My sister thinks I don’t have autism, and my brother thinks I’m just attention seeking.
Yup, that is what my big take-away was from seeing them last week.
My sister offered to buy plane tickets for me to come in for Jim’s funeral, and I accepted because if I said “no”, I immediately would have been a selfish bitch with no sense of family. So I accepted, and now she can hold that over my head for as long as possible (side note: I know exactly how much was spent, and may send her the money so its no longer on my conscience once I can afford to). So long story short, damned if you do, damned if you don’t.
It somehow came to talking about long-term plans and goals. I mentioned I still want to go to grad school, and that I’m still very interested in studying behavior and development, basically Autism Studies. I commented after saying this that I find it kind of funny being autistic and studying autism. Keep in mind my sister has stopped herself from saying that something made her “feel autistic” in front of me many times. She is well aware that I have autism. But for some reason, she doesn’t see it as “real” autism. Yeah, my sister doesn’t see me as valid as I am, so she intentionally forgets big pieces to make her view of me fit.
My brother couldn’t care less. I mentioned something about getting a puppy in a year or so, because I need Vaughn and Janyce to be able to train it. I am completely aware I am disabled, but he thinks its just for a big “LOOK AT ME!!!!” act, with no real impairment to be had. He literally asked me why. I don’t think I should have to explain why I need my 10 ½ year old and almost 12 year old dogs to train a puppy. I’ve had them since they were 10 and 6 weeks, respectively. It took them years to figure out how to help me the way they do. They are getting old. They kind of have a shelf life. He thinks I just do all of this to get people to pay attention to me. Yup, puppies are just for attention.
A big thing to keep in mind for those who are autistic: we want to pass. Being “normal” is seriously a goal. The fact many of us can pass for quirky most of the time, not disabled or mentally ill (seriously, that is another thing that needs to stop, just because many of us have co-morbid mental health issues doesn’t mean autism is a mental illness), is awesome. We are a productive part of society. Behavior is learned, so what someone does isn’t always an indicator of autism, though how they do it can be.
I have had people tell me I can’t be autistic because I’m great with kids. I have an almost obsessive interest in behavior and development, so kids are a great place to observe this. I’m patient because I learned not to let things I can’t change and that aren’t because of my actions get to me. Its all about learned behavior.
Austin had a woman comment that he wasn’t “really autistic” because he could write eloquently and get his point across. She even used the fact that he could talk (mother of a non-verbal autistic son) as why he wasn’t autistic. I can’t show it to you directly because to save his sanity, he deletes those types of comments. Its interesting because he’s the first person I remember knowing where “autistic” was part of my personal definition for him, more specifically “Asperger’s”. I used his characteristics to base why I was “weird” but not “autistic” for many years (remember, my diagnosis was not talked about and was basically secret to me until I was 30. I do have memories of that time and those events, but they didn’t make sense out of context). Autism isn’t just one thing, so no two people with autism, even if they are identical twins, have the same autism.
Autism is all about behaviors and why certain behaviors form, and even to a degree, how those behaviors are performed. Those of us that pass have learned which behaviors are OK for use in society without someone looking at us as if we have multiple heads and green polka dots covering our bodies. Sometimes the veil slips and we do something that is obviously not an acceptable behavior. Those moments can be hard to recover from.
The definition of autism is that it is a pervasive disorder of development, mostly impacting social behaviors (speech, body language and understanding of situations, which is just a limited scope) and sensory processing (which can be as broad as it sounds). I used to tell myself I couldn’t be autistic because I can talk to anyone, refusing to acknowledge that I can’t really read between the lines in a lot of situations (sorry to all my guy friends who ever really wanted to be more than just friends, I really didn’t get it, I am a fucking space cadet!); basically, I suck at social speech. I couldn’t be autistic because I didn’t see myself stim (common term for self-stimulate) or hurt myself, but I was doing those behaviors all the time.
I will always have fixed patterns for how things are done. Left sock, left shoe, right sock, right shoe. Medications before supplements, unless I take them all at once (I can easily swallow over 20 pills at once, which is a blessing and a curse). I will always have a tendency to become obsessive. I will always feel weird in social situations (seriously, if you have a chance to see me at a bar, it can be uncomfortable).
Just remember, if you see me wearing mismatched socks, ask me if I’m OK, but don’t bring up the socks. Hopefully, I’m just behind on laundry.