Tuesday, July 23, 2013

For the love of the children

If you pay attention to the news at all, you've probably read about at least one gay teen who committed or at least attempted suicide. It is well documented that suicide rates among LGBTQ youth are significantly higher than among the general population. While reviewing research literature that would comprise the backbone of my senior research proposal, I was shocked by how many studies show that sexual and gender minority youth are at such a greater risk for suicide and substance abuse. It's heartbreaking. 

But less well documented and certainly less talked about is the fact that rates of suicidal thoughts are 28 times higher among autistic children than among their typically developing peers. Twenty-eight times higher. Let that sit with you for a moment. Autistic kids are 28 times more likely to consider ending their life than are non-autistic kids. That's devastating. 

Different explanations for these statistics are thrown out there. Bullying is certainly an issue. I'm really thankful for the Day of Silence campaign, the It Gets Better Project, and the StopBullying.gov website. The first two are specifically dedicated to bringing awareness of anti-LGBT bullying, as well as providing hope. I'm thankful for this, and I think the It Gets Better Project has done a lot of good. It's exciting to see so many celebrities and even President Obama get on board with this.

Anti-autism bullying is prevalent too, and seems to be a likely cause for the higher rates of suicidal ideation. I wish that there would be campaigns out there to bring awareness to this. If it's true that 1 in 88 children (or whatever the current stat is) have ASD, then I feel like this should be a pressing issue, a significant need. I hope that one day it will be.

So yes, bullying is an issue. But honestly? I think most of these suicidal thoughts and attempts can be prevented simply by having an accepting and supportive home environment. If kids know that they have a safe base at home where their parents and siblings will provide love and encouragement, I think that this wouldn't be nearly the issue it is.

However, the fact of that matter is that many times the home is where these kids receive the least amount of unconditional acceptance. It is a well known fact that many LGBT youth face rejection from their families, and are often evicted from their homes.

This post was inspired by the fact that I recently heard a dad say about his autistic daughter, "I wish we had a normal child." Read that again: I wish we had a normal child. When I heard this, I was so angry I couldn't even speak. You know what's worse? This kind of sentiment among autism parents is very common. You won't always hear them saying straight up that they want a normal kid (but sometimes you will!). What you often hear is that they "hate what Autism has done to my child" or "Autism stole my child from me" or "I wish my child wasn't autistic" or "we need to fight for a cure for Autism." All of these things have the same thing at the core: non-acceptance of their autistic child.

You see, Autism can't be separated from a person. Wishing for a non-autistic child is wishing for a different child. It's refusing to accept and love the child for who they are. Autism doesn't steal children. Autism isn't a leech or a disease that reeks havoc on people. Yes, autistic children will be different from allistic (non-autistic) children, but different is not less.

Trust me, autistic children know when their parents don't love them for who they are. Even though we might not read every single bit of body language, we're not stupid when it comes to things like this. That sort of daily rejection of one's personhood very often leads to depression, which can lead to despair, which can lead to suicide.

Statistic don't lie. And these statistics that I cited today should be very sobering. They are to me. Especially because they relate to my two communities--the LGBT community and the Autistic community. These are my people. These are good people. And they deserve to be loved. And accepted. And cherished. They deserve to know that they have an unalienable right to life. 

So please, for the love of the children, do what you can to make sure that these minority kids know that we need them, and we love them, and the world is a better place with them in it.

Sunday, July 14, 2013

Why ABA therapy unsettles me

First, a crash course in what ABA therapy is. ABA stands for Applied Behavioral Analysis. In short, ABA therapy initially inspired by B.F. Skinner's work in operant conditioning. Basically, ABA is used to modify behavior, primarily by means of rewards and punishments (the psychological terms are reinforcers and punishers).

ABA therapy is the most commonly used form of therapy to "treat" ASDs. Specifically, the Lovaas model is used. This model recommends 30-40 hours of therapy per week in order to gain the best results. This many hours is recommended for children under the age of five. Yes, you read that right. Proponents of this model assert that autistic children aged 5 and younger should be in full time therapy. If that makes you uncomfortable, good. Sit with that discomfort.

And now I'll put up this disclaimer: I do not know everything there is to know about ABA. I have not personally been subjected to it. However, I have observed it in practice, and I have read numerous accounts by Autistic adults who decry it. I do know many Autism parents say that their child has greatly benefited from it. I will not be making sweeping generalizations and saying that all ABA is bad. However. Autistic voices should weigh more heavily than non-autistic voices in this matter, and there is enough bad out there to make me very unsettled by ABA in general and certain core tenets of it in particular.

My first problem with ABA is that it approaches Autism from the perspective of something that needs to be treated. It says that certain (many?) autistic behaviors need to be modified and made extinct. So from the outset, it is not respectful of Autistic people. It reeks of ableism, emphasizing that there are certain behaviors which are better or more right than other behaviors. ABA operates from the basic tenet that Autistic behaviors are not acceptable. This unsettles angers me.

One thing that ABA therapy does is it tries to teach autistic kids to engage in "functional play". I.e., "functional play" is however the neurotypical, non-autistic kids play. This is implying that the way autistic kids choose to use (or not use) their toys is dysfunctional by nature, and the autistic kids need to be retrained how to play in "functional" (read: normal) ways. This is absurd and I'm not okay with this. I hope you aren't either.

My second problem is that ABA therapy is a lot like dog training. Or more accurately, rat training. B.F. Skinner did his operant conditioning trials with lab rats. He used rewards and punishments to train his rats to push levers and go through mazes. He trained his rats to act in ways that were not natural for them. Your average dog owner applies similar behavior modification techniques to train their dogs to sit, stay, heel, etc. I'm unsettled angered by the fact that the leading "treatment" for Autism is often not too different from how we train animals.

"But Rae," you might protest, "what if kids engage in self-injurious behaviors (SIBs) that are damaging, and what about other problem behaviors? What about teaching them to communicate and other basic skills?" I am not denying the fact that there are certain interventions that may need to be employed. I'll reiterate this: My number one problem with ABA is that it often does not respect the basic human rights of an Autistic child and instead views them as less than human who need to have certain behaviors trained out of them (much like dog training), and replaced with "normal" behaviors. It operates from the viewpoint that Autism is lesser and needs to be fixed. It is steeped in ableism and posits that acting non-autistic is preferred.

So. If interventions and therapies do need to be used, they should start with viewing the autistic child as a person possessing inherent worth, not as a diseased/lesser person that needs to be fixed or changed or healed or treated. Start by seeing the autistic kid as a human being with unalienable human rights, and you'll be okay.