I've been wondering lately what 4A will think of this blog when she's old enough to read it.
I recently rated Julie Clark's wonderful book, Asperger's in Pink. I really related to that book in so many ways. Our diagnostic and treatment paths for our girls are different, but our girls are very similar in many ways, in the fundamental Aspie ways of neurological wiring. Oh sure, the particulars of the behaviors or special interests or symptoms differ at times, but at the core, we both have Aspie girls who are wired different neurologically. How I wish I had this book as I began our journey into autism! But, reading it many years after the fact, as I did, still gave me a lot of healing and perspective and community.
In any event, a woman with Asperger's herself rated the book, and her comment really, really struck a nerve for me. This woman was greatly disappointed with the book because it described the Aspie girl as, basically, a pain in her parents' ass. I froze when I read this.
While I have known from early on that Aspies and their parents often don't wish for a cure to the different neurological wiring and instead crave increased conceptions of neurological diversity (and we fit into this camp), I have always wondered how 4A will feel about my understanding of and advocacy for her autism.
I am very, very clear that we consider her to be "normal," but since I am neurotypical and I write to an audience of parents, I wonder if she'll feel slighted or "talked about." I think this is how the Aspie woman who commented on Julie's book felt. Julie writes, as a NT parent, about having an Aspie girl. I could relate to Julie as a parent, and I felt she was loving and understanding of her daughter's wiring. But, I'm not an Aspie, so I don't know what it feels like to be an Aspie who has an NT parent.
Because I am neurotypical, I know how neurotypicals' minds work. When NTs are afraid, humor and compassion and kindness mitigate fear. I was once very afraid of autism, my child, and all that lay ahead for our family. My goal with this blog is to un-afraid parents so that they are able to help their kids. As such, I use humor and compassion and kindness to mitigate their fear.
Because NTs find it so hard to relate to Aspies, a comparison or a description of an Aspie in NT terms (read different, not normal, opposite, odd, or weird) bridges the gap from fear to understanding. If I describe it in terms that NTs understand (autism wiring as different from their own) and then explain the ASD wiring with a bit of humor, the NT can see the difference between the two and, hopefully, get the point.
What I fear is that 4A will take this to mean that I feel that she is odd or weird or different. That is categorically untrue.
It is true, instead, that I perceive many others to find her wiring to be odd or weird or different or not-intuitive. My goal is to have more folks see her wiring as normal or natural or understandable or everyday.
Now, please hear what I did not say. I did not say that I need people to understand her. I don't (although it'd be nice if her teachers and her friends and her family did).
It does hurt me, of course, when the people in her life don't understand her or her wiring because I am this lovely creature's mother. Not in a personal or affronted way but in a "why couldn't it be easier or different" way. The misunderstanding that the larger NT world outside of her life has of her and her wiring is truly none of my concern. I'm not apathetic; please don't misunderstand. But, this larger misunderstanding doesn't make me worry or fret or feel scared. It makes me sad. It makes me want to advocate and educate, but I am very realistically clear that many people won't change their minds. That's okay, of course. But, I will die trying. Not for her, mind you. For me. I need and want to do this as her mother. Just as I advocate for all the things that all of my children love, I advocate for her and about her because I love her. The stakes for her are just higher.
All the advocating and educating that I may be able to do (or not) really won't amount to a hill of beans for her. (a) Because it may not reach enough folks. But, more importantly and more likely and more accurately because (b) she may not want to be advocated for because she perceives her wiring as normal or everyday or (likely) better.
I have heard people (mostly those who don't know better but even some who should know better, and the latter category kills me) describe my beloved 4A as rude, inflexible, spoiled, and possessing personality problems.
Asperger's is not a personality problem. Aspies, including 4A, do have neurological wiring that makes their minds work in a way that is different than the NT one. It's not a "personality." It's a neurological difference or distinction in that it has a biological basis. It's not a problem. People don't understand it and that causes problems, but the different wiring, in and of itself, is not a problem.
4A is not (always) rude. Because of her neurological wiring, she perceives her thoughts as truth and assumes that everyone else shares her thoughts. Because of her neurological wiring, she doesn't take other's perspectives or even (sometimes) comprehend that they exist. That is not rudeness. That is different wiring.
4A is not inflexible. Because of her neurological wiring, she doesn't perceive or comprehend that others around her may want different things, have different thoughts or perspectives. To say she's inflexible assumes that she knows that she's trying to "get her way." It actually has nothing to do with that. She, because of her wiring, doesn't know (sometimes) that other ways exist. And, because of her wiring, her world is literal with nothing hidden or unexplained or grey. If you want something from her, you need to learn that language in order to get it from her. Please don't expect her to give it to you or do it for you if you aren't speaking her neurological language.
4A is not spoiled. This is explained identically to "inflexibility," except that I would add that "spoiled-ness" might exist if we allowed her wiring to excuse her behavior. For us, it explains her behavior, but it does not buy her a free pass. Instead, she must learn the social skills that the neurotypical world she lives in requires, like flexibility, perspective taking, and politeness. Learning these skills will be harder for her because of her wiring. They don't come organically or naturally to her. That's okay, of course, but she needs to learn them anyway. It becomes our job, then, not to let it slide but to help her learn skills that are not intuitive to her wiring.
Now, when she's a grown-up, she may (appropriately so) reject the use of these tools that we're teaching her. But, for now, her job or role or place in this world as a child is to go to school (or be educated). School/education is all about (1) learning and (2) following rules. Her secondary job in this world as a child is to have friends and fun. Friends and fun are all about (3) perspective taking and (4) flexibility and (5) commonality and (6) politeness and (7) empathy. All of these skills that I have just mentioned, (1)-(7) inclusive, elude her (at times or to varying degrees) because of her neurological wiring. Knowing that she may categorically reject these skills later in life in preferring to live her life without them to be true to her wiring, am I now, as her mother while she is a young child, to not help her master or mimic these skills? For me, the answer is a resounding no. Actually, more of a really loud, confident "HELL NO!!!"
I am not asking her to change. I don't think she needs to. I think her wiring is divinely perfect. I do think, as her mother, that she does need to learn to master or mimic these skills, even if they are not organic in her and even if she doesn't want to and even if it is hard for her (and me), because she has to live in this world now. Girl Aspies are profoundly prone to depression in their adolescent years. Knowing that is a very real possibility down the pike, I would prefer to spend our time now giving her skills and tools that may help her keep that possibility at bay or at least lessen its likelihood. I can't avoid it for her. In fact, she can't even avoid it herself. Depression, like autism, is biological. That being said, all of the preparation in the world can't avoid biology. But, I intend to give her a fighting chance. Not at being popular or having friends (absolutely not the former, at least), but at knowing who she is and how to relate to people so that she doesn't feel lonely if she, in fact, doesn't feel like being alone.
When she looks back on all of this work that we do for and with her, I don't know if she'll be able to see that. It doesn't matter, of course. As all parents do, I make choices that I believe to be in the best interest of who she is and who she can become and what she needs. But, I do wonder if she'll feel like I thought that she needed to change because who she was wasn't acceptable.
I hope I can impress upon her that who she is is absolutely acceptable to her, to us, to God. I pray that who she is will also be acceptable to those she chooses to share her life with, in friendship or work or interests or love. That's the very, very best I can do.