All the Pieces Fit
What is Autism? Did you know that it's a spectrum and everyone that's placed on it is completely different from one another. Two autistic individuals though they may have the same characteristics can be on varying places of the spectrum.
So when you first read the word autism what came to mind first? Is it that video you saw of the "little" boy having a tantrum in the store? Yelling at his mom over something you believe is ridiculous and the mom needs to "parent" her child better. The non verbal child who speaks through a tablet, or the child who won't stop talking about that one subject repeatedly to no avail. Maybe its even that super smart kid you grew up with who's probably a genius now.
Do you realize these are actually stereotypes of what you think autism really is? It goes so much deeper then you imagine! That boy yelling at his mom in the store isn't actually having a tantrum but a meltdown. There is a defined difference between the two.
Sadly I was one of many who was uneducated and only knew of the stereotypical version of what autism was and looked like. I didn't even know what to look for in my own children. No one told me the warning signs. Even when they presented themselves, still no one saw the red flags or questioned their behavior. My autism went undetected for over 30 years. Yes, hello I'm autistic and have ADHD.
It took me questioning why Richard and I after nearly 11 years of being together were always having such a hard time communicating. Its like a wall is between us and one of us is speaking another language. There had to be a reason, right?
During my very early childhood to my teens I spent a lot of time in speech therapy. I remember having some sort of speech related something until the end of 8th grade. A good chunck of my life! I also did and still do this thing where I won't talk to people and go mute, which I now realize is called selective mutism. Which is a rare form of extreme social anxiety that can and cannot go hand and hand with autism.
I remember sitting and just freezing and not being able to speak. Its not that I couldn't or I didn't know how, I just froze and in my head I would be like "welp too much time has past now you really can't say anything" and then I'd just continue to sit there even longer and say nothing. I was really good at not saying anything. Its like my brain and mouth loose signal and nothing comes out, like the connection is somehow lost. BUT I UNDERSTAND WHAT IS SAID COMPLETELY! I even answer in my head, its just no words come out. My brain just will not allow me to talk.
Writing was and to this day still is my go to form of communication. It's so much easier to get my thoughts out in writing, read it, and rewrite it if needed. Verbally it's not that easy. You say it, it comes out wrong, you try to rephrase it and it comes out worse then before and you can't really go back and say it again. It doesn't really work well that way. I remember going to therapy... really important therapy sessions at one point and there we were passing a laptop back and forth.
As a child, we're talking older then 5, I would have these massive meltdowns where nothing could be said to me during them. I just had to scream and kick and do my own thing for as long as I needed to. Tantrums you can give a kid an ultimatum and they'll stop to get whatever that is. A meltdown you can't do that. You can't get through to the child or adult during that time, there's no communicating or reasoning with them. Which is why its very important to learn the signs and know how to appropriately de-escalate a situation if needed.
This is why if a person is autistic or not and is having a meltdown and the world is pointing the finger calling them crazy, this creates more problems. We need people with better understanding to aid in situations to help. Standing there laughing, recording, whatever it is you're doing, you're actually potentially escalating the issue and could be making it worse!!
Making friends is not easy. When verbal communication is not easy. A lot of people don't actually end up sticking around very long in my life. In my adult life I never understood why, but over the years I've gotten used to my life with few close friends. I over share a lot or tend to not communicate for very long periods. There's no in-between for me.
As a kid I remember being a bit obsessive with my friends and clingy and probably really damn annoying. I don't think I understood boundaries. Well, no, I didn't know boundaries!! I apologize for my childhood friends who read this.
Being my friend was probably really exhausting. I appreciate you for sticking by my side. I know I could be a lot to handle and could say and do a lot of shitty things too. I don't have a filter, and I'm straight to the point, which to some is rude. I just really wanted to fit in... I desperately wanted to fit in... and was always the outsider because I was socially weird. I get that now. I really appreciate my childhood friends who read this because you have NO idea how truly special you are to me and how much you meant to me then and even now!
Back then we didn't have caller ID. You couldn't just ignore calls like you can these days when a name pops up and you don't feel like talking to that person. Phone rang the kids parent picked up, parent yells to kid, and then you talked, or parents arranged playdates, etc. Friends weren't so much the choice of the kid.
These days kids have tablets, kids can ignore calls, though kids can't get out of arranged playdates as easily, but kids have more ways to communicate then I did growing up. I'm pretty sure I would have had a harder time connecting with my peers. I see it now with my own children.
I'm still learning about myself when it comes to emotions. Yep even after over 30 years I'm still learning and trying to make sense about things I do. For a while I thought I was numb, or that I did this as a defense mechanism. But no, that may not be the case. After joining a group for autistic women I started being able to heal parts of my past but also learning about a lot of what I do and being able to explain a little better about why I do them. I'm also not a lone in going through any of my own journey for once!!
I either feel emotions SO strongly or not at all. But I also don't have a good sense of what emotion is what and how to appropriate my emotions. I think over 30+ years I've learned some but still not enough. As I tend to go from 0-100 without stopping. There's no warning to this either!
Then there's times when I really don't feel much of anything. Which really is majority of the time. I don't really associate every moment of everyday with an emotion so I'm kinda just numb at all times. I just don't have a sense of my emotions or how I feel at every given moment. Its either all or nothing and its usually nothing and randomly and impulsively I'll feel which is probably why its SO intense because its like BAM in your face all at once at a level 11!!! I don't get mad, its all out rage.
Richard noticed early on when giving me presents that I don't show joy or excitement when receiving them. He was worried that maybe I didn't like what he had gotten, which wasn't the case at all! I just lack the ability of physically showing emotions. Which is another thing I don't do a great job at. I don't smile or jump or flap, stim, nothing. My expression and body language stays the same. I really love the gift and what he got me though. If I do show emotions during situations its probably the wrong one. I don't appropriate emotions accordingly.
I can go on and on too, but for the sake of not writing a book..
With my own children I missed the signs. I never knew what to look for. Knowing myself and what I thought was normal because I was never told any differently I didn't think to bring up specific things. It didn't dawn on me that some things were off. I never thought anything I did was abnormal so why would we think our own kids would be different.
Why aren't pediatricians asking more questions? Not just about red flags for autism but ADHD as well. I'll be writing a separate blog on ADHD soon as this pertains to both Richard and myself.
More education and awareness needs to be done so parents can know what to look for in their children. We surely didn't know what the signs were. They say early diagnosis is super important in getting the proper help for children on the spectrum. How can we get them help if we have this messed up idea of what autism is as a whole and no one is asking the proper questions? Especially for those who are undiagnosed themselves so looking at their child's behavior is just as normal to them so it doesn't come off as any different or weird. Don't give me this high functioning/low functioning BS either. I hate that term to begin with so lets not even go there as a criteria.
Had I been diagnosed, I would have had better help as a kid. I would have had help geared toward my autism and ADHD and not just because I had some sort of learning and communication difference and disability. I would have had the help I desperately needed! I NEEDED somebody any damn body to understand me!! I would have had a different IEP. I believe I would have had better support had someone seen my autism and ADHD.
So why is there a wall in communication between Richard and I? Obviously I communicate fine, right? Yes and no. So its a bit more complicated but simply put I communicate differently then he does.
There has been an actual study done that proves that neurotypical individuals communicate and understand each other perfectly fine. This is the same for autistic individuals. But for an autistic individual and neurotypical individual the information somehow gets lost in translation.
For example for me personally, I need details when things are explained and I need things straight to the point. Here's an example of a conversation Richard and I had in which he thought he gave a lot of detail.
I asked if I should wear a heavy jacket before going out and he responded with "eh I stuck my arm out and it feels ok, not too bad. There's a bit of a breeze"....
To a neurotypical person I'm sure he did give a good amount of detail but for me personally, he didn't. He didn't answer my question which lead me to ask about 5 questions before getting the answer I needed, which was a yes it was cold enough for a heavier jacket. You can't base things off the temperature all the time in VA. What I needed was a "yes its cold" or a "yes its cold wear a heavy jacket". That's where the communication gap is between us. To me he gives very vague answers and not what I NEED and am looking for when I ask or need information. This is only one example and not the best one so I do apologize. It is the only one that comes to mind since it's so recent.
Learning what I know now, I understand where this wall is and why its happening. So therefore I now know what we can work on so we can have a stronger relationship when it comes to communication. A lot of our conversations are done through messages because its easier for me, but its easier to go back and reread where things were lost in translation too.
I am understanding too a lot of it is how I need things broken down and how he doesn't give direct answers with the info I seek which then turns into 100 questions and its this drawn out process each time I need something. I need straight to the point answers. I'm not good with maybe or possibly or reading between the lines. I need very direct answers with strict details.
I'm learning and accepting and trying to be flexible with adapting to how communicating works between us when we don't communicate the same way. Its challenging though!
I'm thankful for Richard and that he is also learning and even working on how his tone of voice can effect not just me but the girls as well. Also how phrases can sound and how changing one word can make a HUGE difference! We've learned so much together too over the last several months.
I don't do well with reading facial expressions or body language. Tone of voice can be tricky if I don't know you well. Even so a change in tone can come off as being disapproving, etc. I remember as a kid, the tone in my parents voices changing and thinking they were instantly mad at me and thinking I was in trouble. They could have been praising me, but its their tone I heard. This is something I'm working on with my own kids, because I know my tone hurts them and shuts them down even if I'm telling them something good.
There's so much to my life I just thought others never understood about me or maybe I was just super weird. Maybe I just wasn't made for this world. Truly, I thought the world would never understand me, and I would never understand the world. I was always standing on the outside looking in. I was intelligent in my own mind, but no one could see it, hear it. No one could understand me, those I talked to seemed to have a harder time following what I was saying. Maybe something really was wrong with me.
I found my voice though! I found a way to reach others! I learned I'm not a lone, and there are others just like me! My kids, they won't ever know they are a lone and they have a voice and a place to be themselves!!
The world forgets that there are those who think, communicate, and do things differently then others. Children are no different! I learn differently. I pickup information and details differently, but I retain information, I still learn, and I communicate just fine. I just do so differently.
Despite all this, I, and those like me, all those on the spectrum deserve inclusion!! All the pieces fit!
