I go on posting sprees on my Facebook sometimes. And I assume it annoys many. I expect that I have been hidden from a lot of peoples news feeds due to my usually controversial posts. Today, it’s post after post about Autism. I don’t know how many of my friends even know what it is, or know enough about it to really understand it. My posts are public, mostly, and therefore I am hoping that whatever I find on Autism isn’t just seen by friends but their friends and they share and so on. Usually I keep the Autism chatter to support groups. Both of my kids are ASD. Or, rather, to put it more accurately, my son is ASD ADHD at nearly ten years old and my daughter is undergoing testing now at three years old. This month my boy is going for evals to see how he is doing, I am having to fill out a crap load of questions yet again. Basically it’s like going to get tested all over again since we are in another country. But I digress. I wanted to write something about Autism in general today, being that today is about Autism Acceptance.
Acceptance is a better word than Awareness in my book. Awareness makes me think of illnesses or simply knowing something exists. Autism needs more than people to know it’s there, it needs more than tolerance, it NEEDS to be accepted by everyone. Everyone. It needs to be understood. And that is a very difficult thing, considering that Autism is a spectrum, and every individual that resides on said spectrum is different from everyone else on the spectrum. Sure, there are similarities, but a treatment or therapy that works for one wont work for them all, and so it is very complicated.
Understanding within the Autism Community is also needed.
Even trying to put it to words for others to understand can be difficult. I mean, how do you really explain it to someone who has no idea what it is like? And therein lies the divide between those with Autism in their lives and those without. When you deal with it on a daily basis, this mentality of ‘you just don’t get it’ tends to rear its ugly head. There is even a divide among those in the autism community, parents with asd kiddos versus adults on the spectrum (who may or may not be parents), which is especially unsettling. I see the arguments arise online all the time. I notice that parents who are not on the spectrum tend to ignore the fact that their child with ASD will one day be an adult on the spectrum and they ignore any advice from asd adults (And yes, I know that not ALL parents are like that). It is that mentality that every parent seems to have (at one time or another) that no one else understands. And I do get that, I was there at some point. I felt very alone when my boy was diagnosed, because no one I knew was experiencing anything remotely similar. But we are NOT alone. So many other parents are dealing with this, in one form or another, so we as parents need to shed that view point that we are alone in this. We need to realize that there are so many others out there that DO understand, so many in similar situations. And we need to be supporting of one another, parents and asd adults, alike.
Children with Autism will grow up to be Adults with Autism
In some cases, signs or symptoms of Autism may lessen as a child gets older, but it isn’t always the case. In my case I am better with certain things, albeit mostly faking it for the comfort of others, but I still struggle with so much that I dealt with as a child. The only real difference in my life now is that I understand WHY I have those issues. And I suspect this is the case with many adults on the spectrum. During conversations online I get a lot of “well you seem very high functioning, you are lucky,” like my life is so easy. I can write, sure, but communication face to face is completely different. I revert to scripted speech. I repeat things back to people as if on automatic at times. I am not that eloquent in real life. I have to rehearse what Im going to say at any given time in my head first before I open my mouth, otherwise I just stare back at the person without saying a thing and then holy crap… awkward for them. When asked questions, I need a moment to think about my response, if I respond too quickly my words might jumble, or I might say something completely different than what I mean to because it was something I saved in my memory bank for another conversation. Misunderstandings happen a lot. I ask those parents of ASD kiddos to maybe think about that for a bit. What I just explained is a mere fraction of what we on the spectrum have to deal with on the daily. A lot of us, adults on the spectrum, like to point these things out to parents, and maybe try to get the parents to see it from the kid’s point of view. It is often misconstrued, and things usually are when we communicate something rather bluntly or worded differently than others are used to. Many of the misunderstandings with in that community are simply because of the way we communicate. In my experience, many asd adults are argumentative anyway, so therein lies a hurdle to jump as well. Often times we are thought to be trying to one up you, or just arguing for the sake of arguing, or over explaining things (holy cow I don’t realize I’m doing it most of the time) but it is not the case. We try to connect by pointing things out in our own lives, as a way of saying “yes I understand that because..” But it always turns out to be a retort something along the lines of “well I’m the parent so I know what it is, you don’t even know us,” etc.
Some things that piss me off (for lack of any better way to say it)
Ive always wondered why it is considered okay to tell an adult on the spectrum to grow up or that they are being immature. Why is it that adults are told that melt downs are not okay, that it is childish and that now that they are grown it is time to behave like an adult.. knowing that your child has those same meltdowns and same issues, would you tell that child to stop being so immature? Why is it okay for a child and yet when that child grows up, same exact issues as when they were younger, are suddenly expected to behave differently? Why is that “he/she’s just a child” an acceptable justification for behavior that affect so many of different ages? Why are people only considering the children in all this? WHY the hell are people creating this divide between kids and adults on the spectrum? Exactly WHEN do you expect your child to suddenly be “normal”? Are they supposed to wake up at age 18 and decide not to be autistic anymore? Apparently, we adults on the spectrum are supposed to be able to stop a melt down, mid sensory overload, or whatever other reason our melt down is about to occur. We are supposed to be able to stop it completely and then be POLITE and APOLOGIZE to those around us, rather than explain our Autism. Because explaining our Autism is us using our Autism as an excuse to behave like children. The way our brains work, are wired, wont automatically revert to typical at age 18. It just doesn’t happen. There is absolutely no way to cure Autism, all the therapies in the world wont turn a neuro diverse individual into a neurotypical. It just doesn’t work that way. Some things might get easier to handle, but in my view it is simply for the sake of others. Even though someone might be able to socialize better, I can probably guarantee you that those same issues are still underneath the surface, and that individual has learned how to divert certain behaviors… and then they go home and stim their butts off to avert a meltdown… or something like it. Or maybe fall asleep from exhaustion of seeming to be normal for everyone else when they’d rather just be themselves. This is why acceptance is so important. Autistic people should be able to be themselves without having to apologize for something they CANNOT control. Oh, we can hide a lot of things, those of us that are higher on the spectrum, but it doesn’t mean that anything is easier. And you can bet your bottom that I wont be thinking of how to behave to make others feel better when Im having sensory issues. If the lights are hurting my eyes, the sounds hurt my ears, I’m getting a migraine because of it, the last thing I want to do is try to make sure you feel comfortable, with your self righteous ideas that others have to behave a certain way for you. Because you are so goddamn important. If the sounds around me are all melted together into a loud buzzing noise, causing a fog to roll in over everything, and I cant hear anything you say to me, the last thing I am going to worry about is if my lack of response offends you. Because dammit Im in pain sometimes, I have to get away from the noise, the lights, the textures and smells that over whelm me. No, I wont grow up and deal just because you think I should. Let’s see you handle one day in my shoes, then see if you can grow up and just shut it all off and be NORMAL.
Okay that turned into a rant, as my posts so often do. But I get heated when I think about these things. Maybe this post is a bit more raw, real, and honest. Maybe this post will help others understand just a little bit better. Maybe. Or maybe I just sound like an asshole.