"High-functioning" ASD can't speak for "low-f

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What is your stance on the claim some people make regarding people with ASD who can communicate and behave in more conventional ways and yet still identify with the ASD experience making suggestions as to what someone with ASD who has less of an ability to articulate their experiences through conventional means might be experiencing?

I don't speak on behalf of anybody but myself, but when I work with clients who might be classified as "moderate" or "severe", making educated guesses based on their behaviour and my own experiences makes me able to articulate what these people *might* be experiencing. For instance, I have explained many behaviours of one of my clients to his family and to them, what I said makes a lot of sense and they are finding that they're learning a lot about him through me. I never claimed to speak on his behalf but rather offer another perspective that is, nonetheless, more native to me than to someone who is not on the spectrum.

I also don't like this distinction between "high-functioning" and "low-functioning" and I think there are many, many commonalities in experiences between these two arbitrary groups. So why this anger toward "high-functioning" people trying to contribute a voice to the conversation?

It might be best not to make assumptions about people you perceive as "low functioning". If there is anger (I haven't seen this myself) then that's probably where most of it stems from.

Secondly everyone knows there is not two distinct groups. ASD is a spectrum and there are highly intelligent people who present as "low functioning" with regard to social skills/communication. There are also plenty of good communicators who have severe social or neurological impediments.

The thing that precipitated this post is a tweet from a parent I follow. I have seen similar comments posted on the Internet in the past, with people clearly dividing those with ASD into these two groups.

I'm not sure if there's a difference between "assumptions" and "educated guesses". Reading non-verbal cues requires some degree of guessing and/or assuming someone's feelings, thoughts, and other experiences. What is disrespectful, to me, is people assuming, not confirming one's assumption by asking the person, and then acting upon that assumption.

However, people do this all the time. So perhaps making inferences from non-verbals is not right to do to begin with? Sometimes, you can't confirm your guesses about the person with the person, either, such as when I talk to a parent about the person without the person being there. For example, I once had a discussion with my client's relative about noise overload & meltdowns (I thought the meltdowns might be resulting from noise, based on experience with him and knowledge about him) and gave a suggestion of using noise-cancelling headphones for him when they go to a noisy restaurant.

I feel like the best solution is to say that everything is a guess that is worth testing out and seeing if the actions based on the guess end up benefitting the individual or not.

Many years ago I used to advise editors who loved my work and output level that they were the product of "a little dab of autism", and that they oughtn't be surprised when less exciting traits showed up too. My relationship with the world is much easier than it was when I was a child, and in general I'm rather fearsomely functional -- if oddly so -- so I do not claim to know what it is to live as an adult who struggles to communicate and put a picture of the world together, have relationships and friendships, etc. They've got a much, much harder row than I've got, and my guess is I understand their internal world no better than a sorority girl understands me.

I have no problem with lower-functioning people wanting distinctions made.

You can only speak for yourself.

That's my view.

as an LFA,woud rather have a understanding HFA help speak on behalf than a neurotypical such as a parent of an autistic person,but LFAs shoud be supported in every way possible to also speak for themselves.
most parents/relatives/outsiders have a very different view to what we want and they think if we arent miserable with ourselves and wanting a cure then we arent LFA,there is a wide belief that LFA needs curing instead of supporting,understanding, medicating where needed,specialist equipment used etc.

we need people backing us up and advocating who understand us not based on their own opinion of what they woud prefer in our situation.

Yeah, I agree with this. That's the way I thought about it, too. There are parents who obviously have the most experience with their kid than anyone else, but still don't really have an idea as to where some of their child's behaviours are coming from. I think we need a multitude of guesses coming from different perspectives and many parents are biased by what they ideally want their kid to be like.

Encouraging communication is very important, yes, and careful attention and reinforcement of the individual's attempts to communicate are crucial.

MathGirl - I disagree. Guesses are the last thing we need.

There are lots of people who need daily assistance with their routine needs. The lucky ones amongst them are surrounded by people who are able and willing to provide the obviously necessary help.

But some of us are totally isolated because we are capable of managing our own daily existence, but cannot tolerate the pressures which 'relationships' impose upon us.

The suggestion that one of these groups is HighFunctioning whilst the other is LowFunctioning is imho insulting to whichever group is to be regarded as LowFunctioning, and I don't understand how the two groups can be identified as sub-divisions of a single 'condition'.

The world of Autism is mostly defined by guesswork, under the posh name of 'professional opinion' - so far, there is no scientific consensus about any of it. I live in hope that some answers will eventually be available.

I like the sound of your approach. We (the "high-functioning", for want of a better term) are better at understanding autistic people who also have communication or learning disabilities than neurotypicals are, so are in a position to advocate for them.

However, we need to acknowledge (as you clearly do) that "low functioning" people are still people, they have desires of their own and we can't read their minds. They are the best people to advocate for themselves (and often for us too).

This.

HFAs at least can comprehend what an LFA goes through and have a better chance at articulating it to NTs. NTs have no experience whatsoever about what LFAs go through.

This about sums what I have found. Of course I'm not suggesting that mental health professionals cant help, it's just for the money we parents shovel into their bank accounts, what we get in return does not warrant what they charge.

I don't really see that as speaking for them exactly, sounds more like you observe and based on your own experiences you have an idea of what they could be going through but are unable to verbalize. That is very different then assuming you know everything that goes on in someones head even better than they do, that sort of attitude is condescending to me....hell even if one was dealing with an adult that had the maturity level of a 5 year old due to a developmental disability they shouldn't take that attitude, that individual is still and individual with individual wants and needs.

Also I don't even get the functioning scale exactly, I figured with the DSM 5....it would be a spectrum of different severities including low functioning, high functioning and anything in between. But I am a so called 'high functioning' individual with autism but I don't feel very high functioning at all considering I have significant trouble functioning.....though it is not only because of having autism.

Took my daughter to a new playground this morning. She was playing alongside two sisters. I started chatting to the mother and was surprised to find that the older sister had Aspergers and her younger sister was NT. The sisters approached my daughter and started trying to talk with her. When the Aspie girl realized my daughter did not talk she completely lost interest and ignored her (this is not the first time I introduced my daughter to Aspies where they also seemed to have no interest in interacting with my child). In contrast the NT girl made a tremendous effort to interact and engage with my daughter. I suspect it's because she has experience interacting with somebody on the spectrum all her life (even if she doesn't directly know what it's like to be autistic).

The truth is NT parents and NT siblings of autistic kids are excellent advocates because i) they know what their child or sibling is going through and ii) they know the challenges and iii) they are probably better at articulating or advocating on behalf of ASD kids than the average Aspie who is carrying social impairments themselves and have to deal with their own problems in addition to taking on somebody else's autism.

Well, I've talked about how I don't really think functioning labels are a good way to talk about autism, that instead we ought to talk about the diversity on the spectrum. But that aside...

We should not speak for anyone unless our speaking serves to amplify their voice.

We should not speak in any way that covers up, drowns out, or diminishes another person's ability to speak for themselves.

We should, however, advocate for each other. There are some things that are true for every human being--basic things, like the right to be respected, to have one's feelings and thoughts considered, to be safe, nourished, sheltered, educated, and to have opportunity for meaningful activity. Those things we can advocate for without fearing that another person does not want them, but we should always remember that not everyone wants them done the same way. One person might want very much to go to a regular classroom; another might be able to learn only in a quiet environment, perhaps at home or in a very small special ed class. What we need is universal; the best way for us to get it, is individual.

We have to make sure we don't step on people who are less skilled at speaking for themselves (by the way, that does not necessarily mean they are less independent--some of the most verbal Aspies are also so frightened of being abused for being different that they don't even know they can insist on their rights). One of the best ways to do that is to talk to, or read things written by, lots of autistic people, as many as you can find and with as many different skill sets and life experiences as you can. For those who can't communicate in words, you can read things written by parents and caretakers--always keeping in mind that this is secondhand information, of course.

This actually doesn't have much to do with "high-functioning" (subtle or invisible) versus "low-functioning" (obvious or severe) autism. It has much more to do with how good you are at advocacy in general. Those who are good at it will always face the question of exactly how much to try to "speak for" those who are not good at it, what things are appropriate to say and what things are assumptions that can silence or hurt people who aren't as good at self-advocacy.

When I talk about autism, I often feel like I have to be very careful to say, "This is my experience. Yours might be different. Your child's might be different. I'm not a magical window into autism; I'm just one person, and my autism is unique to me."

Sure, if we never tried it at all, we could avoid ever having negative effects come from our trying to stick up for people who aren't as good at doing it for themselves. But we'd be passing up all the positive benefits, too.

And, anyway, it's not like there are two distinct groups here. Most of the time, the reality is that we are all speaking for each other, whether we are obviously autistic or not, whether we use words or not. What each person does, reflects on all autistic people to some degree; when you insist on being treated with respect, that implies to the person you are talking to that all autistics should be treated with respect. We're all representatives of the autism community to everyone around us.

Very well said.

The only thing that I would add is that meaningful activity is highly individual, and we should not make any assumptions on behalf of others on what is meaningful.

I would disagree with point i) (largely based on personal experience, I know my parents have, by their own admission, little idea of "what I'm going through" and my siblings don't have the first clue - what chance does a neurotypical parent have with an autistic child who can't "pass"?), but point iii) is a good one.

In the example you gave, I'd suggest that maybe the autistic sister was simply less interested in socialising outright than the NT sister. Of course, that could be seen as another advantage for neurotypicals advocating on behalf of autistic people. I still think, all else being equal, an autistic advocate is better than a neurotypical one.