High Functioning

That's the dilemma I have faced a little since diagnosis, I go round in a circle of wanting to tell people but then not doing as I'm blowing my cover after all the years of hiding and fearing ridicule or being treated differently. 

I put it down to asthma diagnosis age 10 ISH. I was told I should get tested, didn't want to, felt I'd stand out and get grief like other kids that were different for whatever reason. Ended up ill so got diagnosed, as soon as I had I felt great, the inhaler helped if I did anything that made me tight chested. Then I went to school and told them and was instantly barred from doing sport days.

Since then as my autism traits became more obvious to me and more impacting, I knew the only thing to do was act normal and fit in. That was 40 years ago and I still feel that same fear.

I'm working through it. The stress and anxiety in social and work situations is hard to bear, but I still feel at times I'd rather ensure it and not risk what might happen if I ask for adjustments. That coupled with not wanting to feel like I didn't do as much as everyone else has to.

Autisician said:

I can't help find some irony in the fact that I get annoyed that when I tell people they don't think I look or act it, I should find it a confirmation that I'm masking and succeeding to hide it.

Hmm, so you act like a normal person and get upset when people tell you you have succeded?

I can't help find some irony in the fact that I get annoyed that when I tell people they don't think I look or act it, I should find it a confirmation that I'm masking and succeeding to hide it.

I want everyone to know and understand how it makes me feel but I don't want to tell anyone or have them treat me differently. I Think I'm an oxymoron! ( I know there's a joke in there....)

And being able to hide an enormous amount of distress and anxiety in a social setting is definitely not marvel level super powers , as you say!!

I would of thought that when in battle hygene would be one of the first things to go, I can't see an enemy agreeing to a break in hostilities so as we can all go and have a shower, although we might need one as I suspect that being in battle gives a whoie new meaning to brown trouser time lol.

Some Celtic warriors were said to go naked into battle to show thier bravery and how little they care about being wounded or thought they were to good to get wounded.

I'm fairly sure Archimedes was autistic, the more I learn about his life the more apparent it seems. I also think Pliny was too.

see this is what would happen if we had more autistic generals. Scruffy comanders with poor hygeen and occasional nudity ... but we do get to fry the enermy with deathrays.

I'm reminded of archemedies. Who's family had to force him to take baths and who would doodle maths in the ashes from the fire. running out naked in the street when he had a good idea. Comander of the city's defence force but got his head choped off because a roman soldior thought he looked too scruffy to be important and he told said soldior to bog off because he hadn't finished his maths problem.

I agree it’s not simple atall I’ve heard of people who can compose intelligent posts on forums and have an excellent  grasp of the English language yet have no self care skills and cam’t live independently. 

In practice labeling myself as high functioning generally means difrent things to difrent people.

• most people hear high functioning and think 'he doesn't need someone to change his nappy'
• a few think 'supper genious' but this is very much the minority
• Autistic people and people who work with autistic people hear 'high functioning' and know it means i have average / above average inteligence but other wise might struggel with a lot of non inteligence related autistic issues.

For medical proffesionals their understanding of 'high functioning' can be anywhere between those 2 perspectives.

Looking at the different levels, of which previously I was not aware of I don't think I fit any of the criteria for support needs.

I was born decades before there were terms like 'gifted and disabled'/'2e'. There was no help for people like me back then. It took over 40 years as a psych patient  for it to be seen that I had genuine difficulties, and wasn't just a passive aggressive obstructionist with a huge character defect. Years in which I was seen in a bad light because I deviated from the uniformity of performance that was expected/demanded. Years when criticism was seen as a suitable proxy for much needed help and support.

It took moving to be near my  daughter and her liaising with mental health services, before I moved, for damaging inaccuracies to be kicked into the long grass. By then,I was 60, so much damage had been done that realistically was irreversible. I don't expect my mental health team to be able to make everything as it could/should've been. That would be unfair. I'm just glad that in the nearly 7 years I've been here I've been treated with decency and respect. No animosity. No exchange of angry words. A huge difference to how things were where I lived before.

I get great and much appreciated help and support from my 'chosen family', as I call them.Unfortunately not all health professionals where I live now are of the same quality as my mental health team. I had 7 weeks with a broken femur before an x ray revealed it. That was because the immense pain was dismissed as 'psychological' by paramedics and a GP.  Why? Because it had to be 'psychological' due to my having  autism and schizoaffective diagnoses. 29 months after a hip replacement I still get pain after a bad night's sleep,or if I'm upright-moving or static for too long .I'll never be able to go outside for a walk on my own again whether unaided or using a stroller. It's not worth the risk given the premature osteoporosis that I have.

What all that boils down to is that I'm mixed functioning . I  find it easier to do a high range IQ test than to coordinate my brain to keep my flat clean and tidy, or other daily living tasks that most take in their stride.

Absolutely, same here. 

As far as I am aware I don't mask. Not consciously,certainly. If you can mask you're more likely to be seen as 'socially acceptable' in  comparison to someone like myself . From very many posts I've read though that 'social acceptability ' can come at a heavy price.

The more I read posts here the more I feel alienated and out of sync. Perhaps it's because of the additional schizoaffective diagnosis. I'm not severely disabled re the autism, not level 3. On the other hand I'm not a high achieving, in spite of the autism, person. I'm somewhere in that vast centre that, comparatively speaking, tends to get ignored.  

I seldom see the term 'adaptive functioning' mentioned here. Adaptive functioning often being at a level significantly lower than would reasonably  be expected given how intelligent a person is. That's a major area where a person  can be intellectually high functioning, and yet still need a substantial degree of support.

You've just almost described me there too! 

I do find it frustrating that one of our big issues as autistic people (fatigue from masking) goes unacknowledged, but I guess that's what masking is, trying to hide ourselves in the neuro typical crowd, so maybe the better we are at it,  the less credit. A sad Irony in a way.

I’ve personally heard remarks from other people of, mildly or slightly autistic, there is a perception that “high functioning” autistic people require little or no support. This is why so many of us end up in burnout, as someone else stated, we are more high masking, in a social setting my battery is most probably exhausting at twice the rate of a neurotypical person, this isn’t a them and us rant either. For me to mask with extroverts is like a torture. ( have I said the right thing, did I laugh or remember to smile?) I am married, work and have adult children, from the outside I look normal and would be classed as “high functioning.” Some days I can’t get out of bed and dress myself yet the world only sees the neurotypical husband and dad. Some days I’m none verbal, am I still highly functional? The DSM-5 manual states, level 1 autism - requires support.

Several people have answered your first question, but there’s an interesting discussion to be had to answer your later 3. As others have said, functioning is used to convey perceived support needs- hence why a lot of people use high/low support needs and high/low masking. As they focus on ‘ability to do stuff’ these terms lump several important things in with each other that are much more nuanced in reality:

• Communication - this is a big ‘NT’ helping/ASD hindering one (imo) and a lot of people wrongly equate functioning with speaking ability. This means people who can communicate perfectly well without producing the correct sequence of audible words from their mouth are assumed to lack capacity (a common problem faced by deaf/HoH people as well apparently), and people who can speak well may have their struggles overlooked.
• Ability to self-regulate and the ‘visibility’ of this regulation - again someone who struggles to self-regulate/sooth or displays obvious stimming behaviour may be considered ‘lower functioning’ regardless of the individual’s ability to actually, you know, function. This also contributes to the under-diagnosis of women/perceiving women with ASD as needing less support because they are less likely to perform large & visible regulatory behaviours (stims).
• Coping skills- similar to the previous one with internal/external regulation, but both support & functioning terms push the assumption that someone who is HF/LSN is coping well, and fails to account for the severe mental & physical health consequences they may be facing as a result
• Changing ability- this is a big reason I see cited against functioning labels, but also against support needs. My ability to ‘function’/need for support is very different when major external regulatory systems (e.g. school routine) are removed.  
• Capacity - this is a big one (more here: https://www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/mental-capacity-act/). Using functioning as an equivalent for capacity is problematic and can lead to assumptions of incompetence that are genuinely harmful. 
  
  

I was thinking about this though, as the way I answered your questions has changed.
Originally I was thinking some form of label could be useful for ‘managing expectations’ (e.g. at a Drs appointment) but then I realised - if HSN is always assumed, accommodations for that are unlikely to be harmful for someone with LSN and can be removed. The main concern would be if LSN were assumed and someone with HSN showed up- but then, it would be more appropriate to get details about what sort of accommodations would be suitable. Ultimately it comes down to a resource allocation problem, like everything else in life- assuming support is needed is a safer approach that removes the need for functioning labels, but that requires resources that are already stretched desperately thin.

To compare it to similar situations- my friend and I can both say we have ‘anxiety’, there is no need to specify that one of us has GAD and the other has PTSD- focussing on the symptom enables us to receive better support.

While I appreciate wanting to label things, it can also further drive us apart and miss out on meaningful contributions. For example, someone with ‘high support needs’ Im helping (as part of a group of helpers) could express that the wind is distressing them better than I (‘low support needs’) can (as I’m trying so hard to cope it is difficult to pinpoint what is actually giving you the issue), but then I might be better able to explain why the wind is distressing to the other people involved in the support (e.g., it’s making a whistling noise through that one specific place on the wall and I’ve been pushing myself to try and ignore it)—- so we can then go outside for the rest of our session and everyone is happy (which might not have been an expected solution from just “the wind is hurting”). By separating people into functioning boxes it is easy to disregard the shared experiences of people on the spectrum - I hope that makes sense?

I don't like this idea of autistic people having some kind of super power either, I find that just as disabling, as having next to no power, to me that implies comic book levels of defiance of the law of science etc. I have a good memory, I have trained my memory, its something that has kept me sane over the years when people have tried to twist, distort and deny things I know have happened. This is not a super power, its a learnt ability. I can cook well and have an excellent palet for tastes, smells and textures, so do many others. I think we all have things were good or very good at.

I think a lot of people get upset whent they find out I'm autustic, I'm often met with disbelief, because I look and act normal, male autists can be quite dismissive of me as a female autist.

What Amerantin said, and because I think that it dismisses our ability not to cope, 'but you're usually such a strong person' being one example thats been said to me more than once. I think it's divisive because it ranks us with a top and a bottom set of characteristics, and it's very difficult to change rank, such ranking sets limits and boundaries on what we are and are not allowed to "do". And I do believe it to be a case of being allowed, high functioning people maybe made to feel like they've failed if they have a meltdown or just become exhausted, low functioning people maybe led to believe they can never achieve anything and so are never given the chance to do so.

The NT world seems to want everyone to be part of a tribe that they can exert some control over, divide and conquer, this is how I feel that the term high functioning works. 'Look at them over there, do you want to be like them? You're not like them, you're better than that.' With the implication that we should pity others, that there will be no pity for us should we slide into meltdown and drop our masks. I see it as an attemt to divide us from our neurokin.

Being perceived as high functioning means receiving no help or support. I desperately needed that support in my teens and twenties and never got it, and my life has never recovered. But people see me going to work and paying my bills and don’t realise what’s happened.

Hi Catwomen 

Personally I don’t find the term offensive to me but I can see why some individuals would. I suppose a good all round definition would be ASC as we all are very different and have very different needs, and yes if you are classed as HFA there is so much that is not visible. 
Unfortunately HFA to a lot of the NT community means you require little to no help which for me simply isn’t true. I still mask and know only too well how I can go unnoticed to the untrained eye (why would they think anything else in my case).

I think I have just realised that the term HFA is unhelpful though, reason why is in my case I mask heavily therefore how can I expect a NT to understand me at all unless I start to be my authentic self. 

I can’t wait until the day I make that decision and discover for myself who I am. 

This is all still very new for me but it’s a very interesting thread by the way!