Friday, April 11, 2014

To parents of autistic children

First of all I will start by explaining that "autism parent" is a term that annoys me. It implies that the parent is the one dealing with autism. It seems to send a note of arrogance or self pity. It's not even grammatically correct. I reserve that term only to parents of autistic children that I find annoying or hateful, because in my mind that's what I think of when I hear "autism parent". Otherwise you are a parent of an autistic person.

Second of all how dare some of you try to define autism in YOUR personal terms? There are millions of us all over the spectrum, all with different abilities and sensory abilities. Just because your child is having difficulties in some areas does not mean they will never be able to talk, form relationships, or cook. But the way some of you talk about your children it's as if you've given up and you do not care to see improvement. You have no confidence, and provide no support for them to grow as a person, and guess what, people only ever grow as far as they believe they can.
Just because your child has an inability to do something, assuming that it can never be overcome, does not mean everyone on the spectrum is the same way. There are many health issues that affect many people, some are NT, some are autistic. Just because I cannot grasp my hands enough to cut or wash many things does not mean that you aren't "really" autistic because you can. Just because your child has sensory issues from smells, does not mean I too am affected in that same way.
Everyone on the spectrum has a wide range of abilities and disabilities. We each stim, we all have different sensor triggers, and yes, we all have emotions, including empathy.
High functioning autism, HFA, affects the brain in the same ways as classic autism with a few differences. In HFA there tends to be fewer autism characteristics, the person is generally able to communicate their thoughts and feelings more effectively, and while classic autism is correlated with a lower than average IQ, HFA is associated with a higher IQ. Including Albert Einstein, Nikola Tesla, Thomas Jefferson, and many other geniuses throughout time.
Now this is not to say that those with classic autism are stupid, or that everyone with HFA is smart, it is simply a difference in correlation. And perhaps with more improved ways of testing IQ we might find that those with classic autism are also more intelligent but less able to share with the rest of the population.

Just because we don't seem enough like what YOUR idea of autism is, doesn't mean we don't know more about autism than you. Chances are if you have this attitude you NEVER look at how autism affects the person, but rather look at how the autistic person affects YOU. From an outsider looking in perhaps it does look entirely different. As one youtube comment I read put it, one is simply "Emotionally constipated geeky types that can't get laid" and the other are people with "real issues that need help in daily life".
Yes perhaps it seems that way if you're looking from the outside.
But if you look at the mind, and how it actually affects the person it's the same condition.
HFA or classic, we can become over stimulated. For me this is when it is too cold, there are loud or conflicting noises, or there are bright lights or crowds of people. I find many smells soothing and use them to relax. Unfortunately my mother is allergic to perfumes and my stepdad has asthma so it really narrows down my ability to help myself via smell.
A non-verbal autistic person is also affected by stimulation in ways NT people are not. Due to being limited or unable to communicate their issues they express their discomfort in other ways such as tantrums, screaming, stimming, or violent outbreaks.
A verbal person might be able to say "This is getting too loud for me, I'm going to step away for a while." or otherwise be able to remove ourselves from the situation.

We are otherwise more likely to be able to sense things differently, such as hearing colors. I personally am not sure how that works or how it would register, but I do know it happens sometimes, and mostly in autistic people. We also are more likely to have eidetic (photographic) memory, and abilities to see or solve things that other people cannot.  It even makes some sense because our brains are wired differently so that we process stimuli differently, in the wiring differences it isn't entirely unlikely that strange and interesting possibilities occur.

I might not look or even act like your child, but that doesn't mean I'm not real, and it doesn't mean I'm not autistic. It means you simply haven't learned to look beyond your narcissistic surface.

Third I cannot stress this enough. Any therapy, technology, or "treatment" should have the goal of making the patient feel more comfortable and to improve their quality of life. Not to increase convenience of parents, friends, or caregivers. Many therapies and treatments to "help" with autism are focused on making the person seem more "normal" or to simply make them stop having outbursts. Not on actually helping to prevent overstimulation or other events potentially harmful to the person. These kinds of therapies, much like ex-gay therapy, relies solely on covering up, ignoring, and suppressing the difference. And like ex-gay therapy simply denying your nature and forcing yourself to not show your difference doesn't make it go away, it simply makes it harder to deal with. Some of these treatments have used electroshock therapy, bleach enemas, and other potentially dangerous, painful, and harmful methods that should be banned, and typically is.
If the person primarily benefiting from any type of treatment isn't the one being "treated" it's not real medicine, it's considered a type of abuse. I'm not sure how it translates to parents, but I do know in nursing that using chemical restraints is forbidden. Chemical restraints typically means using medical treatment to render the person unconscious, immobile, more agreeable, or easier to deal with for the purpose of staff convenience. (Giving needed medications to improve their quality of life, such as antidepressants in a patient that needs them, does not count as a restraint.)

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