Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn't necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it's just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I'm trying to find an accessible and understandable explanation of this, but can't seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn't speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It's in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It's probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Autism Treatment and Acceptance Are Not Mutually Exclusive

Oftentimes, there seems to be a dichtomy between those autism advocates who want treatment, and those who want the autistic to be accepted. Usually, parents of people with more severe autistic symptoms and/or intellectual disability want their autistic to be cured, while those autistics with more intellectual and communicative abilities advocate acceptance. This is not always the case, of course, but often it is. Therefore, it is somewhat understandable that autism parents tell autistics that we are not like their child.

What I want to discuss in this post, however, is whether treatment and acceptance are truly mutually exclusive. Of course, a cure that will fundamentally change a perosn's information processing, is contradictory to accepting that processing difference. However, at this point there is no such cure, like genetic engineering or neurological rewiring, which is what it would take to make autism go away entirely.

Do these autism parents who advocate cure, truly want their child's every autism symptom to go away/ I do not know, but it is possible that what they truly want to go away are certain aspects of autism that are debilitating to the child. I do not disagree with this. I, too, take medication to help curb my irritability, for example.

Truly, would you want your child's autism to go away if it made them a very much in their interest invested professor, if a quirky one? It is known that Temple Grandin is autistic, and yet she reached Ph.D. status. If I have to believe her own statements, this is largely due to her special interest and her good ability to empathize with animals. The same likely goes for other "higher-functioning" autistics, but then again these are discredited for disagreeing with the curebies.

Now I get to acceptance. As I wrote in a previous post, accepting the person is different ffrom accepting their every behavior. Hardly any autistic would want themselves or another autistic to be continually aggressive or self-injurious. Also, most parents tht I've met online who advocate treatment for their children's autism, actually love their children to pieces. There are a few who wish their autistic child were taken back by the changelings, so to speak, but these are rare.

So really, is it hypocritical to want treatment for autism if you want to be part of the autistic acceptance movement. While a complete eradication of autism, and thereby autistics, is contrry to acceptance, treatment for the most severe and disabling symptoms, is absolutely not. And this is where views often clash: those with more severely autistic children, want to pretend that treatment will eradicate all autism, and they at the same time pretend that those who disagree, are not autistic at all. Well, fine with me. If you want your child to be like me in terms of functioning, that's okay, but that is not curing them.

ETA: with my sentence about my understanding that parents want their kids to function like me, I didn't mean to place myself above autistics who appear to be "lower-functioning". I realize that's how it comes across. I do want to say that I understand, for example, that parents want their children to have a meaningful way of communicating or have minimal aggressive or self-injurious behavior. I do not feel that any autistic should be forced into neurotypical appearance.

High-Functioning vs. Low-Functioning Autism: Some Common Assumptions

This post was adapted from a post I originally wrote in 2007 and which I've since crossposted to various old blogs of mine. I still like it though.

Autism is a spectrum disorder. There are many differences between individual autistics. Where it gets tricky, however, is when we categorize autistics into specific boxes that are mutually exclusive. This is what happens when we speak of "high-functioning" and "low-functioning" autism. Below, I'm going to write up a list of assumptions about the LFA/HFA divide, and share my comments.

1. Low-functioning means having an IQ below 70. Well, this is one of several pretty official distinctions being made. The problem is that it's often hard to determine IQ in people with autism: some people may seem high-functioning at first, but their IQ drops as they age cause of increased developmental demands - something that is extremely common in preemies (autistic or not). Others' IQ jumps by sometimes as many as 50 points as they learn to use a communication modality that others understand. Here in the Netherlands, autistics whose IQ can be assessed as being in the intellectually disabled range, are considered autistic as well as intellectually disabled, so they essentially have two disabilities that may influence each other and each influence the person's functioning.
2. Low-functioning means non-verbal. This is the other kind of official definition. The only thing it omits to say, is that non-verbal does not necessarily mean unable to communicate. Speech, after all, may not be communication (I sometimes hate it when people assume that everything that comes out of my mouth is intended as it comes out), and communication does not need to mean speech.
3. Autistics will always function at the same level regardless of circumstances. I hate this assumption, and have always hated it, whether you relate it to autism or not - I hated it years before I was labeled autistic or even suspected I was on the spectrum. In my own experience, this prejudice comes in the form of "You're so intelligent, so ..." statements. Some people who make these assumptions, can simply be directed to Stephanie Tolan's article on asynchronous development, but even those who know about this, tend to have difficulty grasping the concept that I do not always function at the same level. I still have a lot of difficulty grasping this concept myself: that, when I'm overwhelmed, I don't have skills that I have when I'm in a quiet state, most prominently communication abilities. So, when someone sees me here on the computer typing out a review on the HFA/LFA distinction, they may assume I'm very high-functioning, but you wouldn't guess so when you'd see me when I'm overwhelmed.
4. Low-functioning means severely autistic. Well, number of symptoms and functioning level in either of the two relatively official respects, are quite different. In fact, some people with a severe intellectual disability lack the cognitive ability to exhibit some autistic symptoms, such as routines. So are they "low-functioning" because of their IQ, or are they "high-functioning" because they are not severely autistic?
5. High-functioning individuals do not exhibit certain behaviors, such as self-injury or aggression. So, when someone does exhibit these behaviors, they must be low-functioning? I'm not proud of this, but this belief makes me pretty low-functioning. Often, however, it's used the other way around, in that people who meet someone's stereotype of "high-functioning" (eg. the ability to disagree with Autism Speaks in a way that they can read/listen to), is discredited for certainly not having serious problems. This assumption is not only wrong, it is dangerous to autistic people's wellbeing and health.
6. High-functioning autistics live independently, while low-functioning autistics don't. Many factors contribute to an autistic's ability to live independently. Of course, an intellectual or communicative disability may make it harder, but so does severe executive dysfunction or the risk of certain behavior problems or mental health issues. The concept of independent living is also oftentimes wrongly perceived as black-or-white: some people live independently, but do get home support, or they live in settings with 24-hour assistance but still have their own apartment, or they live with their parents till age 30.

Please note that, again, I am not saying that autistic individuals do not differ from person to person. I am not even saying that there are not various cotinuums of funcitoning. There are, however, so many that it is entirely arbitrary to draw a line between the HFA category and the LFA category. I hope I've made this clear in this post.

Disability Hierarchies

Last week, K at Transcending CP wrote an interesitnb blog post on the "us" vs. "them" mentality non-disabled people have about people with disabilities. I commented and mentioned several ways the disabled themsleves have an "us" vs. "them" mentality towards other disabled people. Today, I want to expand on this by discussing disability hierarchies.

First, there is the hierarchy of severity of one particular disability. For example, at the school for the blind which I went to from fourth until sixth grade, the people with some vision had a lively competition of who could see best. We even used to introduce ourselves as "Johnny who has 20/400". I only actively competed in my first year at this particular school, because in fifthe grade, the partially sighted children (I was going to write "partials" here) and braille readers were merged and I was in a class with only one other braille reader with some vision, who avoided this competition it seemed.

Similarly, among autistic people there is a competition. If you go to Wrong Planet or another Aspie-dominated site, you'll see that most people there don't want to associate with "low-functioning" autistics. As a person who is only "high-functioning" in terms of IQ and who despises this hierarchy, I don't like this. It's like those with "low-functioning" autism have no right to the acceptance that the "high-functioning" want.

Then there are disability hierarchies that cross lines between different disabilities. An example is my having bullied an intellectually disabled child when I was at the aforementioned school for the blind. I apparently felt that intellectual disability made someone less of a worthwhile human being than visual impairment. I don't think I actually thought that deeply, but I did bully this girl because of her intellectul impairment. Adults with physical or sensory impairments do have the ability to actually think about this, and it is reflected in statements like "You may be able-bodied but I am able-minded".

Conversely, the more visible disabilities tend to be viewed as more "real"by some people than developmental or psychiatric disabilities. As a poignant aexample, my psychologist, when describing my disabilities, only mentioned my visual impairment and my slight motor deficits. Also, when I was still on the locked ward several years ago, there was a partially sighted, hard-of-hearing man on my ward who obviously also had severe mental illness. Because of his limited but existent sight and hearing, he was expected to do a few chores that I, being totally blind, was excused from. At one time, I heard a nurse tell him: "You may be twice-disabled, but you are not thrice-disabled."

For a long time, disabled people have been "them". The Black civil rights movement was grounded in the belief that Black people are just as capable as Whites. Then the blind and physically disabled and Deaf movements were grounded on the idea that people with sensory or physical disabilities are, with reasonable accommodations, just as capable as people without disabilities. Now people with developmental and psychiatric disabilities are demanding civil rights, an sometimes this si grounded on the same principles, hence creating a new "them" for those who don't meet the "just as capable" standard. It is my hope that, at one point, we can live without the "us" vs. "them" mentality, but this hope may be idle. After all, as a human race, are we truly evolved enough to recognize each of us as equal? And if we were, then animal rights activists would say that's still not good enough. Rights activism always demands a shift from "them" to "us" but will there ever not be "them"? And if so, will we survive?