Tuesday, May 03, 2016

April Was Autism Awareness Month

I’m going to say it. I just can’t stand the activism that treats Autism like a disease to be “cured” or “eradicated”. My reasons for having a visceral reaction to the language of Autism Awareness organizations that say “Working towards a cure” or similar verbiage start with my daughter, but they don’t end there.

Most parents live in Lake Wobegon when it comes to their kids. Of course we do. Unlike most American parents, though, I labor under no delusional that my child is a “special snowflake” that is somehow the benchmark by which all children before or since should be measured.

She is special, though. And part of what makes her special is her disability. Bear with me while I work this out. See, Autism Spectrum Disorder is considered a disability, specifically a learning disability for purposes of accommodations in the public school system. Thank you, President Clinton for signing the Americans with Disabilities Act in 1990. I was 16 and graduating from high school and had NO idea what that would mean to me as an adult. But it means everything.

Gabriella has Asperger’s Syndrome and Sensory Processing Disorder. And while some people look at it as “not really Autism” or “not as bad as Autism” or any other variation on that theme, it has impacted her life in very profound ways. And like it or not, critics, Asperger’s IS considered on the Autism Spectrum in the DSM. From Wikipedia:

The Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, offers a common language and standard criteria for the classification of mental disorders.

ASD (Autism Spectrum Disorder) is not technically a “mental disorder”. According to the National Institute of Mental Health, Autism Spectrum Disorder is:

…the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability.

So where does that put us right now?

Because she is wired differently, she sees the world differently. I like to say that she thinks so far outside the box that the box never existed in the first place. Her mind goes to places that it might not have ever discovered were she “normal”.
She is incredibly talented. Because of her disability, she has the ability to hyperfocus. Her ability to become so engaged with her artwork means she has a mastery that is rarely seen in a young person. It also, sadly, means that other things fall by the wayside. When she gets “in the zone”, you could drop bombs all around her and she would not notice. The uninitiated/unbelievers might say (and have said), “If she could oooonly apply that focus on [insert other thing], she’d do so well in [other thing].”

She is extremely sensitive. She feels things very deeply. Because of her disability, it often takes a huge emotional toll when the after-effects finally come home to roost. To this day, we still deal with the emotional aftermath of her preschool classmate who passed away when a small plane crashed into her house. It happened almost 10 years ago. But she still relives it almost daily. Especially when she gets close to people. She fears that something bad will happen to them, too. At the same time, her ability to feel deeply makes her very sensitive to the plight of others less fortunate. Some kids look at community service as something to be dreaded because it takes time away from “fun” stuff. She gladly will do community service because she cares.

She is incredibly smart even though she struggles with some academic subjects and especially on “assessments”. If you have a conversation with her for any length of time, you will end up impressed by how much she knows (if not her delivery style). Yes, it can take her a while to absorb certain topics, specifically procedure-based subjects, because her brain is wired differently, but once she gets it, it has been got. Permanently. There’s nothing she hasn’t learned that she has forgotten, I promise you.

When I think about all her strengths, even balanced against her weaknesses, that are directly related to her disability, I can’t even comprehend the merest inkling of wanting to “cure” her. Why would I change or eliminate what makes her an amazing human being? What would that say to her?

I’ll tell you what that would say to her:

It would say “You are less-than because you aren’t like everyone else”.
It would say, “You are a mistake”.
It would say, “You are a problem”.

People have equated ASD to other medical conditions like Diabetes in an attempt to get people to understand that saying things like “Why can’t you…” when the action is completely related to their disability and not something they can control easily (if at all). You would no more tell a Diabetic to just “get over” the Diabetes or tell a wheelchair bound individual to just “get up and walk”. But this does a disservice to the individual on the Spectrum.

It equates a neurological condition which can be helped only in certain circumstances (but certainly not ALL) by medication with a condition that is either controllable with medication or mitigated by assistive devices. Right now, the research shows a strong correlation to a genetic link with regard to ASD. It isn’t caused by vaccines. Or diet. Or environment. So please, do me a favor and don’t bring that up. Because when your child is almost a young adult, it’s unhelpful and rude for bystanders to armchair quarterback a woman’s prenatal health. It also makes you look stupid.

You might as well equate ASD with Bubonic Plague. Because that’s how my daughter takes your input. She has been ridiculed by her peers for being “different”. She has been verbally assaulted and told to kill herself to keep her peers from “catching Autism”. When you treat ASD like a disease and use language like “looking for a cure”, THAT is what you get.

New reports that people who commit atrocities who have a diagnosis of some form of ASD also add to the problem. Not every ASD person is going to go on a rampage and shoot up an elementary school. And yet, the first place news reports go is to that place. Then the cries of “Better mental health services” begin. Yes, there is a definite need for better mental health services in this country. But ASD isn’t a mental health issue by itself. ASD often is co-morbid with mental health issues. Depression, Anxiety, and more. Those definitely need to be addressed and treated appropriately.

My daughter is very outspoken and opinionated. Whether that is due to her diagnosis or she’s just like her mama (who learned it from her parents), is up for debate. She has her own voice. She’s incredibly self-aware. You might think that ASD folks aren’t, but you’d be so very wrong. In fact, many ASD folks suffer from anxiety because they are hyper-aware of how different they are and how they don’t fit into a society that caters to the “average”.

She doesn’t have social media because in her words, “I’m not ready for it”, so I’m her online ambassador. At almost 14, that shows a lot of maturity. What follows is from her heart:

She wants you to know that when you are “looking for a cure” what you really mean is that you wish she’d never been born. And by extension you wish that all Autistic people had never been born. Because if you didn’t, you wouldn’t want to change them from who they are.

She wants you to know that just because she is Autistic doesn’t mean she doesn’t have feelings or understand the world around her.

She wants you to know you can’t “catch” Autism any more than you can catch being stupid. (her words, gang, not mine)

She wants you to know that she isn’t “retarded”.

She wants you to know she isn't a mass-murderer in the making.

This is Gabriella.
If you have the courage to say any of the above things (or any variation on those themes) to her, I have a few things I want you to know.

I’m the one that has to console her when she is made to feel less-than.

I’m the one paying for the inpatient mental health facility stays because she was tormented to the point of self-harm due to her disability.

I’m the one who fights the fight to get her the services and accommodations she needs.

I’m the one you will have to go through if you hurt my child.

Because I care about every kid who struggles with the same issues Gabriella faces, that's why it doesn't end with my child. My heart goes out to every child who faces the same discrimination and backlash because of their disability and diagnosis.

For those who have children on the Spectrum who deal with profound Autism behaviors, I feel for you. I know that our struggles compared to yours are merely a drop in the bucket. I know that they are life-altering in ways that I can probably never understand. I know you are doing the best you can. Hang in there.

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