Monthly Archives: August 2013

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.

Excusing or Accepting

Many of the people who commented on my previous post, most of them likely unfamiliar with disability rights, commented on a particular part of it: that in which I talked about disabled people being carelessly excused from meeting normal expectations. While it is true that a disabiity in itself should not be a reason to excuse people, in the sense that people think of the disabled as pitifu and therefre to be excused, disability equality goes far beyond equal expectations. Actually, unless a disabled person commits a crime, they are entitled to the same civil rights and inclusion that abled people are. “Normal”, that is, non-disabled standards of performance should not be relevant here.

People have a right to acceptance, and, while this means they should be expected to behave in an acceptable manner, what this means is really up for debate. Is an autistic not acceptable because they scream? An effort should of course be made to help the autistic unlearn this behavior, but if they can’t, that doesn’t make them less acceptable as a person.

We need to make the distinction here between the behavior and the person. All people have some annoying behaviors that are unacceptable to at least a number of others. We can disapprove of this behavior, but we shouldn’t be excluding the person for this. Note, please, that my comment about annoying behavior goes for disabled as well as non-disabled people. Once a person has a disability, however, accepting them in spite of inappropriate behavior is often seen as excusing.

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?

To Medicate or Not to Medicate?

Yesterday, I was searching for autism bblogs and stumbled across Pam Byrne’s blog. In one of her latest posts, she writes about her son’s increasing and then decreasing behavior problems. One of the things that stuck out to me was the tough choice Pam made to medicate Alex.

Back when I first learned aobut autism, it was through Autistics.org and other autistic advocacy sites. I was a firm opponent of medicating for behavioral control, believing that an autistic child or adult should be helped with proper supports, not dulling meds. Particularly neuroleptics (antipsychotics) can cause severe cognitive dulling and other side effects with autistics, so I reasoned one should stay away from those especially.

That was in like 2006 to early 2007. In July of 2007, however, I was about to move to a new city and into independent living. I was having terrible meltdowns related to this. My community psychiatric nurse suggested a psychiatrist’s consulttion, and I agreed. The psychiatirst listened to my story and thought for a bit. Then she started to describe what she thought medication should do for me, and I paged my inner pharma encyclopedia to find out what she might be thinking of prescribing. She suggested Risperdal, an antypical antipsychotic. I had little opportunity to change my situation in any other way – the move, that was one of the worst moves in my life, had already been scheduled for the next week -, so I felt I had no other choice but to consent to the medication.

This was a bad choice: I had quite serious side effects that weren’t being taken seriously, and the med was used to dull me into submission when in fact living on my own was not suitable for me. I tapered myself off the Risperdal two months into my new living situation. Three weeks later, I landed in a psychiatric crisis tht led to hospitalization.

The psychiatrist who admitted me into the hospital recognized the need for better supports rather than medication. I agreed and was med-free apart from a PRN tranqilizer now and then for over two years.

However, supports have their limits. Especially in a society that relies on massive budget cuts, it’s not like you can actually get perfect supports. I at least can’t. Also, I have always wondered whether medication could somehow help me reduce the overlaod that is actually quite inherent in my experience of autism. Medication should not be used to manage behavior in an unsuitable situation, but what if one’s support situation is as suitable as can be? Could meds actually calm the autistic mind when it is nonsituationally unquiet?

I asked to be put back on meds in early 2010. The medication suggested by my psychiatrist this time was Abilify, another atypical antipsychotic. And to be quite honest, I like it. I started at a very lwo dose, which had to be increased three times. Not always did I agree to this, in the sense that on occasion I’ve felt that supports could’ve been improved, but they won’t whether I’m on meds or not. I have minimal side effects even on a pretty high dose of Abilify, and I can tell, three weeks after my l ast increase, that I’m happier this way. So is Pam’s Alex. Of course, with a child or non-communicative or intellectualy disabled adult, it’s harder to tell whether the person is truly happier than with a person like myself, who can communicate reasonably well. This is why I still advocate taking proper care when thinking of putting a child or communicatively impaired or intellectually disabled adult on an antipsychotic. These meds do dull cognition, and it can’t be known in these cases whether the person is truly less irritable. I strongly oppose the idea that this is not important, except when a person is severely aggressive or self-destructive. In cases other than this, a person should only be put on meds if they’ll actually be feeling better. I do, and going on Abilify was therefore one of the better decisions I’ve made in my life.

Missing Out on Motherhood

I posted about this several times before on my other blog, but am going to write about it again. I miss being a mother. This may seem strange, because I choose not to have children. Oh well, circumstances wouldn’t allow me to have kids, but I still consider myself childless by choice.

What I actually miss, is not having a wee one run around my house bawling, but having the privileges that motherhood awards. Of course, you can’t have the privileges without the hardships, so I don’t mean to say that mothering is all rose-colored. What I do mean, is that there are a lot of privileges in our society for mothers. I can’t explain this I’m afraid, but I feel like, well, it’s assumed that every woman over a certain age (thank goodness not yet my age) is a mother.

Maybe, then, it’s not so much the material privileges I miss, but the sense of identity motherhood awards you. Women-focused magazines, websites etc. are 90% mother-focused. It makes me feel like I’m missing out on something.

I must confess, I have at one point, under the name of my motherly part, joined mothering communities that don’t say they are exclusively for Moms. This may not be appropriate, like my at one point having joined a teen forum without saying my age is not appropriate. IN fact, I only benefit from being female here or I’d be seen as a pedophile.

It seems like maybe what I miss is having that part of an identity that is not disordered. There’s little out there for twentysomethings, maybe because they dominate the Internet, so I can’t really consider that identity-shaping. Other than that, I have womanhood – but as I said, 90% of being a woman is being a Mom -, and I have my various disability statuses. I don’t want to be a minority person in every aspect of my life.

Reasons to Be Cheerful

I didn’t go to sleep till 4:00 AM last night and awoke at 8:30 this morning. Have been blog surfing for just a bit too long. I’m loving the new blogs I discover. Mostly, they’re Mommy blogs. Seems a bit strange given that I’m childless by choice, but I actually love them.

There’s a blog hop over at Looking for Blue Sky, one of the parent blogs I discovered, on reasons to be cheerful, and I’m going to try to participate if I may. If I’m not allowed to cause of not being a Mom, I apologize.

I have a lot of things to be cheerful about that I don’t always think of. Today, the relatively new activities staff person will come to my ward, and she’s really nice. As a result, I will be able to make some pretty cards this afternoon. Cardmaking can be frustrating, but when I’m successful, it really cheers me up. I have a Christmas design in mind which I hope will satisfy me for once. Last week, I was also very cheerful over a Christmas card I made.

In related news, my jewelry making supplies will likely arrive in the mail today. I try simple jewelry making as something to complement my paper crafting when I need something more tactile. Right now, I have some wonderful handmade polymer clay beads waiting to be stringed on a wire. I made them in green and gold glittery Fimo, which I’ve heard is quite a rare color combination. I chose it myself.

Then there is the lovely blogosphere which I’m part of again. I know, I’ve been blogging off and on for years, and a few posts are no guarantee that I’ll stick to this blog, but I really plan to.

Lasly, the weather is beautiful. It’s in the 70s here, which is good for late August. There is some rain now and then, but it’s also sunny at times. Have a great day!