My Daughter & Autism

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I’ve been MIA for about two years now. As happens, life decides to get in the way and some things fall to the wayside. This blog being one of them. I hope to change that now, for many reasons. But, today’s blog is all about my daughter and autism.

Almost two years ago my daughter was diagnosed with autism, severe anxiety disorder, OCD excoriation (skin picking in layman’s terms) and depression, as well as Borderline Intellectual Functioning. There were tests. Oh, so many tests and papers to fill out, questions to answer, and interviews. It was a lot. It’s still a lot.

I always knew she might possibly be autistic, but getting an actual firm diagnosis from a doctor with lots of fancy degrees and multiple letters after her name made it official. It was both a sigh of relief moment and a moment of life-altering hard-hitting reality. This is her. This is always going to be her.

My daughter is considered a Level 1 autistic. Yes, even in autism, people feel a need to put other people in boxes, and make them fit, although they often don’t. I strongly feel this is inadequate and does her and every other autistic person a disservice. Because, here’s how it works. The higher level you are, the more services you have access to.

What it really means on paper is that because she has extremely good verbal skills, lots of men with fancy degrees and fancier suits feel she needs less help than someone who is non-verbal. What it means to her, myself, and her therapist, is that she is lost in some gray area where we know she does need more help, but because she speaks so well, on paper that prevents her from finding that help more easily.

Let’s get this straight, a verbal autistic person needs every bit as much help, as a non-verbal person. They simply need it in a different way. And, let me tell you, finding help once a person is over 18 is hard, very hard. My daughter is still in high-school at twenty-years-old. She cannot drive. She would not go in a store alone to buy even one item until this last year. When she did, she would shove all of her money at the cashier, no matter how much it cost. She’s getting better at it. There are still days she will have a meltdown and cry because she doesn’t want to. I won’t let her stop.

She has panic attacks. She is emotionally on the level of a fourteen-year-old. She doesn’t want to leave her room. She has no real life friends. She could spend every day in the same clothes and never care about that. Ever. She has to be reminded to brush her teeth, take a shower, put on deodorant, even now.

My daughter self-harms. Many autistics do. She used to hit me. She doesn’t take change well. She takes everything too literally. She didn’t know how to make or take a joke until she was fifteen. She is afraid of most men. She is still learning her multiplication. She is moody and has bouts of depression. She doesn’t know if she understands love or even if she feels it.

She needs help recalling her phone number, her address, and step-by-step printed guides on how to wash dishes, clean her room. If I don’t push her, those things never happen. And, it never changes.

I could list a thousand things that show why she needs help, a thousand things that highlight her autism. Without help, she will never have her own life, possibly never go to college, never hold a good job, never marry, have children, travel, see the world or conquer it. I am her driver, her cook, her maid, her advocate. Neither of us have the life we envisioned we’d have when she turned twenty-years-old.

But, let me tell you other things about her. My daughter is an artist. She’s been drawing since she could hold a crayon and never stopped. She is a self-taught graphic artist, and is teaching herself animation. A girl who can barely do her times tables is teaching herself how to animate art. Think about that.

She is seriously funny. Her sense of humor may have taken a while to kick in, but once it did, it became this quick-witted, dry sort of humor that keeps me in stitches. Then, there’s another sort of humor, the silliness she refers to as, “the humor of a thirteen-year-old boy.”

She is the sweetest kid on Earth. Loving. Loyal. If she loves you, she loves you and that’s it. You could hurt her a thousand ways and she’d forgive you. For a mother, that’s a scary thing to understand in your child, that she’s vulnerable to being hurt, used. She doesn’t have a bad bone in her body.

And, her fancy tests may say something else by number, but this girl is so intelligent, so smart. She can tell you any and every thing you ever wanted to know about dinosaurs, insects, sea life, and more. If it’s an interest to her, she will learn absolutely everything about it to the Nth degree.

She may not be comfortable at expressing love the way we know it, but she’ll come to me and spend an hour telling me facts. That’s her love. That’s her telling me she wants to be with me. If I hear her singing the ABC song in her room, that means she’s happy, content, and it fills me with happiness, too.

Sometimes, I have gotten down and mourned the life I think I’ve lost, the one where I’m a relatively young woman whose kid is grown and out on their own and it’s all me time. And, then, I hear her singing. And, everything is okay, it’s all okay. And, for her, I would do anything. I would beg, borrow, and steal.

She is smart enough to understand autism, that her brain works differently from the majority. There is nothing more painful than seeing your child realize that the entire world looks at her strangely, that the entire world is always going to underestimate her, think she doesn’t understand their judgement, or their condescension. And, that causes a pain inside of her that I can’t adequately describe.

She wants everything you ever wanted, I ever wanted. She wants to be a “normal” young adult who has friends, goes out, dates, falls in love, goes to college, has a career, marries, has children. All of it. She longs for it and if I could make every one in the world feel that longing, that pain of missing things we take for granted, there wouldn’t be a need for boxes and levels, there would be help everywhere, readily available.

There would be acceptance. And, that’s something I plan to write about in a couple of days. April is coming up. April is Autism Awareness Month. And, April 2nd is Autism Awareness Day. And, while I think we should always keep up with teaching awareness. I think it’s time we started focusing on acceptance and opportunity. But, again, I’ll save that for another blog.

Autism is just one of the reasons I’ve been away. Maybe I will touch on the rest here and there along the way. And, of course, I’ll get back to more posts about my writing.

Best,
H.