I've written before on why I shouldn't work with autistic kids. A distinct, but related issue, is whether I should advise people who suddenly find themselves with newly diagnosed children, relatives, or young people about whom they care. Honestly, this comes up far more often and is much harder to dismiss for two reasons. First of all, it is hard to dismiss someone in a state of mild to severe panic asking for your help. Second of all, while I definitely feel I'd be of little help directly interacting with autistic kids personally, it is also clear to me that I have a unique knowledge of autism and a skill set for communication that makes me an effective advocate. All that being the case, I will use this article to present what advice I can offer if one finds oneself in the unfortunate position of finding it relevant to the lives of people about whom they care. Other autistic adults have found me to be a useful confidante as well, but that's another matter and another article.
So you find yourself with a kid in your life on the spectrum. My first advice to you is the same as the advice The Hitchhiker's Guide To The Galaxy would offer you. Don't panic. Lots of reasons you might panic are foolish and, besides, panicking won't help. Depending on the age of diagnosis, a lot may be explained by the knowledge of the condition. For example, if the kid never managed to ride a bike, couldn't stand to be touched, had noise sensitivity, obsessive interests, gastrointestinal problems, poor social skills to the point of a complete inability to make friends, or a reliance on stereotyped behavior to accomplish tasks, to name a few, you might find you now have an explanation. Now, you may not find all of those. Autism is like a big ol' bowl of marbles and each autistic reaches in and grabs a handful. Each marble represents a trait of autism and what traits present indicate a great deal of what you can expect.
Let's talk severity. High-functioning autistics are going to be strange in a way others won't quite be able to put their finger on, but they'll subtly know something is, "off," about them. However, they may be able to form friendships, maintain relationships, and achieve gainful employment, depending on how well they develop coping mechanisms through specialized therapy. More on coping mechanisms later. Low functioning autistics can have a variety of undesirable traits. They may be entirely nonverbal, rock back and forth, have no discernible ability to interact with the outside world, and even in a persistent catatonic state from which they will never emerge. Generally speaking, you'll know if the kid is low-functioning without getting tests done and, if that's the case, you'll have a long and heartbreaking road ahead of you. I'm not going to sugarcoat this. A low-functioning autistic is a dependent you will have for the rest of your life without significant medical breakthroughs.
An autistic kid in therapy will have one goal as an outcome of said therapy, which is developing coping mechanisms. Coping mechanisms are the ability to simulate behavior or other capabilities of neurotypicals (those not on the spectrum) and are crucial for achieving the goal of independent living. For high-functioning autistics, tasks like paying bills, maintaining personal hygiene, and getting up and going to school/work every day shouldn't present a problem, so the focus of coping mechanism development will mainly be in improving social skills, relieving anxiety, and improving dexterity and coordination. If you don't think dexterity and coordination can limit you, bear in mind that I am unable to operate a broom or mop correctly. Low-functioning autistics take more work to develop coping mechanisms and the goals are more basic. Things like getting them to talk or accept human touch are often the best one can expect to achieve.
The hardest question you're going to ask yourself is going to be, "What happens to my child/relative/kid I care about when I die?" Ideally, the answer to that is that they will have developed enough coping mechanisms to have achieved independent living, but we don't live in an ideal world. I am not capable of independent living and my family set aside money for me for this reason. Generally, it's good to come up with an answer to that question, just in case the autism is too acute, despite the best efforts of everyone involved. In Missouri, autistics can qualify for disability, and I know one who has done so. That's enough to eat and keep a roof over one's head, but not much else. Cures and treatments based on augmenting the unique autistic gut flora and gene therapy are in their infancy, but kids today might be able to be cured of it one day. Children with autism are dealt a stroke of bad luck I would not wish upon anyone, but know that there are things you can do to fight back. This is a long road that can end in great sadness, but don't let that stop you from going down fighting.
-Frank
No comments:
Post a Comment