apologize for saying anything about this now, but, after getting trashy comments about my stance on politics and humanity, I just figured I'd throw this in- don't be a dick.

7.Teaching my children about politics and current events. I assume competence with my kids. They overhear news, they aren't blind to societal issues like homelessness or racism. I feel like it's important to address elephants in the room and I want the boys to be informed. Don't tell me I'm poisoning their minds. Rather, I'm fertilizing them with something other than horse shit.

8. Believing in applied behavioral analysis as it stands now. Look, I get that ABA can have its issues, okay? But my son is exposed to ABA as a learning style and it works. He works with licensed BCBAs at his school, not in private therapy, and they've done wonders for and with him. He's learning to tie his shoes, cook, have reciprocal social conversations, and so much more. I'm not apologizing for it working for us, nor for us having a good experience.

9. Talking/writing about my children. When I write about my kids, I'm acknowledging the struggles and shitastrophies. I'm also championing their triumphs and telling about the funny things they do. Sometimes, autism is funny. Sometimes, it sucks. And, sometimes, my youngest is being a ginger demon. Each experience is okay to talk about.

10. Being myself. I'm at a place in my life where I actually don't hate myself or the things I say and do. I'm comfortable in my own skin and I don't care if others aren't alright with that. I swear, I drop things, I mess up, and I'm quirky. I like me.

11. My kids being themselves. I'm trying to teach my kids to be their authentic selves and, so far, they seem to have a good grip on what that means. Sometimes, my kids come off as weird, indifferent, or sensitive. However, they own most of that and I'm thrilled that they do. Authenticity is hard to come by in adults, but if we teach it to our kids early, maybe they'll grow up feeling that the earth is solid beneath them rather than shaky.


At the end of the day, how is my parenting affecting you? If it's not, then move on.

What Autism Has Taught Me

I've been doing this parenting autism thing for about eleven years now, knowingly for sixish, and have had knowledge of my own autism for about three years. It's been one heck of a learning curve.

In that time, autism has taught me that it's never static and always changing. Yet, whole days, weeks, months, and even years go by that seem like Groundhog Day, where the routine rarely seems to vary. In that rigid routine, though, is a constantly evolving hub of skills, understanding of the world, and hard won accomplishments- sometimes so tiny, we have to squint to see them, but they're still there.

Autism has taught me that there are many ways to slice an apple, pizza, sandwich, toast, etc., but only one correct way. Any other way than the right way will result in mutiny.

I've figured out that it is, indeed, possible, to be asked the same exact question 1,583,923 times in a day and then get asked again because echolalia.

I've learned that no amount of worrying will ever fill my bucket of fears, there will always be more things to consider, examine, and worry about some more. Because of my own autism and comorbid of severe anxiety disorder, I get the extra fun of perseverating on topics such as "what will middle school/high school be like?" "have I taught him x, y, z?" and, my personal favorite, "what's the future going to be like?" Because thinking of something like that while you're pacing and slightly manic at 3am just adds a little shot of fun to it all.

I've learned that things like milestones, time tables, and age appropriate and pretty much entirely made up and will never apply to us. Once I learned this, I was much happier.

Autism has made me realize that there are reasons why I can't learn something with just one or two demonstrations, thanks to the processing disorder side of things. This would explain why I get stuck on instructions, or forget steps in multi step problems. Morgan's the exact same way, but to a more severe degree.

I've figured out that the right fidget or sensory object at the right time can solve just about any problem, at least for a few seconds.

I've learned that I don't need to be surrounded by a ton of people who may or may not "get" me or my son. However, a small but great support network, complete with people who are willing to listen, learn, or are already "there" themselves, is key. I don't even need to actually know these people in person- I threw out the whole, "don't talk to strangers on the internet" thing a long time ago. Some of the people I've met through Facebook groups and this blog are now some of my closest confidants.

Autism has taught me that I have a resiliency within me that I never fully realized. One that will walk into conference rooms for IEPs and quietly demand the utmost best for my son and not back down until I find a way to get it.

The most important lesson autism has taught me, though, is that there are many ways for a family to be normal- it doesn't need to look like a modern Norman Rockwell painting. In our case, normal is discussion of IEPs, Thomas the Train with our eleven year old, quiet discussions with our eight year old about his worries for his brother, visiting every train museum we can find, and speaking as bluntly about autism as possible. Or, really, speaking as bluntly as possible about pretty much anything. We don't really do filters here.

Autism has taught me so much. I haven't been the most willing student at all times, and I'm still not. However, this education has been worth it because Morgan's worth it, and so am I.




What has autism taught you?

Spring Cleaning

I cleaned out my Monica Gellar closet (if you don't know this reference, we can't be friends) and realized it was a metaphor for my mental illness. It was like the Pandora's box I haven't wanted to open for years, and yet, I knew it was time. I needed to do some cleaning, both figuratively and literally. 

This is my closet now. 

                                      

Kind of pretty, isn't it? It looks organized, I have a nice little work space. Things are in specific places, and I even have a spot for my taxidermied animal thingy. 

I'm showing the "after picture" first because, frankly, it will look better in the preview picture in the link.

However, this is the before. It's bad, huh? 

The closet had been a dumping ground for randomness since the day we moved in over a year ago.  took four or five huge lawn and leaf bags of trash and four lawn and leaf bags to charity, twelve hours, and me falling down a massive rabbit hole. 

You see, as I was purging, I realized that I hadn't touched some of that stuff since we lived in Tennessee- in 2012. That's three moves, an autism diagnosis (mine), a slight mental breakdown (again, me), another severe endometriosis diagnosis for me, and so much more. 

As I was digging deep into crafting supplies, I kept wondering "why?" Why in the ever living shit did I have some of this?! I mean, at one point I was selling hair bows and accessories, so some of it made sense, but Jesus, why did I need five rolls of ribbon that were the exact same color? What the hell was going on with me when I was buying this stuff? And why was some of it so ugly?

Then, I remembered. And I got mad. I remembered Thomas and I fighting like all hell five years ago about my spending money on this shit and my denying it. The craft store was better than eating because I was steeped in anorexia and mania and I was out of control, all while trying so hard to pretend I was in control. It was when I was battling the school on IEPs, and Morgan's placement, and so much more. This was the time frame I became and advocate. 

Before that time, I broke off contact with my biological father. I fired my shrink. I fired everyone. I went off my meds. I went full blown wide open. I lost my proverbial shit. All of that was in the closet, too, in pictures, journals, and drawings I'd hidden away from myself. 

Mental illness- it had filled up bins, boxes, baskets, and bought hundreds of rolls of ribbons, and I'm not even sure how many fat quarters of fabric. I had hoarded and, scared to death of losing more things and I was losing control, I kept it all. 

I threw out guilt as I threw out cards, papers, bags, notebooks filled with manic scrawling. Rage and sadness filled me because I wondered how much time I've wasted over the years due to this crap in my head. 

By the time I was done, I felt as if I'd taken a long and hot shower.  It was as if by unleashing my compulsiveness in a healthy way, I'd been able to clean out the recesses of my brain.

How to Handle a Holiday Gathering

*I get that I've added political commentary which can be divisive. The whole point is to distract people from autism. Please take this all with the humor that was intended. 

It's the most wonderful time of the year! With that comes family gatherings where supposedly well meaning relatives say the most absurd shit ever.  I polled some autistics and parents/spouses of autistics to see what commonly gets said at the dinner table. Then, in my limited wisdom, I've created diversionary answers/rebuttal questions. They are conversation enders, if you will, and will succeed in taking the focus off of autism or your "lack of parenting skills." If you drink, please be sure to have libations readily available.


"Have you tried spanking him?" Inform your family member that you've tried every available method of discipline. And then, offer up this gem: "So, what do you think of the Syrian refugee situation?"

"Ya think he's gonna get normal at all?"Answer that autism is a life long neurological disorder, and there isn't a cure for it. Then, state, "I'm voting for Hillary. She's a class act."  *This also requires a bite of pie and a swallow or five of wine.

"God only gives us what we can handle." Take a healthy slug of wine and then, "Right now, we're all handling Donald Trump."

"He'll be fine, don't worry so much." Full glass of wine, straight into your mouth. Then, "You know who's going to be fine? The American public after we all convert to socialism."

"You are doing a complete disservice to him by labeling him!" Deep breath.. In, one, two, three... Out, one, two, three. Take a generous gulp of hard liquor, and then, "Just like we label white shooters as 'mentally ill?"

"Your son just licked me! Again!" "Ohhh, Aunt Mae, he's just testing your American patriotism." Congratulate yourself on having a rebuttal with a full glass of wine.

"You know, autism is just a fad. In a few years, everyone will be autistic." Drink. Then, "You know, Hilary 'was there' on 9/11." That'll stop all conversation.

"I feel so bad for you!" Two glasses of wine in quick succession should be funneled into your throat. Then say, "I feel really bad for Obama. He never gets any slack." 

"You/he/she can't be autistic. You aren't re******." "You're a real dick, you know that?" Sorry, I have nothing better than this.

"He'll eat when he's hungry." Grab the bottle nearest to you, drink, and then hit that person over the head with the aforementioned bottle. There is no rebuttal to this, only laughter and mild violence.

So, maybe these things won't help during the family gathering, but they will make things more interesting and possibly even divert your relatives from discussing what they think about autism for just a few seconds.

Happy Holidays!

What I want Special Education Teachers to Know

Dear sped teachers,

I've made contact with many of you as of today. With few exceptions (because there are always exceptions), you are wonderful at your job, or you strive very hard to be the best you know how. However, there are some things I want you to know.

"Grade level..."
What I love about the special education process, and IEPs, is that we have a one-of-a-kind chance to meet the child where they are, instead of where people feel they should be. Once we've established a baseline, we can work more on goals to achieve. For the most part, our experience with this has been good.

But I feel as if the special education system sets some children up for failure.

Too many teachers are forced to focus on "grade level" achievements. What if my child isn't supposed to be on this grade level? What if there really isn't a point in teaching volume, mass, and measurement right now?  What if I'm okay with my son reading Thomas the Tank instead of Harry Potter?

"On grade level" is something a majority of us veteran parents stopped caring about a long time ago.

Platitudes...

You don't always have to tell us that our children are "secret geniuses." Genius is measured in ways my son is not. I fully believe that my son is smart, that all people are, but I understand that, on paper, it doesn't appear this way.

I fully grasp that, in an IEP meeting, you are attempting to deliver news that isn't settling. But give it to us straight. We don't need a bedtime story, we need facts. Perhaps I'm in the minority of parents here, but I don't want fluff and a hundred anecdotes about the "cute" things my son may do. I live with him, I know him, and I know how cute he can be.

"Helping..."

Don't help my child so much that he cannot do something independently, like an art project. I can count on one hand how many projects have been sent home that I know my son did on his own and I treasure every single one of them. Those which were clear to me that he didn't do? They go in the trash and it hurts like hell to see someone didn't think my child's train scribbles were good enough. He's good enough.

Please tell the paras to back off. If a cutting exercise or something of that nature appears to be too hard, take a breath and let him do it.

The same goes for work. My son was "helped" so many times with so many things that, upon assessments or homework, he couldn't do these things on his own. Who is that really helping?

It is a disservice to any child to help to the point that it renders them unable. Physical disabilities notwithstanding, independence is what a majority of us are after.

Skills...

Some of us really don't care if our child can perform quadratic equations. However, we really do care if they can count money, read a calendar, and balance a checkbook. If my child doesn't "qualify" for the life skills room and is forced to keep learning about why the Underground Railroad isn't really a train track (three years and running!), I'm going to need a better reason than "he's verbal." 

I understand your hands are tied in a lot of cases because of state regulations. But listen to the parents' concerns. Don't automatically say, "he'll get it... eventually." Some things aren't that important to us. We want our children to succeed, yes, but maybe our definitions of success are different than yours.


In closing, I want to reiterate something I've said time and again- I couldn't do this without you. A good special education teacher, or any teacher, is worth his/her weight in gold. We mourn the good ones we must move away from, and will remember you for always.

Anatomy of a Meltdown

*Below is an anecdotal account of what it's like to melt down. I have used information from autistic friends. However, I've tried to tell this in a first person narrative in order to keep my friends' privacy intact. Please note, I'm not speaking of aggression. 

I'm really terrible with managing my emotions. For me, feelings fall into two categories- forced apathy and everything else. When I melt, I melt big.

Sometimes, I know it's coming.

There is a tsunami of emotions racing through me, maybe for an hour, day, week or even month. I'll congratulate myself inwardly for not blowing up, for not crying. I try to appear as "normal" as possible, but that add to the wave I know is coming.

I start to notice that sounds sound louder, textures sharper, emotions are "bigger." I feel like I'm in a pressure cooker and it scares me.

A meltdown can be described as peddling a bike up a big, slippery, and steep hill. It feels like a heavy load is attached to the back and front of whatever I'm fighting. I push and push to get to the top, battling my emotions and flight or fight reflex, just barely feel the crest, and then, I start to speed out of control and I fly down.

I cannot stop, it's all systems go. My brakes no longer work and any coping mechanism I've developed is tossed to the wayside. I might get hurt on the way to the end, or hurt others, but I know it's coming and, to a degree, that makes me feel better.

I can't stop until I crash at the bottom of the hill.

Pieces of emotions are everywhere I turn. It feels better to finally explode than it does to keep it bottled up.

Sometimes, I don't remember my melts accurately. I do and say things without any impulse control. I throw things, say things which aren't true, and cry a lot. I shake, I have millions of racing thoughts. I get dizzy, even.

My melts can last for hours. I try my damnedest to stay out of other people's way, lest they get hurt by my words or flying objects. Most of the time, I'm avoiding my triggers left and right, top to bottom. I'm trying to not fall apart.

When fight or flight have kicked in, basic instinct often takes over. Autistics lash out at the people around us because, often, they're safe. We know, though not in the moment, that our safety net will hold us.

You have to understand that, when you're on the receiving end, there isn't much a person can do to reign in the overwhelming feelings they're feeling. If we've reached the implosion stage, it scares the hell out of us. Nine out ten times, things are going to happen that would never occur under optimal or sub par conditions. We've tried and failed to keep things in check.



So, what can you do to help an autistic during these times?

Allow the storm to rage until it's over. Bottling up what's remaining isn't going to help anyone.

Ensure that they (and you) are safe, if possible. Don't chase them unless they're bolting into traffic or at a real risk of hurting themselves, chasing only heightens the "flight" in fight or flight. Speak calmly, no matter how hard that may be. Sometimes, being held helps. Applying deep pressure also helps.

Allow them to stim, to yell, pace, and cry. Don't tell someone, "Suck it up" because we can't. If you know the person's triggers, try to keep those at bay.

The best thing anyone can say, for me, is "I love you. It's going to be okay."




If you're autistic, how do you manage your meltdowns? What can others do to understand and help?

Autism, For Me

Autism for me is everything.

Autism intrinsically makes up every aspect of my daily life. I cannot separate autism from my being any more than I can change my eye color. I feel it down to my soul.

Autism means sensory assault in un/expected places. Beeping sounds, construction noise outside of my work, lights humming, and the pitch of people's voices.

I hold myself together until I cannot any longer.

Autism means that my fingers and hands dance along surfaces, teasing out the textures, finding solace in silk and shying away from slimy satin. It tells a tale through those hands. Autism tells people if I'm agitated, happy, or at peace.

Being autistic means that I feel as if everyone in the world who isn't me was handed a guidebook to life that isn't written in scribbles, hieroglyph, and all of their chapters are intact.

It means that if I watch someones face while talking, I miss the entire conversation. "Look me in the eyes if you're telling the truth," is a phrase which has terrified me from toddlerhood.

Autism means that I have decent intuition, but I rarely trust it. If my gut feeling is so different from how people are reacting to something, doesn't that mean I'm wrong? No, it does not.

Being autistic and not being diagnosed until later in life means that I've gone most of my life feeling like a foreigner in a non native land. Like I speak their language, but I don't comprehend 80% of it.

Being autistic is wonderful and awful, all at the same times. I have co-morbids along with my diagnosis that impair the hell out of me.

Autism means that I appear social until I cannot any longer. I get social hangovers from working retail. This means that I choose not to socialize on my days off, content to stay with my family and be quiet.

Being autistic means I'm shit with relationships. I'm loyal to a fault, but once someone violates my trust, I cut them off. I can compromise, but begrudgingly. I have a hard time relating to other people, and, in my experience, when the friendship ends, I'm usually stumped. Normally, it's something I said or did not say. As I've grown older, I've become okay with this. Either people like me for who I am, or they can back off.

Autism means that I can see the details before I see the big picture. It's all the little pieces before the comprehensive idea.

Being an undiagnosed autistic for most of my life meant that I became used to role playing, putting on masks of how I thought people wanted me to be. I still do that, because it's become such a coping mechanism and it works really well. People usually think I'm "social," at work, and incredibly type-A personality. They don't see or hear the inner dialogue I have running through my head at all times.

Autism means my brain never really shuts off. I'll wake up at 3am, intent on solving a problem that won't happen for years.

Autism is... me.

me 

Today

**Editor's note: I began writing this a week ago, when emotions were raw, as they still are. This may contain some language that offends and surprises long time readers of mine. While I apologize, I also ask for you to regard the use of this language in the context that it is used. I'm hurting. It's that simple. 

Today, I don't want to accept the hand my son has been dealt. I want to rage and scream, cry and cuss.  I want to demand answers to questions I haven't even formed, and probably never will.

Don't mistake me; this isn't about autism. I've made my peace with that and moved along. I've embraced it, even. I admit the hard and love the mediocre and the great. This other thing, it's different and it hurts.

Today, I'm admitting that I would change my son in a heartbeat.

I would change those scores and words that say "significant cognitive impairment." I would make life easier for him.

I would give him steadier footing on the playing field of life, because this is all so damned unfair. I would jerk away the regression that's stealing so many of his skills, much like I jerk up weeds in a garden.

I'm not sure that I'm supposed to admit here, or anywhere, that I would change my son, or that I'm mad, hurt, or wishing for a miracle of sorts. However, today, I don't care.

This feels different than when he was diagnosed with autism. We were better prepared, perhaps, better researched, definitely. I've known he had a "borderline" cognitive range since he was first evaluated. I expected that score to go up, somehow. But now? There on paper, it's states he's intellectually challenged. And it hurts.

God help the person who calls him "retarded."

Tomorrow, or the next day, I will research until my fingers cramp from the effort. I will find out exactly what it means for someone to be below the 1st percentile in something. I will be proactive. I will acknowledge that this new diagnosis makes sense.

But today, I'm sad. My boy is a great human being and none of that is reflected on a score sheet. I'm scared for him and worry for his future. He wants to work in a train store, which I think he'd excel at, but how would he run a cash register if he can't do simple math any more?

Today, I'm going to vow to live in the present as much as possible because the future is just too frightening.

Today, I'm going to cry, pick myself up, and then, move along.

Choosing A Path

**This raw post is written by my personal friend over at The Spectral Zone. He and his wife, along with their two gorgeous boys, have become friends of our family since our move to D.C. They are on a similar, yet different, path we were on so many years ago. 
Sometimes, as veteran parents who have been in the autism diagnosis game a while, it's easy to forget or diminish some of the raw emotions we once felt. I asked my friend to write on any topic he wished and this is what he chose. As a reminder, the views below do no necessarily reflect mine. 




It's really f*cking hard to admit that your kid is different.

Ask any parent what they want for their kid and, after "healthy," you will hear some variation of "I want her to fit in" or "I hope she has an easy path."

I'm still trying to accept that Flynn's path will probably not be easy.

Here in autismland, one of our biggest struggles. is how to get through to parents with kids who are struggling, but haven't yet been diagnosed with anything.  Parents who are concerned, but can't put their finger on why.  Parents who look at our kids and see, to their horror, their own kid reflected back.  

It's hard to watch your kid struggle.

I've watched my boy struggle with a lot of things, things I sometimes interpreted as failures.  Often, his struggles come despite my best efforts to support him. It never seems to get any easier to watch.  But before we knew his diagnosis, it was about a hundred times harder, because two key questions remained unanswered.  I didn't know why, and I didn't know how to help.  

I think that good parents often have a (somewhat flexible) vision in their mind of who their kids will be when they grow up.  And by that, I mean not what they grow up to "be" (fireman, doctor, lawyer, etc.), but rather which values they will demonstrate with their actions.  For example, you might attempt to instill through your parenting the expectation that your children demonstrate generosity, kindness, compassion, critical thinking, intelligence, independence, resilience in the face of failure, a sense of humor, etc.

Most parents, hopefully, will understand that success in instilling these values will be largely dependent on their child's personality, meaning they will fail to a greater or lesser degree.  And they also understand that a small child will only be able to demonstrate a few of these.

But even with that knowledge, it's hard to fail as badly as I have failed at instilling certain core values in your kid, without questioning your basic competence as a parent.  One particular example of my failures is the neurotypical version of generosity.  Sharing is hard for most kids at one point or another, but when Flynn was two and three. . . .  It just didn't happen. 

When he had a vision of who should touch his toys or how they should be played with, there was no changing it.  He just didn't share toys willingly, for the most part.  Even now, at nearly five, we're still working on strategies to make it more acceptable to him.

This struggle should have been one of our first indicators that we were on a different path from most parents.  There were others we should have spotted, perhaps, but Flynn was our first child.  You're never sure what to expect with a first child, so some of the other quirks were easy to write off (with the encouragement of his pediatrician) as variations on "typical" child development.  He pointed to a couple things and waved a few times, so he's got those milestones down, right?  Never mind that he did it and then stopped for a good year.  As in regressed.  "He's fine," she told us. 

So when he wouldn't share anything, ever, it seemed like he was just stubborn.  And kind of a jerk, if I'm being honest.  At two I made excuses for him, but by three I was getting frustrated.  That frustration made me highly conscious of other parents' judgements, made me more embarrassed, and more likely to be harsh with Flynn.  I can't even count the number of parties we had to leave during his third year because some other kid approached him and wanted to use "his" toy (which he had found 5 minutes before). It was mortifying.

All of this just made me feel like a complete failure as a parent, despite doing everything "right," according to the experts.

This is just one example, but the years before he was diagnosed were extremely challenging, as a result of our failure to understand his differences.  So what changed afterwards?  Well, we knew to expect social difficulties, for one.  Shortly after he was diagnosed, a friend said to me, "Wow, you've really gotten good at advocating for him." Things that would have been meltdowns were now chances for learning and teaching.

I finally understood the reasons for his behavior.  Being more of a hard-ass wasn't going to make him suddenly understand the point of sharing.  He needed patience and instruction.  In fact, if there's one thing that being an autism dad has definitively taught me, it's that the hard-ass impulse we all get sometimes is almost always wrong during the early childhood years.

I'm pretty sure that, eventually, Flynn will be a generous and kind adult.  But we're taking a different path to get there. A path with explicit social skills training, lots of rewards for behavior we like. It is a path which takes his reality into account.  No amount of yelling / forced sharing (which, in his mind is just theft) would have taught him anything but resentment. 

And you can extrapolate this to most other social skills, and a lot of other settings. For his first year at school, we heard all about his difficulties, but nothing answered the critical question: why?  Why was he aggressive with other kids, seemingly without provocation?  Why was he melting down during classroom transitions.  Why was he so eminently distractable?  Why, despite a year in daycare and a year in school, did he still respond to school drop-offs as though we would never return?

If your kid is having problems, you owe it to them to find out why.  Will you like the answer?  Maybe not. Their path may not be easy.  But a label changes nothing, and a diagnosis isn't a destiny.  But an accurate diagnosis tells you the cause for their behavior, and once you know that, you can start answering your real question:

What in the hell do I do with this kid?  How can I help him?

When you know, you can start preparing a path.  If it's not easy, well, at least it will be a path. 

Flynn, drinking a bottle of water while sitting on a rock. 

Doing Enough

Sometimes, I look at the search strings which lead people to this blog. Usually, they are funny, though strange, and I get a good chuckle out of them ("burn all of the Thomas trains" is a favorite). However, today I saw the string, "I don't do enough for my autistic son." I felt pain reading that, a familiar pain which is usually throbbing dully inside of my heart and increasing my anxiety tenfold.

I think, as parents, a majority of us feel like we could be doing more to help our children. When one of our kids has specialized needs, though, that worry is probably amplified. We often turn to social media as a measuring point, whether we intend that or not. That's probably not the healthiest thing to do.

 I felt that a checklist, in no particular order, would be handy to tell if you're doing enough.

1. Is your kid happy?
2. Is your kid safe?
3. Is your kid in a nourishing and encouraging environment?
4. Does your child express, through vocalizations or movements, that they feel comfortable in their environment?
5. Are your child's immediate needs (clothing, food, shelter, and education) being met?
6. Is he or she being allowed to experience childhood, in their own way?

If you answered "yes" to these, then I would say that you are doing enough. Could you be doing more? Of course, but don't allow the drive to do more be a detriment to your child or you.

Don't look to your neighbor to compare. Your child is an individual with individual needs, and shouldn't be evaluated by what someone else is doing. I'm incredibly guilty of doing this, more so in the past than present.

Lately, I've been trying hard to let go of doubts about my care for Morgan and Bailey, who has his own special needs. I know when I do wrong, but I'm trying to focus on what I'm doing right. Morgan dictates, through his emotional well being and progress with new challenges or old, how he's doing, as does his brother. Letting go of preconceived notions is making me a better parent, or at least a far more relaxed parent.

Morgan's happy, for the most part. He's a prepubescent boy, though, so his emotions change like the Virginia weather. His needs are being met. He's getting an incredibly appropriate education, he's nourished, and he appears to be thriving. That's good enough, for now. Should new challenges present themselves, we will meet them head on.

But, some might ask, what about socialization and getting "on level?"

First, "on level" is a subjective term that means something different to everyone. Is your child lagging in subjects? Does he or she appear to need another therapy stacked on top of the ones he or she is already receiving? Does he or she vocalize or emote that he or she feels the need to be surrounded by people? Or feel the need to interact with others after school?

If the answer is "no," than let things be. It's hard to make friends in an environment that's focused on the "proper" way to play. It's hard to thrive when your entire life is scheduled. If your child could benefit from something like what is mentioned above, then go for it. But watch for signs of burn out. Too much therapy is just as detrimental to the well being of a child as not enough.

Finally, don't beat yourself up and cast so many doubts upon your parenting that you cannot see how well you're raising your autistic child. Also, don't take too much advice from the internet (yes, I see what I did there). None of the people in the peanut galleries know your child like you do. Don't allow someone whom you've never met to cast doubts upon your parenting. They aren't the person raising your child.

Allow your child to see you happy and confident while you're parenting. That helps, a lot. And, honestly? We're all making this stuff up as we go.

Tips for the new autism parent

Hi, you're new here.

I see you at the schools, in waiting rooms, and the grocery store. You're overwhelmed, aren't you? I'm sure that your head is swirling from the act of parenting a child you might not understand, the advice you're being given, and the materials you've been pouring over. You probably feel isolated, misunderstood as a parent, and even angry that your child is autistic.

There are certain truths I've found to be useful while parenting my autistic child. These are my truths, but perhaps they'll help you.

Don't love your child despite autism,  love him for himself. Acceptance means loving someone wholly.

Don't get wrapped up in the labels, no matter how many your child has. This is so hard, especially when your child is young and the world of autism is so unpredictable (it's never really predictable). Here are the labels you want to concentrate on: capable, loved, and worth it. 

Feel every feeling, but don't let those feelings take over your life.  All of those things you're feeling? Perfectly valid, even the one nudging you to cry as much as you breathe. Autism can be scary because of the uncertainties, but know that this isn't the end of the world, not even close. Don't be bitter for the life you think you're missing, be in the moment of the life you have. 

If you don't have a sense of humor, get one. There are funny moments in every day, even the days when you want to curl into the fetal position and rock yourself more than your child is flapping or scripting. 

Celebrate all of your child's milestones, especially the ones you never knew existed. The first time he plays with another child unprompted. The first time he willingly puts on winter clothes. The first time he eats a not brand specific English muffin. These are all accomplishments. Feel glad for them. More is coming.

Find your tribe. Your tribe of people is out there, even if they're on Facebook or Twitter. These are the people you can tell most things to, laugh with about poop, and who will get it.

Buckle up- it's advocating time. Learn your child's rights and take no prisoners when it comes to defending them. Educate yourself as much as possible, take a breather, and then jump back in.

Keep calm and tell the people who refuse to understand your child, "bye.". This might mean you don't talk to family members or formerly close friends. You know what? If they cared about your child, they wouldn't be jack wagons.

There is a reason for every behavior your child displays and sometimes, that reason is because they're a child. "Behavior is communication," is something you're going to hear over and over. However, sometimes that behavior is simply due to your child's age.

Allow them to be kids. We get one childhood, that's it.

No one is the all knowing being of autism. There is no autism prophet. Consider that when receiving advice, even this advice.

Take care of yourself. Good mental health is key for raising any child, but when raising a child with extra needs, it's critical. Reach out to people, ask for help if you can, and take help if it's offered. Your child needs you to be healthy.


Above all else, remember that this moment isn't forever. Your perspective on autism and parenting will be different in another year. Love and enjoy your child.

What It's Like

*Editor's note: The following was a conversation I was lucky to be privy to between my two sons, over the course of about twenty minutes. I've omitted several things for privacy, and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons' permissions before publishing this. 

"Morgan," Bay asked, "what's it like to be you?"

The question was asked as the boys finished dinner and I sat away from them, reading a book. I marked my place and quietly listened.

"Well," Morgan said, "it's confusing. You know I'm an autism kid. Noises are big. Clothes have to be soft. Smells are hard." He went back to eating, apparently satisfied with his answers.

"But, Morgan, what's it like? Why is it confusing to be you?"

Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."

"There are all of these sounds and thinks (thoughts) and I can't just pick one. Can you?"

I sat, stunned. Morgan's never talked to his father or I like this. He's never really been able or rather, we've never been able, to get him to talk to us like this.

"Morgan," his brother started, "why do you script? Why do you use Thomas so much and love him so much?"

"I just do. The stories are in my head, 'cause I'm a narrator. I love Thomas, he's my friend. He's a very useful, cheeky engine."

"But you know, other kids don't like him as much, right? I mean, aren't you worried about bullies? Why do you talk like that (meaning nasally quality/monotone and scripting)?"

"I don't care if they don't like him, Mama says he's mine to love. Mama and Daddy say bullies just don't get hugged enough. I told you- I talk like this 'cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!" (note the script)

Me: "Morgan, is there anything that's really hard for you?"

"Yeah, people when they give me too many directions. That's hard." Having my own struggles with this, I agreed with him. "Going new places used to be bad, but sometimes it's fun now. But not too much. Rounding (numbers). Noise. Making people understand me."

"Haircuts used to be really hard, right?"

"Yep, but they're not so bad now. The hairs still feel like poking on my skin, and I'm scared my ears'll be chopped off." "Mama won't cut your ears off-" "But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!"

Me: "What would you make people understand?"

"I need to chuff (when he makes train noises and moves his arms in a circular motion, bent at the elbows). Ya know, trees stim? I'm a good boy and really useful. Don't talk about me in front of me. Kids shouldn't make fun, the grown ups, either. It's mean. People should understand people." I started tearing up.

Bay: "What's easy for you? You're good at lots."

"Making breakfast (he makes English muffins with cream cheese every morning for himself). Thomas stories. Tying my shoes. Making train sets. Snuggling. Smiling. Laughing. Swimming. Remembering the way."

Bay: "What's your school like?"

"It's big like a cave. It full of noise and echoes. I don't like the gym. It's confusing and fussy. Everyone is very busy all of the time and, when you're not busy, they give you more work. It's all work, work, work. Mrs. C's room is great. That's where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It's quiet in there, I can tell train stories. Have you heard of the (slips into a Scottish accent) twins, Donald and Douglas?"

Bay: "How come you don't have friends come over?"

"Because this is my home. I have school friends. They're at school."

"Don't you want to play with other kids at home? Other than me?"

"Sometimes. It's not important to me. I like you, Bay."

"Any other questions?"

"Do you like being autistic, Morgan?"

"Do you like being redheaded?"

"Um, I don't know how to not be redheaded."

"Well, Bailey, I'm an autism kid. I don't know how to not be one. I like being me, even the hard parts."


I like that Morgan covered the important stuff.

The boys, hanging out of a Tardis. 

Not Typical

When Morgan was first diagnosed with autism, my husband and I were in "fix it" mode. We meant that our end game was that Morgan would be indistinguishable from other children.

We wanted him to pass for typical. We wanted him to be happy at all costs, as long as those costs were within our scope of reasoning.

We were determined. 

I didn't care that the little voice in the back of my mind screamed this approach was wrong for us. Nope, it didn't matter. My son's voice and the atypical way he spoke? That needed to change. I completely neglected to remember that I should be thankful to be hearing words, finally. Those fidgeting and flapping fingers? Those needed to stop. All of the books said so. Typical kids don't do that.

Scores needed to climb higher. He needed to blend with the other children. He was miserable, so were we. The more I pushed for him to be less of an individual and part of a herd, the more behaviors we saw.

This didn't last long.

I (I say "I" because my husband traveled a lot in those days and I was the primary caretaker) wasted time and energy. I didn't see that this wonderful boy who had been in front of me the entire time was great, just the way he was. He needed support, not to be changed. The only changes that needed to be made were the parenting and teaching methods being applied to him. 

I don't remember when the epiphany occurred, but when it did, breathing became a bit easier. Morgan began to smile more. We, as a family, enjoyed life more. We understood each other better. There was no more suppression of autism, there was only expression of Morgan's truest self. Sometimes his truest self wasn't the happiest child or the nicest, but he's been himself and not some representation of what I wanted him to pass for. This begins with allowing him to stim and extends to indulging him in his love of Thomas the Tank Engine at the age of ten- we used to fight against those things. 

He is in what is considered middle school here and with it comes clubs, a dance or two, and some pressure to fit in. Morgan doesn't really feel that pressure, I think, but he misses having friends. A teacher, when I was chatting with her, offered up some suggestions that would, in a sense, eventually allow Morgan to "fit in and pass" as a typical child. I laughed. 

I told her that "being typical" isn't possible and therefore, isn't on our radar. I don't want my son to pass for something that he is not. Morgan is the most genuine person I know and I want him to stay that way for as long as possible. I don't believe that teaching him to mask his personality, his thinking, his mannerisms, or his truest self, is the best way to go about things. The teacher saw my points and agreed. 

I can't wash my son typical. I don't want to. I don't want to compare him to his typically developing peers and feel sad or long for something we've never had. I don't want to push him to be something that he's not. Instead, I would rather push him to be the best that he can be. 

The less I've pushed Morgan to "pass," the more I've allowed him to play with his autistic peers, typical peers who get him, and just "be," the happier he's been.

That's the end game for me, right now. Happy.

I understand why, out of ignorance, I wanted my son to assimilate and "become typical." I thought that, with enough hard work and diligence, he could figure out how to be typical and happy. My very literal brain was taught by society that my son would never be happy so long as he was autistic. That he could never be happy as an autistic. 

I'm so glad that I stopped listening to what I was told. Society is wrong. 

Being atypical is not easy.

Being autistic is not easy.

But you can be happy.

It just takes the right environment.

Going Without Air

I wake up in a dead panic, not knowing where I am. 

What's wrong with me?

I can't breathe. Oh God. I can't breathe. 

Panic is reaching into my sternum and through me. It has a steel fist grip on my spine and it's twisting, trying to keep me from moving or breathing. 

I can't breathe. 

Why is it so hot? 

I'm flapping at my neck, clawing at my hair, trying to get it off of me. The heat feels like it's crawling across me in stinging singes. I feel like I have ants stinging me and roaring wind in my ears. 

Panic has reached into my head and stirred it so badly that I cannot control my thoughts. They're galloping everywhere in a frenzy. 

I start to pace. My convoluted brain keeps screaming, "BREATHE!" I flap. I flap and pace. I angrily flap. I gasp for air. My chest feels as if it will explode. 

An hour goes by.

My husband hears my sounds and wakes up. He asks me what happened. I gasp, "Panic." He nods and rubs my back, which causes me to freeze more. I hate being touched sometimes. I cry some more. 

I try to stretch back out on the bed on and the tightness in my sternum jerks me back up. I yelp. I gasp for more air. 

The panic has set in so badly at this point, my brain is scrambling to make sense of anything. My hands are like foreign objects wildly combing my hair back and then flapping angrily as I pace and gasp and try to think. 

I feel crazy, so damn crazy. Other people don't wake up like this, surely. People sleep, correct? 

I'm going to throw up. 

I hate this. 

I'm shaking so badly and crying so hard. I brush my teeth and recoil at the smell of toothpaste. I hate it- too strong. I wash my face. 

I notice I'm finally breathing. 

I take a deep breath.

I have air. 

Today

Today I was grateful.

We were by ourselves and no explanations, no funny looks, no "why does he make that sound?" happened.

We were alone at the pool and it was wonderful.

My boys played like only they can play, with their own language and movement.

They raced. They dove. They sang. They smiled.

They were children.

They didn't cry. They didn't notice the stares I notice. They didn't feel the scrutiny I feel and shrug off.

I didn't fight the urge to scream from the noises, to shove children away from my children for calling names or touching them, or sit on the pool steps coiled like a spring, ready to take action. Or look on with bated breath, afraid that my autistic son, in his efforts to make a friend in his community, will innocently do what is consider the wrong thing by his typical and rather boorish peers. Even though he's just doing what his clique at school taught him was okay.

I was able to breathe.

I enjoyed myself.

I smiled.

I sang with my kids and swam.

I didn't fear.

I didn't steam.

I didn't tell a parent to control their child, too.

I know I shouldn't let other people matter, but sometimes they do. Sometimes, I need to be by myself with my kids. I don't want the world to interfere because sometimes, the world's inhabitants can be awful.

Today, we were lucky.

Today was a great day.

The State of You

Hey you. Yes, you.

The person who doesn't know where to put that line between yourself and the in-laws or parents. Or the extended family, maybe old friends. The you who is so damned busy discovering yourself that you are baffling and probably irritating the crap out of all of these people that they feel compelled to say something awful (they're jack wagons, fyi)

The you who is in my groups, writing me messages, posting to forums, wondering how in the hell you're going to make it without turning into an axe murderer of assholes everywhere.

You? You. Are. Fanfreakintastic.

You just need something...

You need a contract saying that the state of you isn't up for debate, sale, or negotiation. Just no. You're finding your comfy spot in the world, just as everyone else is supposed to be able to do, no matter the neurology, and people must back the hell off. 

There is no "good time" to confront you about your parenting skills if you are a parent doing the best you can. Are they parenting your child? No. Paying your bills? Living your life? Listening to your thoughts on loop? No. So they, the all-encompassing "they," don't matter.

Put that in the contract.

Stay away from the online jack wagons who want to tear into you, whether they are family or flat out foe. You don't need that, unless you want your blood pressure to skyrocket and you like throwing random crap at your wall (I might do this). Anytime you see that crap, hide it. Delete them. Unfollow. Problem solved.

This is part of the poison which seeps into your life and defecates on your thoughts, makes you question your life skills thus far, and stirs envy at times. It also calls into question your parenting, your diagnosis if you have one, and so much else. Squash it like the vermin it is.

Put it in your contract for you that you won't allow this crap to eat away at your happy moments. Call bullshit when you see it or read it, at least in your head, and move on. This just drains you.

The stares? The whispers? The people in public who would rather treat you and/or your child as a sideshow? Also don't matter. They take up precious space in your peripheral vision, in your thoughts as you recall a moment, and in ten minutes, two years, however long- they won't matter.

The contract shall state that the peripheral assholes don't matter. Period.

The naysayers to your diagnosis or your child's diagnosis also don't matter. They don't live your life. They don't live in your brain as you loop your thoughts around the same thing over and over like a horse on a carousel. Or search endlessly for the correct "weight" of a shirt. They aren't there as your child perservates on something that happened two years ago. Or as you do. So, they can also go away.

In you contract for you, boundaries must be clear. Boundaries that read: "Hi, I'm/we're/my child is autistic. Respect me/us/him/him." That's all. That's all you should have to say. Stick to that and you'd be surprised by how many people might back up.


Above all, make your contract read: "I am me. I am glad to be me. I am proud of myself or working towards that. I will not allow anyone to control my or my family's happiness. I am a good human being." And mean it.


What does the contract for the state of you say?

We Need to Stop

Anytime a tragedy like the recent murder of autistic Robert Robinson by his mother Angie happens, our entire community blows the hell up.  

Stop. Just stop. 

Arguments are quickly thrown out in articles on blogs and forums. God help you if you get it wrong. Or, even worse, if you get it right. Of course, no admits to the correct party from the wrong party if the correct party is correct. See how batcrap that is?

Just a quick observation list:

Words that average blog/article readers probably have to Google get thrown into conversation. This is how we know the conversation is going downhill. 

People pick apart arguments that barely exist. "Well, perhaps better services in place could have prevented this." "Not the time or the place for this discussion. Your comment shall be deleted by the admins."

If you say that you could see where a parent could have caregiver fatigue, you're called a murder apologist. "The parent should have called CPS, 9-1-1, left the child at a hospital or an agency for themselves. To say you understand any aspect of this parent is to defend this parent and I won't have murder apologists on this thread." What the hell? Anyone ever think that a parent in this kind of situation might be dealing with psychosis? Just wondering. 

If there is an acknowledgement of aggression and autism existing, a lot of people get up in arms. Why aren't we allowed to acknowledge this? And also, why don't people understand that the level of "autism severity" has not one thing to do with levels of aggression? I digress.

If you say that your kid is also aggressive, you're demonized in some form for putting that out there. Unless you're speaking to parents who might get it. It's a rarity, but it happens. 

You can't just say, "This is hard. My heart goes out to this person and his family." Nope, can't include the family. You just have to ignore the hell out of any siblings, grandparents, etc. 

You can't point out lack of services. Murder is never an acceptable option. So why are these two tied together? Why can't we have this discussion at the same time? 

You can't portray autism as anything but rainbows and unicorn farts, I guess. I don't remember seeing that in the diagnostic criteria in the DSM, but that seems to be the party line most people toe these days, including me a lot of the time. Guys, autism is fucking hard. It's hard to raise an autistic child with some aggression thrown in the mix. It's hard to be autistic some days. It's okay to admit this. 

There are massive refusals to see counterpoints/differences of opinions, even if they're only slight. It's okay to be angry- people should be angry this is happening. It's natural to feel hurt that something like this has happened again. But to not be able to see others' points of view? That's blindness. Willful blindness. 

We need to stop. None of this fighting and refusing to admit that things are hard is helping anyone in our community. All it's done is lay more blame in the wrong areas and making more people feel more alone and as if they should hide. And for what?

Making people feel isolated and even more alone isn't why I started blogging. If you ever feel as if you are in need of someone to talk to, in need of services and you know you are local to me (within the Louisiana/Mississippi/Alabama area), email me at deciphermorgan@gmail.com . If you aren't in my area, email me anyways. I know services don't always exist, but I'm willing to try to help you. You can find me on my Facebook page, too. 

If we cannot come together as a community and talk about the hard things- lack of services- for both autistics and caregivers, reasons for aggression (face it- a lot of caregivers are in the dark), and how to prevent another murder/suicide of an autistic and parent- then who do we discuss these things with? Our government?

We help, not more judgement from inside our own community. 

Conversing With An Autistic

Hi there! In the very short time I've been diagnosed autistic, I've come across some very confusing or downright asinine ways people address me and some other autistics while in conversations, both online and in person.

I thought I would be nice and put together a cheat sheet for people to refer to when they are in contact with an autistic. Now, mind you, this is based upon my experiences as both an autist and a mother of an autistic, and in no way does it reflect the attitude of the autistic community as a whole.

Step 1. Say, "Hello, my name is ----." Wait for a response.

Step 2. Talk to us like you would a person. Because we're people. Who knew?!

Step 3. Never say, "But you can't be autistic! You're so pretty/married/verbal/smart/independent." This is a tip off to the autistic that you may just be someone to kick. Not that we kick, but we might want to kick. By we, I mean "me."

Step 4.  No small talk. Get to the crux of what you're discussing or wanting to discuss. If it's the weather, it'd better be pouring.

Well...

Step 5.  Want to discuss autism? Great!
Now, this is a biggie. If you are in a discussion about autism, person first language, or functioning labels, put on your listening ears. You're actually talking about autism with an autistic. There is this thing called being polite, which involves digesting what the other person is saying. Don't assume to know better.

Don't tell me what to call myself. Don't assume to know my functioning level or that of my child. To do so is to make yourself look like a jerk.

My least favorite thing to hear is, "Don't let autism define you! It's only part of you!" Yes well, that might be so... but my skin color, natural hair color, and being a female are only part of me, too, and I can't get rid of any of those things. All of those things in some way define me.

Last thing on this: if you ask an autistic for what autism feels like, allow them to answer. Don't then negate that. It makes sense to ask an autistic what autism feels like. Would you ask a non parent for parenting advice?

Step 6. If we're in person, don't hug/squeeze/or otherwise touch us unless you know it's okay. Some of us really don't like to be touched.

Step 7. "Well, if you're autistic, what's your autism talent?" Just... no. Ask what we're interested in. Something like 2% of autistics are savants. I'm not one of them unless you count my amazing ability to swear.

Step 8. If you say, "Let's do this again" please mean it. I'm going to take you very literally.

If you've read through this and you're wondering what can you say to an autistic, or me, well... I think it's safe to say a good majority of us appreciate debate. I know I do. However, we hate having our neurology used against us. People do that quite a bit and it feels like a knife in my stomach- I can't speak for others.

You can talk to me about:
- our families
- autism
- politics
- flowers
- world news
- books
- music
- special education
- healthcare
- work
- and plenty of other things.

The "Look" of Autism

"He doesn't look autistic."
"She looks so pretty, are you sure?!"
"But he's cute."
"Did you get a second opinion? Because he looks so normal."


A picture is worth a thousand words, or so some say.

Beautiful children. 

Can you see how hard someone has worked to be able to say "hi" or say their name? Or write a name? Or conquer anxiety? Can you tell who has difficulty with language or who scripts all day long? Which ones are toe walkers, jumpers, bolters, wanderers? Which people have participated in ABA, OT, ST, hippotherapy, or water therapy?

By looking at pictures, are you able to pick out which kids are in inclusion classes, self contained, or a combination?

You can't tell. You cannot tell by just glancing at a picture of someone that they are on the autism spectrum, or where on the spectrum they are, can you?

There is no single "look" to autism.

Autism is different walks of life, different religions, different races, different ethnicities, and different genders.

Autism might be verbal, non verbal, tall, short, curly or straight haired. Someone who is autistic may or may not flap their hands, need chewies, fidgets, or a gait belt.  Autism might need 1:1 support in school or moderate support. You can't tell by looking.

By glancing at the kids, can you tell who have parents who are politically active, volunteer endlessly at the school, protest at the capitol in favor of better care for the disabled, advocate across our communities for students with IEPs, who's more comfortable behind a computer, or run organizations dedicated to the betterment of families with disabilities? None of us are wallflowers when it comes to fighting for our kids' rights, we all just do it differently. Autism, for the children featured here, looks like very dedicated parents. I am one of them.

With autism acceptance and awareness month upon us, please keep in mind that appearances are deceiving. Never judge a book by the cover. Never think that you know someone's mind or situation because you've been around them for five seconds. Please, don't think it's okay to use a phrase like, "But he/she looks ----." No matter how you phrase it, "normal," "low functioning," "high functioning," it usually feels odd and from my experience, you can't just neurology from looking at someone. Tell us our kid looks cute. Or that our child is sweet. That's usually okay.

Oh, and if our child doesn't "look" autistic... maybe it's that new haircut the kid's sporting. We only bribed the lady with an extra $20 or so.



*Thank you to the parents who allowed me to use their child's image in this post.