The Meaning of “Mild” Autism

On a Dutch autism forum, someone asks what “mild” autism means. There are several possible answers to this:

• Mild autism means Asperger’s Syndrome. This was the definition the person opening the thread referred to. She had a problem with this definition, because, even though she has an Asperger’s diagnosis, she is quite severely impaired by her autism. The only reason she got the Asperger’s label, is that she didn’t have a speech delay. In fact, this is the only significant difference within DSM-IV between autistic disorder and Asperger’s, if the person has an IQ above 70 – I recently learned that the expanded text of the DSM-IV uses other methods for differential diagnosis, like “active but odd” vs. “passive” social behavior, and technically you don’t need a speech delay for an autism diagnosis (it is enough if you have one feature from the “communication” criterion), but these are not universally applied rules. Besides, most of the differential diagnostic criteria between autistic disorder and Asperger’s, are based on early development, so what does this say about adult functioning?
• Mild autism means the person has an IQ above 70 (or 85, in some cases). This doesn’t say anything about one’s autism, but about the presence or absence of comorbid mental retardation. Why would the severity of one disorder be defined solely by the existence of another disorder?
• Mild autism means the person meets fewer DSM-IV criteria. Relatively speaking, then, again, Asperger’s can be considered to be milder than autism, because for an Asperger’s diagnosis, you need to meet only three criteria (out of eight), whereas you need six (out of twelve) for an autism diagnosis. I could be considered to have moderate Asperger’s, because I meet five criteria (as I walk myself through the DSM-IV right now, I forgot how many I met during my diagnostic interview). However, most people with an Asperger’s diagnosis will in fact meet some criteria from the “communication” set that isn’t included with their diagnosis, but less obviously than those with an autism label (I for one have periods when I use a lot of repetitive language, but am generally judged to have normal communication). Also, some people experience more trouble due to one area of impairment (eg. repetitive behaviors) than another, and may therefore meet fewer criteria but still be equally severely impaired. And, of course, I’m not even speaking about those autism symptoms that haven’t made it into the DSM-IV, like sensory processing differences, executive dysfunction, etc. I for one find these particularly impairing.
• Mild autism means few behavioral problems, like aggression or self-injury. Even though this is often assumed to be a logical determiner of severity, these problems aren’t anywhere in the DSM-IV as far as I know.
• Mild autism means the person can live independently, keep a job, etc. This may in fact be the most accurate determiner of functioning, and it has made it into the DSM as one’s axis V GAF (global assessment of functioning) score. The problem with this very raw guess about one’s ability to function in daily life, is that of course someone may function alright in one area and not function at all in another. For example, I am at this point unemployable for reasons related to my autism (of course I am unemployable for reasons related to my lack of education, too, but that is not the point) and cannot live independently, but I can be in a romantic relationship.

These are only the determiners of severity that have any merit at all. The ability to write coherently on the Internet, the lack of desire for a cure, etc., are just nonsense, and I won’t waste my and my readers’ time and WordPress’ webspace to comment on these.

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High-Functioning vs. Low-Functioning Autism

Besides the alleged differences between Asperger’s, Autism, and PDD-NOS, the other really arbitrary distinction being made in autism is that between “high-functioning” and “low-functioning” autistics. I know that I am not the first to write about this – in 2007, I can hardly be the first to write about any issue in autism anymore, and I’m usually too busy with other things to be the first in writing about anything anyway -, but I wanted to add my view anyway. Because I think that’s the easiest to do, I’m going to write up a list of assumptions about the LFA/HFA divide, and share my commentary.

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 mentally retarded range, are considered autistic as well as mentally retarded, 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 across), 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. In this sense, I’m like the amethyst from Dave Spicer’s description. I will have to elaborate on this some more when I have a better understanding of my own situation, cause a variation to this theme seems to be the distinction between theoretical knowledge and practical understanding, and I’m experiencing this big time now.
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 severe mental retardation lack the cognitive ability to exhibit some autistic features, such as routines. So are they “low-functioning” cause they are retarded, or are they “high-functioning” cause they are not severely autistic? This is a big reason why I’m glad the Dutch see autism and mental retardation as separate disabilities.
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 round, 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. Amanda baggs has written a good article defeating this myth as well as pointing out its capacity to damage autistic people’s lives.

Well, I’m sure there are other assumptions that I’ll have to comment on, but I cannot think of anything to add now. I think it makes no sense to classify someone as “low-functioning” or “high-functioning”. People are autistic and have fewer or more symptoms to a greater or lesser extent, and some of these people have an intellectual disability in addition to being autistic. That doesn’t make them “profoundly autistic”, it just makes them autistic as well as mentally retarded, and both of these disabilities need to be acknowledged in order to help the person live as fully as possible a life while remaining himself.

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Autism Realities: Personal Comments

Harold Doherty of Facing Autism in New Brunswick posted this article to his blog to prove the harsh realities of autism and living wiht an autistic child. I would not disagree that this child’s behavior is extremely distressing to the parents. I sympathize with this mother’s longing for more support. I can understand that she feels burdened, caring for this child on her own. However, that does not change anything about this boy’s human and civil rights.

I hate some of my own behavior. I hate it when I feel so frustrated and overwhelmed and confused that I throw objects or scream at people. I would love to overcome it. It was in fact what got us to go to the mental health place, and, even when I didn’t take the initiative, I still agreed with it. In fact, I even agreed to some vague idea that I don’t even understand beyond its having a waiting list that’s allegedly not too long. Go figure: I’m not saying I don’t have problems. Much less would I be saying that of anyone else, regardless of diagnosis or severity of behaviors.

I wouldn’t say it shouldn’t be figured out what causes this child to get aggressive and, if possible, to address that cause. For example, if he gets violent when trying to communicate something, his communication abilities should be improved, for example by having him evaluated for alternative augmentative communication or to get him speech therapy. I don’t think anyone, whether they’re autistic or not and whether they consider themselves self-advocates or not, would disagree. In fact, I feel offended by implications that people who advocate for autistic civil rights, don’t think this child has problems. I myself struggle with milder behavior difficulties and don’t have labels, but still consider the problems significant. Simple behavior modificaiton (as in, just punishing me) may not work, but maybe some other strategy will. I wouldn’t have gone to the freaking mental health ccentre if I thought people should just accept my aggression, so don’t pretend that that’s what I say.

What I do say, is that I don’t want to be turned into something I’m not, and I don’t wish that upon anyone, including this child. The aim of support or treatment for this child, or me, or anyone, should not be to “normalize” them. When in the February 21 discussion with the mental health folk, for example, she was asking my father if I could talk on and on about one subject. He said I do that, but it doesn’t bother him. Even if it did bother him, it doesn’t bother me and it doesn’t put people in danger, so there’s no need for me to get over it, much like I don’t need to overcome my high IQ by learning to act dumb. Likewise, a child who spins round objects, doesn’t need to have that behavior extinguished, I think. He might be communicated that others find it inappropriate, if he has the level of understanding to comprehend that, but it’s not something that puts the child or other people in danger. That’s how I mean not forcing someone to become something they are not. It’s perfectly fine to help a child overcome dangerous behavior (if done in an ethical manner), but that doesn’t take away that child’s right to be himself. And yes, this kid *is* autistic, and there’s no point in scratching that off like a mask, cause there is no normal child underneath the autism.

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Initial Thoughts on Cal Montgomery’s Critic of the Dawn

There are a lot of things I want to write about today. Mostly, they are concerned with the strange dichotomy that Cal Montgomery discusses in her article Critic of the Dawn, where there is some line in cognitive or behavioural functioning, above which people are supposed to be good enough to have a voice that will be listened to, and below which people are supposed to be bad enough to be “cared” for or “treated” and, by this grace, lose their ability to have a voice. The “good enough” people, however, don’t need their voice to communicate their needs – they are “good enough” to adapt to society’s demands – and the “bad enough” people can’t communicate their needs in an effective way – they’re “bad enough” to have others do that. And here I am, with a clear voice that I can’t always use, an analytical ability that’s compromised whenever situations are too unclear, and bad behaviour that I realize but can’t change. And here are others wanting me to be “good enough” so I can use my voice and people making decisions for me whenever I’m supposedly “bad enough”. To give an example from the mental health department: eventually it went alright – well, it didn’t of course, but that was not for others’ sakes; but, principly, it greatly angers me that I was very ill-informed about the whole procedure leading up to that December 12 appointment. No-one said anything I disagreed with in front of a healthcare professional, but principly, I feel I was left out of the decision-making process in some really fundamental ways. Apparently, by November, I was “bad enough”. This may’ve been compensated by the expectation that I clarify my own reasons for wanting to go to mental health after the failed December 12 appointment and my being left to my own resources at the family doctor’s yesterday. In this situation, I’m assumed to be “good enough”.

There are other, less fundamental, examples. I was greatly angered this morning when I went up to Renee asking her to help me with some scheudling for Tuesday. I was “good enough”, cause I had a voice. She refused cause, she said, I could do it myself. Well, I’m not asking you for help cause I can do something myself. She and Arda got into a decision-making litanny and I felt confused by everything they said about how I could get up at 8:15 AM if I wanted to (I told you I didn’t want to) and how some people lie in their beds till 1:00 PM on boxing day (I told you I had things to do, that’s why I asked you to help me schedule). Then, for some reason, I became “bad enough” and now Renee is angry with me, understandably and rightfully, for misbehaving. Okay.

The thing is, there is no such line. I’m “good enough” to have a voice and to want to use it and to want to be involved in decision-making even if the result is something I agree with and to want to be allowed to ask questions if I think I need answers and I’m “bad enough” to not be able to use my voice all the time and to have difficulties in communication and behaviour that get me and others to wonder what might or might not be wrong with me and hence contact mental health and to be unable to communicate these same difficulties sometimes and to sometimes need help with such things as scheduling (while, I might say, this is only when things are unusual, cause I always do my own scheduling). And I’m “good enough” in some situations and “bad enough” in others and sometimes I’m both “good enough” and “bad enough” at the same time. So what? I’m still me. Of course I want to understand, but that doesn’t change anything about that situation of mine. If I’m assumed to be “crazy”, that doesn’t mean I don’t have anything to say even when I can’t always communicate for whatever reason and even when I may behave in ways that adults aren’t supposed to, and if I’m assumed to be fine, that doesn’t mean I can suddenly communicate and behave.

By the way, before anyone tells me: I know Cal Montgomery’s labels, but that’s not how I found her article. I learnt about it when reading activist anti-ABA articles a few years ago and I agree to its emphasis, so there.

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