Autistic Universe: Help Hinder Hide
When it comes raising my non neurotypical child, I tend to look at the people that come into our lives and think to myself “are they going to help, hinder, or take a hike”
If you love. . . maybe just like . . .or are kind of an associate of . . . someone who loves someone with Autism, this is for you, with all the kindness and good intentions that can exists in a message that may be hard to take.
First, we accept that you come to us with your own life experience, exposure, and opinions. Based on your own experiences you probably have some pretty concrete ideas about how people should react in different situations. That is a big part of what makes you, you.
But now, tangentially or directly, you are involved with someone with Autism. For the purposes of this article, we are talking about someone with Asperger’s. Asperger’s no longer has a separate diagnosis and is instead incorporated into the broad (very) spectrum of Autism. It is characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests. Some of the smartest, most talented people throughout history are thought to have had Asperger's.
You have probably met people with Asperger’s and did not even know it. You have probably met people with Asperger’s that did not know that they have Asperger’s.
Frequently, autistic traits in otherwise “normal” seeming people can come off as simply bad behavior, weakness, or assholism. This is what I want to address in this article. I have heard, way too many times, people comment that my child should just “Suck it up!” instead of fixating on a problem or an issue. Sounds pretty simple. You have probably been told that more than once yourself. But in all likelihood, if you are reading this you are a neurotypical individual, and what you can and cannot suck up is directly related to your neurotypicalness.
If my child was blind, you would not tell him to suck it up and read the sign. If he had a spine injury, you would not tell him to stop lolling about in that wheelchair and go for a walk. So why, would you tell him to suck up a situation that his autism will not allow to be sucked.
Let’s say you buy a milkshake, a typical milkshake. By typical milkshake, I mean a milkshake like the millions that came before it and like the millions that will follow. By typical milkshake, I mean that no matter the size or color. . . it is clearly and without a doubt a milkshake.
You stick your straw in, you SUCK IT UP, everyone is happy. The restaurant is happy because they made an appropriate milkshake according to milkshake making rules. The customer is happy because the milkshake they wanted is the milkshake they got and it conforms with milkshake rules. The other customers are happy because your milkshake looks like their milkshake and you are sucking it up through a straw just like them.
If those typical milkshakes were lives, they would be neurotypical lives. Which means “exhibiting characteristics of typical neurological development not affected with a developmental disorder, especially autism spectrum disorder.”
But people with Autism are not neurotypical. They literally developed the phrase, neurotypical, to define people who do not have Autism. A 2017 CDC report shows:
- about 1 in 68 children has been identified with autism spectrum disorder (ASD)
- ASD is reported to occur in all racial, ethnic, and socioeconomic groups
- ASD is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189).
Given these stats, it should not continue to surprise you that sometimes, when you least expect it, your milkshake sucking bliss will be stopped in its tracks by a big hunk of strawberry, (or even peach, if you prefer). Same basic milkshake making process. It looks like a milkshake, smells like a milkshake, taste like a milkshake. But just when you are LOVIN that milkshake, a big ole hunk of strawberry gets sucked into that straw and will go no further.
That strawberry is “supposed” to go up the straw if you suck it properly, right?
If that strawberry stays stuck do you say to yourself, “Keep sucking, it will eventually conform and fit through the straw.” Do you do that? Do you suck harder and harder until you get that pop at the back of your jaw, or bust a blood vessel in your eye, or pass out from sheer exhaustion? Do you keep sucking until the strawberry, mangled from the pressure to conform its way into that straw, limps its way up that straw the way YOU wanted it to?
Maybe you try and work around it. Ignoring that one piece and focusing only on the rest of the shake as if a big ass hunk of strawberry is just going to disappear.
Or do you stop, re-evaluate and think of another way to get that milkshake life rolling safely along, preferably with the strawberry still in its originally sweet state?
This is what I, and my child, do on a daily basis. We find ways for him to navigate through the milkshake he was given without mangling the juicy sweetness that is a part of him. It is rarely easy, but we are getting it done. It takes time and effort and sometimes, the other people in the restaurant that we call a community, are not helpful. Sometimes, the people sitting at our own table think they know more about the strawberry in our cup than we do.
You know the old adage of lead, follow, or get out of the way? People make similar choices in most aspects of their lives. Including . . . milkshakes. But when it comes to sharing our world, I look instead to Hinder, Hike, Help.
Are you a hinderer?
When you see us or others like us trying to figure out how to drink the shake given to us, do you side eye us, and whisper behind our back about how we are doing it wrong? Making sure we “overhear” you, as if we were not painfully aware that damned strawberry was getting lodged again.
Do you offer your unsolicited advice about how to handle the chip of ice (yeah, no . . . it’s a strawberry but thanks for the unsolicited advice)
Are you going to tell my child, or me, kindly, or gently, or with exasperation, or even with disgust, or disdain, to “Just Suck It Up!” Because surely, if your strawberry swooshed up and landed in your mouth in a delicious burst of flavor it is because of your sucking power and not the size or shape of your strawberry, right?
Are you going to judge me for giving him the milkshake, not giving him the milkshake, letting him drink the milkshake in public, not making him drink the milkshake in public, picking strawberry, choosing the wrong straw . . .”
Are you going to silently, or not so silently judge me for not forcing him to drink his strawberry hunked milkshake the same way you do your smooth hunkless chocolate one?
If so, I am going to need you to leave my restaurant. Just let me know and we can shake hands, agree to disagree and spare each other the stress of spending any more time together than we have to. I won’t even be mad. You can suck down your milkshake guilt free and happy, but only if you go away.
Are you a hiker?
Are you going to stop calling, stop inviting, drift away because his milkshake and how he drinks it annoys you, or unsettles you,
Do you pity us and thank the milkshake makers of the world that you did not get our strawberry?
That is fine. I am a strong believer in feet doing the walking. If you can’t be there for him in a way that I think is appropriate, you will actually do less harm walking away than if you hover about. I will give you a hug and invite you to try again later.
Are you a helper?
Are you willing to listen to me when I tell you what my child needs?
Are you willing to respect, the key word here is respect? Are you willing to respect my wishes even if you do not always agree with them?
Anyone who wants to help me figure out that fucking strawberry is welcome to stay, but in my restaurant, you have to be positive.
We are not mangling any strawberries in this house.
In our house, we don’t care about race, who you love, how you love, what you love, who you vote for, or what god you worship (or don’t). If you are part of our lives, we will go to the end of the world to make you feel safe and wanted.
If we, as we are, hunky bits of strawberries included, do not feel safe and wanted with you, we will not be around you. I will not take my child into an unsafe emotional environment any more that I would let him play in an alligator infested river with no way to defend himself.
This is our truth, at least for today. The world is full of cruelty and indifference. But I am not going to welcome it into my house.