I follow a few autism-themed Facebook pages (there are surprisingly many and surprisingly many good ones). Today this was posted as a status on a page called Autism Discussion Page:
“Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).
This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.
Making matters even more complicated, is the variability of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.
The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses.”
It’s an interesting distinction. But the two planes could also affect one another, could they not? For instance, minimal personal care skills could be caused by sensory problems that make the person unwilling to deal with their own body because physical sensations are too overwhelming. Then the cause is not intellectual disability/low cognitive functioning, but an autism symptom. This, however, isn’t necessarily readily apparent, and parents, caretakers, or others close to the person may believe it to be a matter of ability rather than willingness if the person isn’t able/willing to communicate what the problem is. Similarly, someone may be nonverbal due to high social anxiety stemming from an inability to relate to and be understood by others – then we’re again dealing with a (secondary) symptom of autism and not something to do with cognitive functioning.
Indeed, it seems that an inability to deal with the outside world and an inability to communicate e.g. in the form of speech are more often symptoms of autism-related problems – being overwhelmed and feeling abused by others’ ‘NT’ approach – than symptoms of low cognitive functioning.
I read an article in Danish about Kristine Barnett’s experiences with raising her son the other day – I won’t post it on this English blog, but there are aspects of it in this article: http://www.theglobeandmail.com/life/parenting/how-kristine-barnett-nurtured-her-autistic-sons-spark-of-genius/article12752500/ One thing that’s really interesting about her story is that her son was nonverbal and pretty much completely nonresponsive until she changed her approach from ‘fix him so he can become normal, by treating him like he’s retarded and needs the same teaching aids as other kids, but on a lower level’ to ‘let him explore what he’s passionate about and let him learn that way’. This turned him around completely to being able to communicate his extraordinary intelligence in a stunningly short amount of time. It just confirms what I can deduce from my own upbringing: Autistic children, much like other children, become what you expect of them. Treat them like they’re low-functioning and dysfunctional, and they become (or stay) low-functioning and dysfunctional. Aid them in their strengths (or just encourage these strengths), and they become stronger – faster.
My personal experience is that it’s possible to be ‘high functioning’ enough that nobody believes you’re autistic even if you tell them – but at the same time have very severe autism symptoms. Infact, I’ve found that the better I fit in (i.e. the more socially streamlined I decide to work at being), the more I experience “rigid inflexible thinking” (I react strongly and negatively to changes in routine), “strong sensory issues” (I often experience hypersensitivity, sensory overload and shutdowns), “poor emotional regulation” (I go numb and sometimes have inexplicable strong, uncontrollable emotional reactions, e.g. anxiety or panic attacks), “delayed processing” (I’m constantly overloaded with information, mainly that coming from other people’s body and verbal language), and “impaired ability to relate with others” (others piss me off and confuse me endlessly because I can’t find a way to enjoy their company when I hang out with them as much as a ‘normal person’ is ‘supposed to’ ‘enjoy’).
I guess it could also work the other way around – e.g., if someone is very verbally adept, they can make up for some of the ‘glass wall’ effect of delayed processing and an impaired ability to relate to others. Put plainly: being good at explaining your difference (and knowing intimately how to phrase it in a way that doesn’t piss anyone off or sound unbelievable) can make a person more socially connected. Simply being verbal can help a person find the products they need that don’t itch or hurt, so that they can get better hygiene. Excellent academic insights may provide a job with a stable income that helps a person afford special products and services that minimize sensory overload. Etc.
I guess high/low functioning is a term for how well a person manages in the everyday NT-governed world – and mild/severe autism describes how autistic they are. Mild and severe are quite inaccurate (and offensive) terms, I think, because as the above distinction makes clear, problems with functioning don’t stem directly from autism. They can interconnect with and have their roots in autism (slash the clash between autism and the way society, available products, and the social sphere are organized), but are not necessarily results of it, nor do they always appear in those who are ‘severely’ (i.e. very) autistic.