People misinterpret functioning labels

Post Reply New Topic

^ ^^That's fine if you want to simplistically divide it into high or low functioning. With anyone above the level of 'Jonathan' being seen as 'high functioning' . However it's an inaccurate picture of how things really are .

Last edited by firemonkey on 02 Aug 2020, 2:50 pm, edited 1 time in total.

What you are said is consistent with DSM 4. On the other hand, in DSM 5, they do have labels of severity: Level 1 is high functioning, Level 2 is intermediate functioning and Level 3 is low functioniong. These three levels don't refer to IQ. Although I suspect that there probably would be a statistical correlation (as in, someone in Level 3 would either have a very low IQ or be a savant of some type). But thats just my guess, I would be curious to see if thats true or not.

By the way, in Russia they have different classification. They have four levels rather than 3 and, interestingly enough, it goes in the opposite order: Level 1 would be the most severe and Level 4 the least severe. I talked to Russian psychologist, and they summarized it to me in this way:

Level 1: Jonathan (see my previous post)
Level 2: Rainman
Level 3: People with Asperger (including myself)
Level 4: People with HFA

I asked her how can people with HFA be considered less affected than people with Asperger if it is supposed to be the other way around. She told me that the area in which people with Asperger are more affected is that their special interests are more pronounced than the ones of people with HFA. But in terms of intellectual development, people with HFA (or, equivalently, Level 4) might have more delays than people with Asperger (or, equivalently, Level 3).

Here is the full text that describes it (it is in Russian, but perhaps you can use google translate): https://alldef.ru/ru/articles/almanah-1 ... go-autizma

I was talking about the use of IQ in determining someone's severity level. The DSM-5 uses ID as a specifier not a severity level.

I have ASD with social communication impairment Level 2, restricted, repetitive behaviors impairment Level 2 without intellectual impairment and basic communication.

I am considered to have moderate classic autism.

I wasn't aware of the "functioning labels" until I began using WP and seeing discussions about them when I joined some support groups on Facebook. I still don't completely understand them, to be honest, but I'm not an expert by any means. I feel like there are pros and cons to them in my personal opinion. For example, they can be helpful for someone to use when describing themselves to someone new or for schoolchildren so that the new person or teacher can possibly better understand them and how they are affected by their ASD and provide proper assistance if needed to help them thrive. However, the downside is that there is a lot of stuff not taken into account when giving one a "level". Some Autistics can do certain things (like maintaining relationships with their peers and romantic ones even) but maybe struggle to drive a car or live alone. I feel personally too like the levels might discount the things that one labeled "level 3" is capable of.

My cousin would most likely under the DSM-5 criteria be labeled "level 3" and I would be labeled "level 1" most likely (even though I don't receive any supports aside from a weekly therapy appointment which is more for helping me cope with my anxiety and depression and a psychiatrist that prescribes my medications). My cousin lives in a group home that is on a farm and he is doing very well and he gets to do things like feed the animals and help take care of them. He can read and write and even play the trumpet. I see it as just everybody has different needs and while I understand the point of functioning labels, I don't think they should be the only way to define an autistic person. Every individual is unique

This all just comes from my own personal thoughts, things I've noticed from my own life experiences, and the stuff I have read in books and on the internet. If I'm incorrect about something, please correct me as I want to learn as much accurate information as possible.

The problem with functioning labels is when someone says they are HF, people will use that as a weapon to not help them.

But however, if someone is HF, don't expect me to buy they don't understand assault. I say if they can be out in the real world, make adult decisions, be by themselves without any super vision, then they can be accountable for their actions. If they can't be accountable, then they need a care taker 24/7 and never be left alone ever since they are that low functioning if they can't be held accountable.

Something my therapist told me in high school when I was trying to use autism as an excuse to not control my anxiety and my emotions and not keeping them in check and when I wanted everything to be my way and have everything be my rules and he told me if I want to be an adult in the real world, I need to be responsible for my actions or I can't be in the real world. Bingo, that changed my perspective.

For those autistic kids where everyone has to live under their rules to avoid violence and abuse and violent meltdowns, those are the ones who will be in group homes or always need 24/7 care takers. This is not me. I can't expect human rights if this is me.

That sounds really interesting. I didn't know there are group homes on the farm. Was it an original idea of one person who organized it, or is it done elsewhere? When your cousin feeds animals, does he realize the whole content of what he is doing? How did they explain it to him? And what makes you think he would be Level 3?

I kinda miss the context of why you talk about violence. I guess I didn't read a lot of your other posts.

What does "ID" stand for? And what is the difference between "specifier" and "severity level"?



Are you saying that others on Level 2 also lack intellectual impairment or are you saying its just you? If they were to be able to give non-integer numbers to the levels, would you say you would be 1.7 as opposed to 2.3?

There used to be lot of posts here by autistic people defending violent Autistic people and blaming it on NTs. But lot of them have seemed to have left this forum. My motto is if you are high functioning, then you should be held accountable for your actions. Plus in the news articles, parents would claim their kid is high functioning but then back pedal saying "she doesn't understand assault. She can't get suspended."

I don't know what you mean by "can't be trusted," but I doubt that we are talking about the same skill of being able to go out alone. Anyways, like Joe90 posted, these functioning labels are not about specific skills, so you can have minor difficulties with going out alone and still be high-functioning. If there's a whole slew of basic things you cannot do, then the high-functioning label might be inappropriate for you.


Well then those people with the inappropriate expectations are misunderstanding functioning labels as well. To me it doesn't make sense to reject terms if the actual problem is people misusing the terms.

And anyways, there are people who have said they dislike functioning labels for the reason I mentioned in the OP. So problems with expectations may be one reason people reject functioning labels, but I don't think it's the only reason.

I think it entirely depends on the circumstances and how the situation occurred because there are a few people with high intellect but may get meltdowns or mental issues which can be out of their direct control. The reason why I say this is... Well. Take meltdowns as an example. Some who experience them may have a degree of control in that they can direct the situation where if they do lash out, it will be towards an object rather then a person. Others seem to have no control. Now why I mention this in this way is I have noticed how embarrissed and ashamed some have been immediately after having a meltdown. Now to me this indicates that they were somewhat powerless to prevent themselves from doing what they did. I maybe on the wrong tangent here to your statement so I apologize if I am.
It is just that in my mind, just because someone is classed as intelligent and high functioning, does not mean that low functioning are not in control and high functioning are in control. I believe it can vary from individual to individual.

This is why it’s so important that parents don’t baby their autistic children. If a child is taught to self manage their meltdowns via taking themselves off to a quiet place, letting off steam via a punching bag, screaming into a pillow etc, this ensures they have a better chance of managing in society. Those who never learn “self control” tend to be the ones who wind up in clinical settings or in trouble with the law. Parents are doing their autistic children a grave dis-service if they don’t do their utmost to ensure their children learn about consequences for their actions, and explain to them that they will be held accountable for their actions in society. Those that can’t manage their own behaviour as adults, need to be in the care of responsible adults who can maintain limits, as there are already more than enough asd adults in prisons.

Correct.

There's quite a bit of motor skill things i struggle to do. And what i mean by not being able to go out of the house alone is just that. I don't function well enough to reasonably be able to go out of the house alone. I'm not socially adept enough to leave the house alone and deal with anything that might come up. I can barely talk to strangers. If i got into any trouble, I'd end up making things worse. So Going out alone not really realistic. Not to much point in me going out alone anyway.

On a tangent & Not addressed specifically to Jiheisho.

I've noticed how members of a population that, for whatever reason, are not part of the mainstream will frequently make statements, such as this above, toward those who don't belong to their particular population.

I've heard blind people say it about sighted people, deaf people say it about hearing people, people with phobias say it about people who don't, and etc. It seems to be rather common and fairly universal. Find any group of people who don't feel at home among the mainstream population and, it seems, the above sentiments will be stated.

Here's my question: Why is it being said?

I'm not asking if it's justified. I'm asking what difference does it make if the mainstream population has any given experience (which they can't because that would remove them from the mainstream) or whether or not they can relate (which, again, would remove them from the mainstream)?

I'm not blind. I can hear just fine. So why would it matter to a blind person or a deaf person that I don't have the experience of blindness or deafness? Why would I need to relate on that level in order to be able to adjust my expectations of them and begin to make changes to help them not be so challenged in the mainstream world?

[I deliberately switched to referring to blind/deaf people so that we could consider the question from a less personal perspective.]

Thank you for considering this question.

How can you accommodate someone's challenges if you don't understand what those challenges are? Would you hire a blind person as a proofreader and then complain it is that persons fault he/she cannot do that job when it is so easy for you?