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. 

All Autism, All of the Time

If you're autistic, or the parent an autistic child, you'll likely understand exactly what I'm about to say. If you're an autism blogger, like me, you'll understand this even more.

My life is all autism, all the time. There is not a single second, minute, or hour of any day that is not dedicated to me thinking about it. I rabidly read about it. I will discuss it with anyone, willing or not. "Once you tell one person, and then they tell one person, and so on, and so on..."

People in my life, without autism or not 

touched by it, 

don't get it. 

Why would they? Most of my closest friends get it- probably because I've hijacked them onto the autism train. I've force fed them the information, they know Morgan and other people who are autistic, or they are willing to listen. I also have a great group of autism parents where we live, many of whom are strong advocates.

If someone calls me in the middle of the day, they are highly likely to hear my keyboard clacking. This is because I'm either writing a post about autism, private messaging a mom or dad about autism, or (rarely, but it's becoming more frequent) giving a quote about how autism has changed my life. I don't feel as if I can tell the caller that I can't talk because I want to talk to them, but I am also not willing to tell the person I'm pm'ing that I'll get back to them. I'm too afraid of what I won't come back to.

Those private messages, more often than not, are a lifeline (I'm told) to a parent in need. Sometimes it's something as simple as a question about an Individualized Education Plan (IEP). There have been multiple instances where I'm talking a parent back off of a ledge or cliff when they've had to consider hospitalizing their child and they feel as if they are now (the parent) suicidal.  No one needs to feel alone and in the dark. This is a service that I provide free of charge and am happy to do so. I also discuss SIBs (Self Injurious Behaviors), aggression, and several other things that these parents aren't comfortable having posted onto my blog's Facebook wall or in any other place due to identifiers.

My life is not understood by many, how could it be? I'm not getting paid for any of this, but I'm thrilled to do it. If I can help as many people as possible, then I'm happy to do it. I've been in these parents' places too many times to count without an outlet. Everyone needs help without judgement. If I cannot help them, I research the right places which could.

There is no escaping autism. 

Autism is your child and your child is your life. 

You never give up on either.

Autism is my child. My life. And while it isn't a bad life, it's an all encompassing life. It is what it is. If you can't handle me talking about it, don't write, call, or visit. Just don't interact with me at all. Don't tell me you want to understand and then chide me for explaining, because then you're going to get a big "Piss off" from me.

For those that say, "Shut it off. Take a break. Enjoy your family." Allow me this:

You think I don't already do that? I do shut off my computer, but I keep my phone on me in order to refer out that parent who might be on that edge of desperation.

Take a break? What the actual hell is that?

Enjoy my family? Every. Damn. Day.

For those that don't get why I'm so tired at times (all the time), here's a small breakdown: here lately, Morgan has had some trouble sleeping. His SIBs, outside of school, due to the environment at home (read: my health issues) are a bit high. We're having some aggression issues at times- at home. Morgan's had a few anxiety attacks at school. I'm also hyper focused on Bay and how he deals with all of this because he's five and I need to split my time equally, which never happens. I worry all the damned time. He's part of the autism family, too. And sometimes, he doesn't deal well with it all. He's high anxiety sometimes, which is hard. However, Bay's in an inclusion class at school and it's helped him learn soothing techniques for his brother. So, he too, is all autism, all of the time. But he doesn't seem to begrudge it any more than I or his father do.

I'm probably, when you ask how things are going, to tell you about those things, or rattle off some incoherent bullshit. Because that's what's going on in my life. And, frankly, I could give a shit about your Pampered Chef party, although it sounds cool. But I'm not tuning you out... I'm waiting for the other fucking shoe to drop.

When you call an autism mom, be prepared for her to be tired and to be half listening. Sometimes we're juggling 1,000 things at once and preparing for the school to call at any minute and for the special alarm ringtone for the school to go off. I know I am.

If you can't handle any of this, then don't bother trying to join in. Autism, especially parenting an autistic child, is a "jumping in head first" method of parenting and I'm one of those parents who not only jumped, but dove. 

I live it, eat it, breathe it, and write it. 

Autism is him. Autism is us. 

He Is Them

My husband and I were lunching at a little cafe in our downtown. As we were waiting in line, we noticed that the group in front of us had kids a little older than Morgan. We instantly recognized those kids as belonging to our son's tribe of people- they were autistic.

They were out with their aides after coming from an anti drug rally and were from the school Morgan is zoned for next. He won't be going there, but that's beside the point. We struck up a conversation, as I always do when autism is present- I can't help it. The paras were responsible, it turned out for the "severely impacted and verbal to moderately autistic and verbal or wheelchair bound" kids. They asked if Morgan was verbal, which always baffles me- being verbose gives no indication of a so called functioning label. But I digress...

The aides were helping the kids learn life skills by ordering for themselves, paying for their food, and tipping the servers. They were displaying good behaviors, I thought, but yes, they were displaying "typical autistic" behaviors. Hence, Thomas and I recognizing members of our son's tribe. You could say that our A-dar was on high alert. We were very happy to see these children (fifth and sixth graders) out in the community with their lovely aides being taken care of and, most importantly, being treated with love, respect, and dignity as they demonstrated the life skills they were clearly learning.

We placed our order and sat down in the front. I could hear the lively group in the back, their paras redirecting them with table manners; everyone seemed to be having a nice time.

Some women sitting behind me were gossiping about that awful letter making the rounds about the lady who intends on "educating obese children." I let it drop that I'm an autism blogger and all of my friends and I were super hot about it as well. If someone were to give my large kid that note? Oh honey. We all nodded.

Lunch finished up, Thomas went to refill our cups... and then "it" happened.

Our server came by to bus our table and for whatever reason, thought it was okay to say to me, "Shew! Just watching them kids made me tired! Can you imagine dealing with something like that e'ryday?!"

I looked at her levelly as I stood up and answered, "Yes. Yes I can. My son is one of those kids. I live with that wonderful life every day. He is them. And I can't ever  imagine saying something like that to someone like me or anyone else..."

She scooted off, shocked into silence. I turned to pick up my purse and saw the group of ladies at the table behind me and realized they'd heard every word. They were all grinning at me. I'm supposing I said the right thing, for once.

My point in telling you this is that those people are just that- people. They were out in the community, at a cafe whose business depends on everyone patronizing it, including autistic people and their paras or parents. How dare someone remark to a perfect stranger something like that? And in that tone, that language? As if that is not an okay way of being?

And guess what? Autism is everywhere. So, be prepared for it. Don't ever assume it's okay to crack a joke or make a comment to a random stranger about a group of autistic kids. You never know if the stranger you're laughing to is the proud mom of an autistic kid who will willingly write a letter to editor of your city's paper about your cafe.

This life isn't easy by any means. But God, it's worth it- he is worth it. My son, and every single person who shares his diagnosis or some other "different ability" deserves the respect to not be fodder for gossip or a joke.

So, thank you, server lady, for once again giving me the drive to write about social injustice. Here I was, getting complacent about acceptance and thinking that it wasn't a problem in our little community. I guess I was mistaken.

Don't assume

Dear neurotypical (or, "normal") person speaking of special needs,

There seems to be a lingering misconception outside the special needs bubble, meaning that world out there which has nothing to do with special needs, that says it's to to stick your foot in your mouth when asking or talking about special needs. I know I'm probably flogging a dying, but not dead, horse here, but some things still need to be said. Because what I would assume would be common sense isn't. I guess that saying about assuming is very true.

If the person you are talking to about special needs is a parent, tread very carefully. We are a pretty defensive bunch due to the slurs which have been thrown at our children since the delays were first noticed, or even birth if we're discussing a chromosomal issue. Saying things such as "but he looks normal" or "but he seems so happy!" don't really help your situation. Yes, my child is happy. Yes, he does look "normal." However, you come off as a dumb ass when those are your qualifiers as "but he doesn't look like he's ----." Asking intelligent questions does help.

Thinking that people like my child are in an unfortunate circumstance due to their neurology is ignorant, plain and simple. That is assuming quite a bit. You don't know their life just as I don't yours. Don't judge and please, don't let those words flow out of your mouth before you've had a chance to check them. If you have to ask me if your question is offensive, it probably is, so don't ask it. Find another way. Most of us don't mind educating people about our loved ones or referring you to those who are grown and living what is considered fulfilling lives.

Don't apologize to someone for their neurology or to a parent for their child's neurology or physical condition. Not sure when it's okay to apologize? Then don't. My friend Courtney wrote a great piece about this. The very short of it is this: "conditions" like autism (I'm speaking of this because this is what I know.) aren't a walk in the park for anyone involved, least of all my son. Apologizing to me for him being born this way is going to make me want to set you on fire. Oh, and hugging me? No. Just, no.

Let's just drop that little word, "normal," now shall we? Normal is a setting on the clothes dryer, not a brain. No matter how "normal" a person might think their life is, I'm willing to bet if you scratched the surface you'd find something "abnormal" (another word which is pretty wrong to use when describing someone).

If you think that it's okay to use actual slurs based on perceived notions of intellectual ability, you're wrong. Those words are nothing short of hate speech.

Don't ever assume because I'm the parent of an autistic child that I might be a lesser individual than you. To the same extreme, don't think that I'm some sort of superhero. I'm a mom, plain and simple.

If the person you're speaking to, like my son, has special needs, don't speak slowly. Assume that the person has the same level of competence you do, even if you know you aren't smart. To not assume competence, that is, intelligence, is to automatically degrade that individual and put them on the level of an inanimate object. I cannot scream this enough: only ever assume competence, nothing else.

Don't pity my son. Ever. Hell to the no.

Know that if you are pigeonholing people like my son as "less than," then they (and their parents, friends and assorted spectators) are pigeonholing you as someone with little more than basic thought skills. You are now a nonperson in all of our eyes. Honey, ignorance can be fixed, stupidity cannot. I don't do stupid.

If you get anything out of any of this, good. If you didn't, then I'm sorry. I guess I assumed too much competence on your part.

 Sincerely,

Jessi
Mom to Morgan, a beautiful autistic boy

To the people with special needs and parents of people with special needs reading this, what would you add?

Autism Aware and Accepting

* April is, according to several sources, Autism Awareness AND Acceptance Month. My feeds for the last two weeks or so have been chock full of memes, statuses, jokes, etc., all in the name of Light it Up Blue (LIUB) and Autism Awareness Month. This is, for all intents and purposes, "our" month. I wasn't going to write about this... but I changed my mind and decided to ramble. This is what Autism Awareness is for me, a neurotypical mom to an Autistic boy.




When I hear "Autism acceptance/awareness"... I see in my mind's eye my little boy playing with his trains, speaking kind of like Yoda, scripting, stimming, and sometimes wanting to be a part of this huge world that doesn't really understand him. When I hear or read those words, I think simply of Morgan and how far he's come to beat odds which someone who didn't really know him set forth. That person was me, not knowing Autism.

I wish someone had told me, when I first heard about Autism in relation to my son, to not be so afraid. That there are no set rules in Autism except for the ones my Autistic son might make. To never believe those godawful things, barriers, and statistics because my son would surprise me to the point that I would tuck his baby book into the book case and just stop caring about filling it out.

I wish someone had been there to tell me that at some point, I'd feel better about "that Autism stuff" as I remember someone (me) calling it. That I wouldn't cry so much one day and that my tears aren't for a life lost as some say, but for a boy in the here and now who is struggling in our neurotypical world.

Once I let go of what I've always held as a "perfect" childhood for Morgan, it refocused me and made me concentrate on what is important. This is not to say that I don't get depressed momentarily or longer about his struggles... it just means that I accept my son. I accept that he is Autistic. This does not mean that my dreams for my son disappeared, but it does mean that he is leading my hopes and dreams for him based on how he is and what he's into.

Acceptance of Autism and awareness of how actual Autistic adults address themselves is also what makes me mad at times when I see seemingly innocuous memes or statuses about Autism. Lists of how one should speak to Autistics... person first language...  I get that I'm not like all parents whose children are somewhere on the spectrum but I have a hard time accepting that I'm wrong for calling my son "Autistic" instead of "a person with Autism." I'm not wrong for that, I just cannot, in my mind, separate Morgan from Autism or Autism from Morgan. It is what it is. He's Autistic. It's taken me long enough to say this and I'll keep saying it.

I think that awareness campaigns are, in themselves, good things. Bringing attention to something like Autism needs to be done because there are people outside of the "Autism bubble" who really have zero idea what Autism really is all about. However, I don't kid myself and think that one day or month will bring about any monumental changes to our way of thinking, our schools, our hospitals and their treatment of Autistics, or our government. People need to also be aware, too, that this month can be painful for some- Autistics in particular. I get where they're coming from in a way. I, too, believe that Autism shouldn't be represented by a screaming six year old. Kids grow up to be adults. Autistic kids will grow up to be Autistic adults. Remember that.

I feel as if sometimes I must not speak up for how we raise awareness in our house because maybe, just maybe, I'm doing the wrong thing. People have told me this and really, I tend to not agree. However, I do check myself when talking about Morgan to strangers. Do I really need to state he is Autistic? No... I don't. But I do. It's been said that I'm labeling my child and that this is a danger because it might give him a complex of who he is and what he can or cannot accomplish. Well, I see it as this: my son is Autistic and other than being open about certain situations he might not be able to function in without a sensory overload, I don't set limitations on him. Not that I can see, anyways. Believe me, I'm my own worst critic.

When I think of Autism, I think of my son. He's what I have to go on other than the hundreds of books I've read or "experts" I've heard. He will be my face for Autism and that face will change year after year, just as his body does. But I will steer him and others toward the voices of the Autistic adults who have lived what he's lived, experienced things similar to what he's experienced. I'm not the expert any more than any other parent out there. This is another form of acceptance for me...

I think of my boy who will proudly say, "I'm Autistic." That's his acceptance because his parents don't allow him to believe that there is anything "wrong" with being wired differently.