High functioning but mild or more severe ASD

[Progster]

My diagnostic report says that I have moderate Asperger's Syndrome, but elsewhere it says that I'm "high functioning."

Is this a contradiction? Is it possible to be 'high functioning' and yet have a moderate, or more severe level of autism? Or does "high functioning" mean, by definition, that your ASD is mild?

 

[Karin]

As far as I know the Asperger's diagnosis always imply you are high functioning. To the best of my knowledge, Asperger's means you had a normal or better than normal language development and was able to function well in your early years.

 

[Suzanne]

Karin, has it right! I mean that is the usual "professional" diagnostic of an aspie, but your report shows that they really have no idea what they are talking about!

I learned to crawl when I was 2 perhaps speak and I was 9 when I learned to read. Strangely though, despite always learning things late, I catch on fast and am very quick after that. So when I started to read at 9, I became a book worm and was not reading classic baby books!

Ok, so I have not been officially diagnosed as aspergic, but I know I am!

 

[Gordy]

I score very highly for various aspects f autism but my communication is above average. This masks the effect it has on my life.

 

[royinpink]

The "high functioning" label means you can walk, talk, and take care of your physical needs. Basically if you have normal or above intelligence, you are 'high functioning'. As that used to be part of the criteria for Asperger's (when Asperger's was a separate diagnosis under the DSM), it's pretty much high functioning by definition.

The 'moderate' part is just like, on the mini-scale of Asperger's, you fall in the middle. But that's the middle of the high (Asperger's) end, not the middle of the whole autism spectrum. And it's not part of the diagnosis itself, just a psychologist's assessment of your functioning.

 

[Progster]

Thanks for your replies so far. I think that I should specify that the diagnosis says "Long term moderate Asperger's Disorder, with high linguistic ability" and then in the report it says that I had a tendency to get caught up in academic details "in typical high functioning Asperger's fashion", but I do consider myself to be high functioning because I'm independent, though I do need support for some things.

The 'moderate' part is just like, on the mini-scale of Asperger's, you fall in the middle. But that's the middle of the high (Asperger's) end, not the middle of the whole autism spectrum. And it's not part of the diagnosis itself, just a psychologist's assessment of your functioning.

Thanks, this makes sense. I was diagnosed with the DSM IV - I suppose that under the DSM 5 that would translate to mild ASD?

 

[ItalianAspie]

Doc told me scale of 0-10 I'm a 9 on high functioning and a 9 on the severity. I am CEO of a successful (electrical Contracting) company I started 12 years ago. Also married with two kids. Life hasn't been easy..especially for others around me but overall I'm happy. I would actually consider myself high on the scale. I don't just have "enough" to have gotten my diagnosis, I have prob %90 of the stereotyped traits.

 

[Progster]

Doc told me scale of 0-10 I'm a 9 on high functioning and a 9 on the severity. I am CEO of a successful (electrical Contracting) company I started 12 years ago. Also married with two kids. Life hasn't been easy..especially for others around me but overall I'm happy. I would actually consider myself high on the scale. I don't just have "enough" to have gotten my diagnosis, I have prob %90 of the stereotyped traits.

I see, so I guess it is possible to have many ASD traits, and yet still be able to manage them and be sucessful, in a similar way to how Temple Grandin is, but not receive a diagnosis because one is 'high functioning' and managing the symptoms, but that doesn't mean that one doesn't have ASD

When I was assessed, I was having many problems, both in my relationships and at work as a direct result of my symptoms. Although I finished university, had a long term relationship, and previously had a job, I wouldn't say that I was 'high functioning' at that point in time, because I was being greatly affected. But one's functioning, or ability to cope can fluctuate over time, it is very circumstantial. I've also realise that one can need a lot of support in one area, such as social communication, or restricted interests, and yet be 'high functioning' in other areas and be alble to hold down a job and be successful in other areas of life.

 

[ItalianAspie]

Sorry for the confusion. I am a diagnosed Aspie.

 

[Progster]

Sorry for the confusion. I am a diagnosed Aspie.

Oh ok, thanks for the clarification.

 

[ItalianAspie]

I see, so I guess it is possible to have many ASD traits, and yet still be able to manage them and be sucessful, in a similar way to how Temple Grandin is, but not receive a diagnosis because one is 'high functioning' and managing the symptoms, but that doesn't mean that one doesn't have ASD

When I was assessed, I was having many problems, both in my relationships and at work as a direct result of my symptoms. Although I finished university, had a long term relationship, and previously had a job, I wouldn't say that I was 'high functioning' at that point in time, because I was being greatly affected. But one's functioning, or ability to cope can fluctuate over time, it is very circumstantial. I've also realise that one can need a lot of support in one area, such as social communication, or restricted interests, and yet be 'high functioning' in other areas and be alble to hold down a job and be successful in other areas of life.

Sorry, just to be clear. I am a diagnosed Aspie. I do have support, it's not easy for my wife. It's because of others I went to seek answers to what I have. See, I just turned 36, and only received my official diagnosis 2 months ago. So now my whole world has changed. Some say they are relieved to get a diagnosis. I literally felt as if I woke up from a dream, got light headed and nearly fainted. All these years I felt I was the perfect one and everyone else was crazy. Almost like I was screaming at everyone that "It's a red bowling ball you idiots!" When really it's was just an orange. Feels weird. I hate aspergers.

 

[Progster]

Sorry, just to be clear. I am a diagnosed Aspie. I do have support, it's not easy for my wife. It's because of others I went to seek answers to what I have. See, I just turned 36, and only received my official diagnosis 2 months ago. So now my whole world has changed. Some say they are relieved to get a diagnosis. I literally felt as if I woke up from a dream, got light headed and nearly fainted. All these years I felt I was the perfect one and everyone else was crazy. Almost like I was screaming at everyone that "It's a red bowling ball you idiots!" When really it's was just an orange. Feels weird. I hate aspergers.

I understand. For me it was more a relief when I got my diagnosis, but I know that it can be a shock, even when you're expecting it. It takes a while to process it, and to fully understand the full impact that it can have on your life.

To me it has always seemed that people are going around like sheep, blindly following each other unquestioningly, and accepting eveything without ever questioning it, just because that's 'the way it's done' or 'that's just the way things are' or just because everybody else is doing it, blinldy copying each other, and I could never understand that. It's one of many aspects of human behaviour that I've never been able to understand. I find it incredibly hard to accept things that I can't understand, or haven't experienced.

 

[royinpink]

Thanks, this makes sense. I was diagnosed with the DSM IV - I suppose that under the DSM 5 that would translate to mild ASD?

Basically, yeah. The DSM 5 has severity levels 1-3 (1: requiring support, 2: requiring substantial support, 3: requiring very substantial support), so high-functioning autism or Asperger's or PDD-NOS (which also doesn't exist in DSM-5) roughly equates to ASD level 1. If they think you are not severe enough to rate a level 1, you are likely to get a SCD (social (pragmatic) communication disorder) diagnosis instead, which is not on the autism spectrum.

 

[Progster]

Basically, yeah. The DSM 5 has severity levels 1-3 (1: requiring support, 2: requiring substantial support, 3: requiring very substantial support), so high-functioning autism or Asperger's or PDD-NOS (which also doesn't exist in DSM-5) roughly equates to ASD level 1. If they think you are not severe enough to rate a level 1, you are likely to get a SCD (social (pragmatic) communication disorder) diagnosis instead, which is not on the autism spectrum.

Yes, I understand this. From what I understand from talking to a couple of other people, you can get an overall diagnosis of ASD, and then a level 1 for one area of functioning, and a level 2 for a different area.

 

[NiceCupOfTea]

The 'high functioning' label is so vague as to be practically useless. For example I can do all this s*** in the first line of this quote. My IQ is normal or above normal.

The "high functioning" label means you can walk, talk, and take care of your physical needs. Basically if you have normal or above intelligence, you are 'high functioning'. As that used to be part of the criteria for Asperger's (when Asperger's was a separate diagnosis under the DSM), it's pretty much high functioning by definition.

But I'm 40 and I haven't been able to hold down a job or form a relationship. I didn't even manage to leave home until this year, and even that I couldn't have done without an awful lot of help. How is any of that high-functioning? I get so frustrated when I come to sites like these. I read reports which say stuff like 85-90% of people with asperger's are unemployed, 80% (less sure of this one...) are unmarried, etc., then I come to an online aspie forum and, lo and behold, 90% of people seem to have a job, be married, have children, etc. It's just weird; I at least expect virtually all NT women my age to be married and have a kid or two - it burns when apparently virtually all aspie women my age have the same thing as well!

How can somebody with supposedly normal intelligence and 'high functioning' autism have failed so badly at life? It doesn't make sense to me: I can't compute it in my brain.

 

[Tom]

I think the High Functioning term is meant mostly in the technical sense of measured capabilities, both physical and mental. (ie. Can walk, talk, read, write, and score in the normal range on aptitude tests)

But being HFA does not make you a normal neurotypical person. You are an autistic person with mechanical and cognitive functions in the normal range.

 

[AHugNKiss]

Yes, Tom, I think that hits the nail squarely on the head, as it were: high functioning relates to cognitive and physical development.

Given autism is a social communication disorder, then if you're high functioning enough that your cognitive and physical development hasn't been affected negatively, then it's left to determine exactly how much support you would need in order to function in the *social* sense ie making and maintaining friends/relationships. It's acknowledging that for all intents and purposes you will *appear* 'normal' (forgive the use of that word - I mean it in the sense of how you would be perceived by the average person looking upon you )

 

[royinpink]

The 'high functioning' label is so vague as to be practically useless. For example I can do all this s*** in the first line of this quote. My IQ is normal or above normal.




But I'm 40 and I haven't been able to hold down a job or form a relationship. I didn't even manage to leave home until this year, and even that I couldn't have done without an awful lot of help. How is any of that high-functioning? I get so frustrated when I come to sites like these. I read reports which say stuff like 85-90% of people with asperger's are unemployed, 80% (less sure of this one...) are unmarried, etc., then I come to an online aspie forum and, lo and behold, 90% of people seem to have a job, be married, have children, etc. It's just weird; I at least expect virtually all NT women my age to be married and have a kid or two - it burns when apparently virtually all aspie women my age have the same thing as well!

How can somebody with supposedly normal intelligence and 'high functioning' autism have failed so badly at life? It doesn't make sense to me: I can't compute it in my brain.

Seconding what Tom and AHugNKiss said above and adding, in case it's the term that's bugging you: 'high functioning' is relative to those with some of the more severe impairments on the spectrum: motor apraxia, apraxia of speech, and epilepsy, to name a few. They cannot walk or talk (leaving aside those who can type but not talk for the moment), and most need full-time care (leaving aside all the problems with what constitutes 'care' for the moment). Relative to these individuals, people with Asperger's are high-functioning. I don't like the term either. But perhaps then it will please you to know they changed to levels in the DSM-5 and the highest level explicitly states "requiring support," so it is acknowledged that high-functioning individuals still need support (which has always been the case).

 

[Progster]

The 'high functioning' label is so vague as to be practically useless. For example I can do all this s*** in the first line of this quote. My IQ is normal or above normal.

But I'm 40 and I haven't been able to hold down a job or form a relationship. I didn't even manage to leave home until this year, and even that I couldn't have done without an awful lot of help. How is any of that high-functioning? I get so frustrated when I come to sites like these. I read reports which say stuff like 85-90% of people with asperger's are unemployed, 80% (less sure of this one...) are unmarried, etc., then I come to an online aspie forum and, lo and behold, 90% of people seem to have a job, be married, have children, etc. It's just weird; I at least expect virtually all NT women my age to be married and have a kid or two - it burns when apparently virtually all aspie women my age have the same thing as well!

How can somebody with supposedly normal intelligence and 'high functioning' autism have failed so badly at life? It doesn't make sense to me: I can't compute it in my brain.

I can understand that this must be frustrating for you when you read such things. I think that this particular site does attract that kind of aspie, many of the more active members belong to the 'high functioning' group you describe, but that's because that kind of aspie is more likely to be very active on such a forum, IMO, and they come to attention. Those with more severe difficulties may not want to join, or post so often, or be so active in discussions (but that doesn't mean that they aren't there), so what you get is a distorted picture, and so you don't 'see' the full range of the spectrum on the site. Also, I'm not sure how accurate those statistics are, and they don't take into account the undiagnosed aspies, the ones who have jobs, relationships, etc, who find it hard to get a diagnosis for that reason, but are still aspie.

I think the High Functioning term is meant mostly in the technical sense of measured capabilities, both physical and mental. (ie. Can walk, talk, read, write, and score in the normal range on aptitude tests)

But being HFA does not make you a normal neurotypical person. You are an autistic person with mechanical and cognitive functions in the normal range.

Yes, this is certainly true. I may be able to walk, talk, look after myself, and even act neurotypical, but the way I think, feel and relate to the world is still different to how other people perceive it.

Yes, Tom, I think that hits the nail squarely on the head, as it were: high functioning relates to cognitive and physical development.

Given autism is a social communication disorder, then if you're high functioning enough that your cognitive and physical development hasn't been affected negatively, then it's left to determine exactly how much support you would need in order to function in the *social* sense ie making and maintaining friends/relationships. It's acknowledging that for all intents and purposes you will *appear* 'normal' (forgive the use of that word - I mean it in the sense of how you would be perceived by the average person looking upon you )

I found this comment very helpful - this makes perfect sense. I may be able to support myself and look after myself, but I still have a lot of social communication issues for which I need support, and I don't think I could live alone without support. I can see how I may have 'moderate' social communication difficulties and need support for those, and still be 'high functioning.'

Seconding what Tom and AHugNKiss said above and adding, in case it's the term that's bugging you: 'high functioning' is relative to those with some of the more severe impairments on the spectrum: motor apraxia, apraxia of speech, and epilepsy, to name a few. They cannot walk or talk (leaving aside those who can type but not talk for the moment), and most need full-time care (leaving aside all the problems with what constitutes 'care' for the moment). Relative to these individuals, people with Asperger's are high-functioning. I don't like the term either. But perhaps then it will please you to know they changed to levels in the DSM-5 and the highest level explicitly states "requiring support," so it is acknowledged that high-functioning individuals still need support (which has always been the case).

I agree. The term 'requiring support' is much less vague than the term 'high functioning.' It make a lot more sense and is much more helpful to describe the severity of symptoms in terms of how much support a person requires.

 

[NiceCupOfTea]

Thanks folks. That does make it clearer. I do appear "normal" at a glance, and even if - after getting to know me a little better - people sense something slightly off or odd about me, I don't think high-functioning autism or Asperger's would be most people's first thought. But I do remember telling my stoma nurse that I was going for an adult autism assessment, and her first words were literally "I'm not surprised!".

The thing is, if you have made it to adulthood and appear superficially normal, then there isn't any support. I had some follow-up after my ASD diagnosis, but they mostly concentrated on my sensory issues (which actually isn't the most important thing for me) and couldn't help me with my social ones. Despite that, it was still nice to talk to somebody who actually knew what adult autism was. I felt a little less alone. But now the follow-up has come to an end, and there is nothing to replace it with. In my experience of the mental health profession, half of them don't seem to understand depression and anxiety, let alone autism.

So that leaves me with only the internet for information, support etc. I'm not an internet n00b and I did all this a few years earlier with Crohn's disease. Basically, I wasn't getting any help or satisfaction from my doctors. I'm still a member of the same forum and am an active poster there, but mostly out of habit and just being used to the place. I guess after my ASD diagnosis, I thought I would do the same thing all over: join a forum, research the s*** out of the condition, and so on. Well, I joined a forum all right, but that ended so badly, it put me off anything to do with ASD for quite a while. Am I allowed to say there are so many posers on aforementioned forum?

The trouble was, I still had loads of unanswered questions. At least Crohn's only ruined 10 years of my life, ASD - and the comorbid depression and anxiety - has ruined all 40. So I started looking into ASD again. And here I am :-/