High functioning / ‘mild’ autism - can we have another term

I can definitely relate to most of your comments above. I wasn't diagnosed until a couple of years ago at age 55 & really wish that it had been identified earlier.

I used to think that I couldn't be on the Spectrum because I am 'High Functioning', can read body language quite well, very much enjoy socialising & generally pass for normal most of the time. As with your comment above though, it doesn't take long for people to notice that I am a bit strange compared to them.

Had I known when I was much younger, I wouldn't have wasted most of my life trying to create new versions of myself in order to belong within given social groups, but still always feeling like an outsider. Nowadays, I quite happily tell people & enjoy challenging their preconceptions about people on the Spectrum. I think they are generally happier to accept a bit of strangeness when they have an explanation. Obviously there will always be some people who cling to their negative stereotypes, but I am too old to care about their opinions any more.

Even two years after my diagnosis though, I am still trying to understand exactly what it means for me. Probably because I spent so much of my life trying to be a chameleon of sorts, I have a very confused sense of self. It's impossible for me to unpick which parts of my identity are due to being on the Spectrum & which parts are just supposed to be 'me',  whatever that is!

Good reply  ~ I love that - give yourself permission to accept the diagnosis ~ thank you  

Hi

i really agree with you and I’m very much in the same boat. I paid for a private assessment and received a diagnosis 3 years ago at the age of 45. Despite this, I still feel the same as you describe. People try to suggest that I’m not really autistic as though it will cheer me up. I’m comfortable with the diagnosis but frustrated that others don’t accept it as they can’t see it.  if the symptoms of ASD in high-functioning women fit you, and you find comfort/explanation in them- give yourself permission to accept them and have the confidence to try and help others understand why it is important to you. You are not a fraud, I’m sure you are an extremely capable, intelligent person - if you feel like you’re autistic then you probably are! 

Best wishes

Autism is a word for the condition that affects us.  It can affect us in many different ways.  Whatever word was used for this condition, it would be used derogatarily and to judge us.  I don't have any problem with the words autistic or autism or the fact that there are different ways we are affected.

I have a greater problem with the terms 'mild', 'severe', 'slight' or 'major' autism.  These tend to make others think that we either don't need any help at all so our needs are dismissed, or that we have no abilities so our skills aren't recognised.  I don't feel that I am 'slightly' affected - sometimes I suffer bouts of deep depression and anxiety, I can feel that I want to escape the world and others find me impossible to be with or console.  I can misunderstand what others are saying, respond in supposedly inappropriate ways and retreat to a world where no one else is welcome.  Yet I am 'high functioning' and appear 'normal' to many others on initial acquaintance but soon appear as 'strange' to them.

A diagnosis goes a long way to helping explain to oneself the reasons for one's behaviour.  Being diagnosed left me with a feeling of relief on one hand, but also a feeling of the missed opportunities I had in my younger life and a feeling of 'what might have been'.  But I am glad I had the diagnosis because of all the things it helps explain.

I couldn't give a s**t if someone wants to judge me, it doesn't bother me and says more about them than me. I know we're all equal and I don't need anybody to tell me so or to treat me as equal. Most people don't see themselves as equal, therefore, they can't treat other people as equal, which of course includes me. But that doesn't mean anything other than they don't think they're equal. But it doesn't mean they're not. Everybody faces challenges, every day, and not just autistic people. But autistic people are luckier than most because we are not naturally affected by social norms etc, I know I definitely am not and never have been, so therefore, we already have a head start in the race for freedom. 

If you don't believe that one person is better than another, then it doesn't matter what terminology you use, because it's the intention behind it that carries most weight. No spoken language is ever perfect but it serves a purpose.

In theory I like the idea of another term, but the truth is the reason we want that is because of stigma, socially and maybe personally too. When/if that stigma goes then it'll be less important that we are in a group of folks some of whom struggle with life more than others. 

Saying that isn't there that phrase, Neuro typical, what's the opposite of that?  

Thanks Andrew, I will look out the book.  I'm relatively new to the forum but I've been doing my own research into ASD  (since it was suggested I had Asperger's, a now defunct definition), many web sites and books and many not applicable to how I present.. So, I welcome any recommendations.

You are making some really good points here. The other issue for me is that I don't want to use any descriptions that imply a value judgement i.e. that some people are 'better' than others. I believe that we are all of equal value - regardless of how many challenges we face, how we feel or how others perceive us. 

You haven’t only been autistic for a fortnight, you’ve been autistic all your life, but you’ve recently become aware of it. 

I’m 15 months post diagnosis and getting a good grip on it but it’s been very up and down indeed. I feel like I’m beginning to integrate all I’ve learned and I’ve got specialist autism support now. 

To me, high and low functioning is based on the idea that there’s some level of functioning by which we can all measure ourselves by. And there simply isn’t. So to me, it’s obsolete.

What would you call me? High intelligence, highly self aware, good communicator, earns good money, travels the world, but can’t (yet) do the basics of everyday living such as eating, washing and dressing etc? And not sticking to anything for more than 5 minutes! Lol! 

I can relate to what you are saying. It is difficult to a) define oneself and b) explain oneself to others.

I have been doing a lot of reading recently about the history of autism (by the way I have found one book to be really helpful and fascinating on this subject - 'Neurotribes' by Steve Silberman) and it shows that for decades professionals and individuals have tried to find the right terms to include or exclude various aspects of autism. My own view is that health professionals need a lot more education about what autism is. If they could be encouraged to move away from many of the different terms in use, then they could see that autism is a spectrum (or perhaps even a syndrome?) with many different facets. In the same way that all women or all men are not the same, there is a huge variance in how autistic people feel and display themselves to others.

I hope this helps. I just feel that more definitions and sub-categories might be counterproductive - whilst if 'autism' is embraced as a syndrome that has multiple dimensions, we can actually help each other a lot more by focusing on what we have in common. There is a huge exercise needed to educate the wider population too so the more we talk about how we feel to others, the more we are helping to raise awareness. 

I've only been autistic for a fortnight.

I wonder if 'mild' means 'not that noticeable to others.'

My life has been, and still is, a disaster area, but most people would think I was just a bit quirky.

However, I'm mild compared with people who can't care for themselves at all.

Two ways of looking at it, I suppose.

You can call it what you want but it doesn’t change anything and that’s what we’re after, to change the way we interact with the world so we can live a peaceful, happy, joyful, fulfilling life. And you can give a person all the help in the world, but if they’re not ready for it, it will be pretty darn useless. And those who are ready for help, will get it, regardless of their situation, because they won’t stop until they do get it. It took me 51 years but I am now, very gratefully, getting the specialist support I need. 

And we all worry and stress like hell over our assessment/diagnosis, there seems to be no way around that, but to maybe identify with others going through the same thing. At least, that’s what helped me ~ binge watching autistic youtubers and reading stories and books and post diagnosis, when I was suicidal, I found this site, which has been a blessing ever since. And most of us stress about our diagnosis even after we get it, for a while anyway. I’m 15 months post diagnosis and haven’t fully processed the whole thing yet, but I’m well on my way. I’m fact, I’d probably say, I’m more integrating what I’ve learned now, etc. 

I do dislike the terms high and low functioning autism though as they really don’t mean anything much at all. They’re a bit silly really, but they can, sort of, come in handy for ease of communication sometimes. But I don’t tend to use them. 

I understand liking detail and definition. So do I. But you can have a non verbal person with low intelligence and a non verbal person with high intelligence. You can have a person that seems very high functioning who when things get too much, will lash out. It would be incredibly difficult to define in what area these people fit. 

When you say causes. Do you mean the causes of autism? Or the causes of those behaviours? If you mean the behaviours then again it is so individual. Everyone has different triggers. If you mean the cause of autism. They haven't figured that out yet. There has been a lot of research though.

Women often present differently. But there are females with classic autism as well. Some of the reasons that women present differently are to do with masking though.

You will always hear people saying but I do that. To have autism you need to have difficulties in 4 areas- social, communication, sensory and rigidity of thought. So someone saying they have 1 or 2 traits doesn't make them autistic. You will also find that people with autism have all sorts of combinations of traits.

They no longer think the spectrum is a long straight line. They think it is a circle so people can be in all sorts of different areas rather than at 1 end or the other.

Autism really is still quite a new condition relatively. They find out more and more all the time.

I understand the frustrations when you are looking at being diagnosed. If you get diagnosed and have a nice assessor. Ask them this question see what they say.

It's fine to question these things. This is just my explanation of why I don't think it would work. Hope it helps a little.

I believe, as I like detail and definitions, that research could be better focused. For those who have severe sysmptoms, non verbal, lash out, research could be focused on the causes of this (rather than the broad spectrum of autism) to help expectant parents etc.  There are cross overs with personality disorders but each is defined. 

People do say ‘the female phenotype’. Tania Marshall’s list is helpful but I know many NT who say I’ do that, I do that, and that’.  Is my difficulty to cope with these traits the only difference? Could it be something else? I try to keep an open mind and not get too attached to ASD, although I want it to be this so I can stop the search. 

I shoul of added that I don’t want to take anyone’s diagnosis away from them. I just wanted to know if this crosses people minds. I do believe I am on the spectrum but I get frustrated when it can be so vague at times. 

The problem with this is that the whole idea of the spectrum is people don't fit into blocks. They are all very different and have different traits. I'm a high functioning female with autism. I've only just been diagnosed at 29. I can make eye contact but it isn't always uncomfortable. I don't always use it with unfamiliar people. I often look away if I unexpectedly meet someone's eye contact. I do have special interests but they are perhaps not as obvious as someone with classic autism. I do stim to an extent. It comes out more like fidgeting. I tap when I get agitated. None of these things are necessarily obvious to people that don't know me because I can mask. There may be females that do do these things but does this make me "more" autistic than them. How would you divide these people up? I don't think you can define every area on the spectrum as it is so diverse. You would also probably get the issue that people wouldn't think those in that area struggle when they do.

Practioners do need to get better at diagnosing women I agree with this.