Please GET RID of functioning labels!!!

Labels are only useful if both sides in a conversation have the same concept of what the label signifies. It seems to me that

a) ordinary people have very little experience of dealing with people with autism or Asperger's labels. If I tell someone that I have Aspergers then usually they have no idea what it means. If I say autism then they get even more confused.

b) people with ASD have such different experience and are differently affected by the problem that we struggle to see how other people with the problem are different or the same as us.

c) because we have difficulty imagining what goes on in other people's heads we can't even see what we look like from outside and we struggle to imagine what it is like to be a different ASD individual

I think that the best thing is not to expect too much from someone if we tell them that we are affected by this mysterious condition. The label is just a start of a conversation.

I said that, didn't I? 'I'll be honest' Duh, as if I couldn't be *egg on face*

I get that, but can I ask you to consider that in using a term that you hate others to use, you're actually letting them to use it? Just a thought.

I'll be honest and say that I've struggled with this too, particularly after the recent thread on here where we discussed the so-called 'survey' that the NAS carried out about what people want to call the condition, but used only a minor sampling of AS people compared to NTs. Are you aware of it?

I actually coined the terms Homo Sapiens versus Homo Aspie as I found that it helped me not only to define myself but also to distance myself from , well, Homo Sapiens. I don't know what my behaviour is like, but I hope it's better than theirs! However, I have to accept that in doing so, I've added confusion to the issue rather than helping to clear some. Unintended consequences, we're good at those. Oops

I was only diagnosed earleir this year so of course I've struggled with all sorts of things, and one of the main ones is with the variety of names that AS people use to describe themselves. I don't like 'functionality' descriptors, so hate terms like 'high' 'low' 'mild' etc - I think you get that too? As far as I am concerned, all AS people have the same things in common, it's what defines us as AS, but some can achieve better interaction with the NT world than others. We are not NT, we are AS, we're different, that's all.

I started by calling myself Aspie on here because I thought that other AS people found it easy to understand, but then, having discovered that there's a whole issue around this, found that I was getting more and more confused by the variety of descriptors. I just did the same as everyone else and decided on names that I am comfortable with.

So I stopped using Aspie because people attach inferences to it like 'high function' etc, none of which I can agree with because it is so patronising and misleading. I don't even know how 'high' and 'low' are appropriate terms to use when basically we all have the same problems but vary in the things we can deal with and the ways we find to deal with them. If you consider, you can apply this rule to Homo Sapiens too, but you'll never hear them use terms like 'high' or 'low' function about themselves or each other. If they did (they won't) then all they'd be doing is describing people's 'adequacy' rather than their 'condition'.

Does that make any sense?

Instead of saying "person with Asperger's," I use the term Aspergerian because I think it is less of a mouthful. 

Hi Karajan.

Aspergian, is that a new birth sign? LOL!

I'm with you all the way, a person is AS or they aren't. I get quite aggressive when such terms are used, because it causes the same reaction in me as it does in you. I don't like the inferences, I prefer to believe that we are all in it together.

I'm type 1 ASD because I'm an AS person who loosely fits the critieria for type 1. This is, for me, less about 'functionality' and more about describing the disfunctionality attached to the levels of difficulty we have in dealing with AS whilst trying to share the NT world with them - the lunatics are running the asylum, and for sure, an ignorant NT will always find a way to make things worse (stipulating that there are times when, for us, no-one can do right for doing wrong!) and then blame us for being made worse - chicken and egg...

And, anybody who can write like you do is far from dumb. I know exactly what you mean though...

I experience more anguish when I hear the term Asperger's because, at first sight, it sounds like a completely different disorder. With the term High Functioning Autism, you can get the message right away that autism has different levels. I hate the term Asperger's so much that every time someone calls me an Aspergerian, I start losing my *** and I assure him/her that I have AUTISM and not assburgers.

I'm somewhat ****** up in the head anyway. I mean, I hate the idea of spending time with family; I'm incredibly selfish; I want to be alone all the time; I'm horny all the time; and I'm dumb as a bag of rocks. All I pretty much do is go on the Internet and play video games, and I have no life outside of that which is sad when I think about it, but I love knowing that every day might be the same. I don't have to worry about what torturous change could happen to me because I am free, and thus brings me happiness.

Personally I'm quite happy with HFA as a label. I would much rather be HFA than LFA. To me it means that I function quite well considering that I have ASD. It doesn't mean that I'm a high functioning person overall. If you have HFA and a degree then it means that you are in the top half of people with ASD and that you are also in the top 50% of the general population if 50% of people have degrees and 50% don't.

I agree Hope, we need to define a better term. It's just too misleading.

When I listen to you folks, i'm always in awe. You seem to have such a good handle on it all. Personally, I have huge gaps in my knowledge, both about Autism and life, and even now I still very much feel i'm only just scratching the surface of it all.

I'm pretty sure I'm not thick and yet the obvious (to others) often alludes me. Interpretation is a difficult issue for me, I've realized recently. Someone asked me If my high-functioning child had behavioural problems once, and i replied no. But by behavioural, I assumed they meant violent, what they were actually refering to was the meltdowns, which for him are more a form of terror than violence. This clearly gave an inaccurate picture.

In my own case, I was asked recently about my own special interest. (It's cooking) yet almost on a daily basis i forget to eat, when immersed in my daily activities of the care of my boys. (Even though i manage to feed them!)

It's the transference of skills and info, that's hard for me. Yet I would be classed by many as high functioning and very intellegent by most.

The anxiety has to be one of the most difficult areas. Worrying about the unlikely or sernarios that are probably never likely to occur. All so draining for me.

I had to be curt with an old aqautence recently. She just didn't get that I was overwhelmed and couldn't take in what she was saying. How do you get others to 'walk a mile in your shoes?'

It's the constant bending to others demands, that often pushes me too far. Some have me wiped out for days.

Yet I find myself at the mercy of others judgement and advice, in order to get by in life. On some occassions running for cover from things I don't understand or have no reason to be fearfful of and all because I pick up that others are fearful or trust their judgement way more than my own.

For once, I'd like to feel supported. I'd like to be heard, understood and reassured by someone who didn't have an ulterior motive and who would guide me through my unfounded fears, without judgement. Respecting me, for my and my childrens condition, without agenda, doubt, disbelief or cynicism.

The minimising of ones ability to manage the things that others find easy is so damaging I find.

What the last year or so has taught me, is that I need to believe in myself a litlle more, thrust that i will get it wrong on occassion, trust that I will get it right even more, inform those who are ignorant instead of staying silent, but if they still don't get it, then walk away and leave them in their ignorance.

As I get older in life and each trauma takes longer for me to recover from, I've finally realized that I need to conserve my energy for myself and only expend efforts on those who really want to understand.

Hope my rant wasn't too deep. Wish you well Hope.

classic codger - your Homo Sapiens/Homo Aspie comparison made me laugh

Good points longman. With regard to metaphors, I have learnt some of the more obvious ones. My problem, as you allude, is with more subtle irony and sarcasm, and I can still be flummoxed if I hear a metaphor that is not often used. Some NTs, though, assume  that I must find all metaphor difficult, and this is patronising. I am not a child, I am an adult, and I do have the capacity to learn! I am no longer fooled by 'it's raining cats and dogs' because I have long learnt its meaning. Autism is developmental and lifelong, and the nature of development is change - we are not stuck in a time-warp, we can learn and develop. Therefore, the triad as applied to children might look different in an adult who has learned to compensate.

Sorry about the guff. Something to do with cutting and pasting via a Word document. Apologies!

Good rant, Hope, nailed it again, Longman! Totally agree with you both.

I think that this is yet another example of Homo Sapiens' reasoning about Homo Aspie. First, they assume that an ASD is a 'poor cripple' and then think they're great when they say 'but you're high functioning'. It's offensive.

Grrr *^^%!!!

I completely agree with Hope, and for the same reasons, so my answer to her concluding question is YES, ME TOO.

Homo Sapiens doesn't seem to have the same brain function as Homo Aspie. I've defined these terms for myself because I had to, I can't get my head round being an ASD Homo Sapiens when they work differently and, to my mind, much less efficiently, thoughtfully, inclusively, globally, logically or sanely as me. I don't feel like a version of H Sapiens, I feel like an H Aspie

All of my past troubles (and many of my present ones) are because of the difficulty I have with living and functioning in their world. I have compared it to the problems they must have had when H Sapiens first appeared in the world of H Erectus. Are we the next evolution of humanity? Does this postulation and question make sense to anyone?

And they call us weird!

High functioning, along with mild autism and other epithets, assume that autism is on a continuously and uniformly grading 'spectrum'.

So if you seem to be coping well you cannot have anything wrong with you.

But autism is not a standard persona, even if you can read about yourself in books - people have different degrees of problems with different aspects. The very nature of the diagnoses is having SOME of the traits.

Two aspects seem common to all, wherever they are on the 'spectrum' (and OK this is my theory not one evidently held by NAS): sensory issues and poor social interfacing.

Even quite conspicuously able individuals have sensory issues, and have trouble fitting in socially. Trouble is, these are only marginally represented in the Triad of Impairments - because from a diagnostic perspective they can be confused with other conditions. It is not a reason for ignoring them.

I also think there are a lot of people out there failing to get a diagnosis despite having real sensory problems, and real difficulties socialising.

With social interaction the manifestations are interdependent and determined by both not reading and not generating good non-verbal communication. But apparently you need two of 'impaired non-verbal', 'failure to develop peer relations' , 'lack of spontaneous seeking to share enjoyment etc'  and lack of social and emotional reciprocity' (DSMV IV).

How do they measure these accurately? How does someone determoine you are not making good eye contact when looking at people's mouths looks as if? Facial expression gets stiffer and less informative as they get older but it doesn't overturn non-verbal communication. Many people on the spectrum want to make friends, but cannot - is that the same as lack of sponteneity.

Does everyone with autism really have a mind block understanding "it is raining cats and dogs"? Many people may have to give more thought to it than an NT but the issue is with more subtle metaphors and double-meanings and not noticing give away facial expressions.

All aspects of autism diagnosis are qualitative, observed measures. So how can you have a category called "high functioning". It cannot be measured on a dial. It is a judgement of a number of qualitative parameters.

Mostly by people who don't seem to have much understanding of autism......