Personally, I think the problems with the labels are mainly misunderstandings. There are a lot of stereotypes & black-and-white thinking about functioning labels, which don't reflect how I think these labels should be used.
First, there's the idea that 'LFA have no strengths, HFA have no disability'. This is a stereotype. Even the most LFA individual has some areas of strength that should be recognized and acknowledged. And many LFA people have a lot of strengths. If you define LFA by adaptive functioning (which to me makes the most sense) then there are some people with high IQs who are LFA (such as Carly Fleischmann). And even if they also have cognitive disability, it's important to look for and acknowledge their strengths.
And as many of us here know intimately, HFA is still very much a disability. I'm HFA and can't live independently - my adaptive functioning is only mildly impaired, but that's enough to make it unsafe for me to live without some sort of support. I'd estimate I have a similar level of functioning in that area as someone with a mild cognitive disability. (Roughly half of all autistic people with normal IQs have impaired adaptive function to some degree.) Even those HFAs who can live independently by definition have trouble with social interactions. It's rare that any autistic person gets to a point where their autism isn't a disadvantage for them in NT society, and even then, this success can be fragile or situational.
Another misconception is that you're either HFA or LFA. There's also a third group, medium functioning autistic, who are in between the two functioning levels. For example, an autistic person with a mild cognitive disability, or an adult or teen with high IQ whose got good verbal skills but has self-care skills like a preschooler, or someone who can talk but with a significant speech delay (eg vocabulary of a five year old at age 10) - all of those people I'd consider medium functioning. Often it seems people in this range are trotted out to say functioning labels don't work, but being in between HFA and LFA doesn't make those labels useless.
And there's also the idea that HFA people will always be HFA and LFA will always be LFA. This isn't the case either. I'm not talking about a brief regression during overload - functioning level is your baseline, not how you function under stress. But there are people who as kids looked pretty much LFA, but then got a lot better functioning as they got older. Conversely, the people with the 'autistic catatonia' phenotype often go from HFA/MFA to LFA in their teens, and some autistics with epilepsy have the same thing happen as well. Just because someone changed from one category to the other during their lifetime doesn't mean the two categories have no meaning.
Probably the most damaging misuse of functioning labels I see is to say 'HFA is part of diversity, LFA is a horrible tragedy'. Your value as a person should not depend on being able to speak or dress yourself or scoring high on an IQ test. I really think that LFA people are just as much in need of acceptance as HFA people are. And you can certainly help a person with the things they need help with, without linking those things to their value as a human being - regardless of their functioning level. (Incidentally, if you want to see a good example of acceptance across functioning levels, look at the AAC community. They are far more accepting of people with severe disabilities than most other disability communities I've seen.)
With all that, I still think functioning labels are useful. Because really, my needs are very different from someone who can't speak and needs help dressing themselves. Services designed for one group won't be very useful to the other group, or if they are, they'll be used in different ways. For example, AAC of some kind is essential (though sadly not often provided) for the majority, if not all, LFA people. For this group, AAC, if successful, will generally be their primary means of communication. In contrast, HFAs either don't need AAC or only when overloaded (or post-ictal, or someone other situation where speech is temporarily problematic). The design and requirements of an AAC device will be different depending on the use it's intended for. HFA AAC users are far more likely to be literate and to have enough computer skills to configure their own device, which changes a lot of things. They don't need the device on and powered up all of the time, so they'll run down the batteries less for a high tech device - battery life is a big deal for an LFA person who uses high tech AAC. Plus, because they only use AAC in certain limited situations, they can get away with a more limited vocabulary or even just pre-programmed phrases, which are terrible for someone who uses AAC as their primary communication. And then of course there's so many HFAs who would get no real benefit from AAC at all, because in every situation speech is easier and more effective for them.
Conversely, social skills training classes are mostly just for HFAs. They assume that the person is actually capable of doing the socially appropriate response, which is usually not the case for LFA people. They generally teach through verbal instruction, which wouldn't work well for those LFAs/MFAs who have significant receptive language issues. And often they teach how to handle situations that most LFA people are unlikely to get the chance to even try, such as a job interview in a place that isn't a sheltered workshop with a job designed specifically for them. (I'm not saying an LFA person could never have a regular job - a very skilled AAC user might get the chance - but it's very rare, and for the majority of LFAs paid work is impossible or only possible if the job is specifically designed for them.)
I could go on. There are some services that help across functioning levels, of course - sensory integration therapies, for example - but most are functioning-specific. Decisions about the person's future are also affected by functioning level.
28 Oct 2015, 9:28 am
