What are some disadvantages of HFA to LFA

[Pats]

We've had the discussion that it's a spectrum, yes. Wasn't sure how else to put this, though. Since doctors and all still look at the functioning level of those on the spectrum, what would you say are some of the disadvantages so-called high functioning has.

For one, I think more is expected of us socially. Like, those of us who want to be alone or don't feel the need to be out socializing, we are pressured by others to get out and do things or get out and meet people. It's hard for them to accept "I don't want to".

General population think of aspergers, and aspergers are 'supposed' to be more intelligent, so when people hear HFA or aspergers they expect more from you intellectually.

You're supposed to be able to take care of yourself in every way.

Expectations that our traits are or should be more manageable.

 

[Streetwise]

at least we are left to rot in a place we want to rot ,if you can’t communicate your thoughts, you can be manipulated much more easily or abused ,conversely if you live alone you can be manipulated and be disrespected !!!into the bargain, for instance if somebody calls me a tree hugger ,because I have mild high functioning autism !,I’m expected !to be able to cope with it !myself !I’m not supposed to think it’s abusive !and I’m not supposed to be able to ask somebody to do something !that somebody who has a different need would be given help for !,like the person who called me or other people a tree hugger ,should be taught respect.

 

[Wolfnox]

I think some people use it to disregard some of the symptoms. By saying your not that bad. How do they know?

 

[GadAbout]

I think a primary disadvantage of LFA is that you would be more likely to be mistreated or taken advantage of; conversely, HFA should be able to have more choices and get more of their needs and desires met.

Given the choice, HFA is better. Of course, we are not given the choice.

 

[Autistamatic]

Perhaps we should stop perpetuating the myth that such things exist. HFA & LFA are artificial designations that are essentially meaningless. There is only autism and our "functioning" fluctuates on a daily basis. What matters and does make a difference is the presence of other differences & conditions co-occurring with autism which make some of our lives more difficult than they would be if autism were our only difference.

What most people think of as low functioning is just autism coupled with Intellectual Disability - a completely separate condition which is often left by the wayside because of the misconception that they "suffer" from some more severe form of autism than others. In some cases it is simply because someone is non verbal, which many of go through at some stage. I've conversed with a number of non-verbal autistics over the last year or so, and there is nothing low functioning about any of them when they communicate in a way they feel comfortable.

Asperger's and functioning labels were dropped from the DSM several years ago and will not be present in the international manual the ICD in it's next published revision.

I appreciate what you're asking @Pats but I do worry that I see members new and old describing themselves as mild and/or high functioning. How can we expect society to look past these labels and treat us all with more respect if we keep on using them ourselves?

Whether the doctor who diagnosed us said Asperger's, HFA or ASD 1,2 or 3 - we are all autistic and that is the only label that need matter if we want to see those barriers fall and all autistics get the same treatment, respect, rights and accomodations.

 

[Chrysanthemum]

We've had the discussion that it's a spectrum, yes. Wasn't sure how else to put this, though. Since doctors and all still look at the functioning level of those on the spectrum, what would you say are some of the disadvantages so-called high functioning has.

For one, I think more is expected of us socially. Like, those of us who want to be alone or don't feel the need to be out socializing, we are pressured by others to get out and do things or get out and meet people. It's hard for them to accept "I don't want to".

General population think of aspergers, and aspergers are 'supposed' to be more intelligent, so when people hear HFA or aspergers they expect more from you intellectually.

You're supposed to be able to take care of yourself in every way.

Expectations that our traits are or should be more manageable.

I was diagnosed with Autistic Disorder (I guess "classic" autism) during middle childhood, however I believe that I was diagnosed/labelled as having "high functioning" autism, perhaps partly because my IQ was measured as being in the average range; during early childhood I had moderate to severe receptive and expressive language delay though my language improved over time.

Although I was diagnosed with "high functioning" autism, I don't have the impression that my parents were told to have high expectations of me from the psychologist who diagnosed me with "high functioning" autism.

I'd say that the exact disadvantages probably vary from individual to individual, because each person diagnosed with autism may have different severities of difficulties in different areas.

For those diagnosed with an Autism Spectrum Disorder who have relatively good verbal (or written) communication skills, I'd say the advantage of the communication skill is being able to communicate with words. Perhaps the disadvantage for some people with Autism Spectrum Disorder who have at least normal language skills and intellectual abilities is that people may assume that the presence of normal language and intellectual ability in the person with autism means other abilities are also at least "normal" (not sure whether or not most people actually think that though).

While I am not suggesting that I think a person's measured IQ is always accurate or can ever tell everything about a person's abilities, potential and skill set, I'd point out that it seems to have been possible for a person to have a low average (i.e 80-89) or borderline (i.e. 70-79) measured IQ and have been diagnosed with "high functioning" autism (or perhaps even Asperger's if there was no significant language delay in the person?).

 

[Pats]

Perhaps we should stop perpetuating the myth that such things exist. HFA & LFA are artificial designations that are essentially meaningless. There is only autism and our "functioning" fluctuates on a daily basis. What matters and does make a difference is the presence of other differences & conditions co-occurring with autism which make some of our lives more difficult than they would be if autism were our only difference.

What most people think of as low functioning is just autism coupled with Intellectual Disability - a completely separate condition which is often left by the wayside because of the misconception that they "suffer" from some more severe form of autism than others. In some cases it is simply because someone is non verbal, which many of go through at some stage. I've conversed with a number of non-verbal autistics over the last year or so, and there is nothing low functioning about any of them when they communicate in a way they feel comfortable.

Asperger's and functioning labels were dropped from the DSM several years ago and will not be present in the international manual the ICD in it's next published revision.

I appreciate what you're asking @Pats but I do worry that I see members new and old describing themselves as mild and/or high functioning. How can we expect society to look past these labels and treat us all with more respect if we keep on using them ourselves?

Whether the doctor who diagnosed us said Asperger's, HFA or ASD 1,2 or 3 - we are all autistic and that is the only label that need matter if we want to see those barriers fall and all autistics get the same treatment, respect, rights and accomodations.

Part of my point is what you're saying - there are disadvantages to the HFA label, instead of just being autistic. Because of that label more is expected from us.

 

[Progster]

I think one problem is that a lot of people, when they hear the term 'autism', 'high functioning' or otherwise, think of fictitious media stereotypes such as Rain Man or Sheldon Cooper, and then wonder how you are not either melting down every two seconds, can't count toothpicks or how you aren't a maths genius or music progidy, and how you can be so normal. I appear to be 'normal' in many respects, and often find that certain problems such as sensory or social anxiety issues aren't taken seriously.

 

[Autistamatic]

I think one problem is that a lot of people, when they hear the term 'autism', 'high functioning' or otherwise, think of fictitious media stereotypes such as Rain Man or Sheldon Cooper, and then wonder how you are not either melting down every two seconds, can't count toothpicks or how you aren't a maths genius or music progidy, and how you can be so normal. I appear to be 'normal' in many respects, and often find that certain problems such as sensory or social anxiety issues aren't taken seriously.

That is exactly the situation I was in with my employer at the beginning of 2018. Partly because my autism isn't stereotypical and it was covered by an effective mask, when my autism became evident one day they refused to believe it was true. Even though I'd told them about it they had assumed it was some weird fantasy I'd concocted. It led to months of me dredging up the evidence from the distant past to prove it to them.

They were willing to accept that I was clever and a bit weird, but characterised my telling the truth when they didn't want me to, as some nefarious scheme to destroy the company from within rather than a pretty common characteristic of an autistic person.

 

[Bolletje]

I think high expectations can be a huge issue. I'm good enough at masking that no one notices, which is why I wasn't diagnosed until my late twenties. I'm intelligent enough to have successfully pursued an academic career, but I've experienced a few hurdles due to people giving me vague assignments, which I have a lot of trouble working with. I also don't do well with giving speeches from a paper, I do them from memory and make adjustments as I go. I got into a big argument with my promotor over this when I was presenting my research at an international medical convention. My promotor wanted me to send her a copy of me speech for pre-approval and I told her I would probably not be giving the same talk in the end. When I presented my research the talk was generally well-received because I added in spontaneous jokes here and there to punctuate what I was saying. She did not approve of it at all, gave me a stern talking to afterwards and ended up pulling me off the project to write an article for international publication, instead giving it to someone else.
I also get into trouble socially. When I'm in a good mood I can be a social butterfly, but I don't do well with one on one meetings, lunch with colleagues or parties where I don't know a lot of people. Especially when people have formed smaller groups in which they're talking. My friends often think this is because I'm shy, which I am absolutely not. The truth is that I just feel highly uncomfortable and don't really know what to talk about, when to talk and when it is appropriate to insert myself into a conversation. The only way to circumvent this, for me, is by drinking alcohol (which I don't do at work, obviously).
Then there's big groups of people, which can occasionally give me panic attacks. But because I mask so well and a lot of people aren't aware of my autism on a daily basis, they tend to respond badly when I freak out and hide myself somewhere with a crying spell. Before my diagnosis I've had my parents get so angry with me when I hid in my room sobbing hysterically while they had a party at our house. They didn't understand and felt like I was ruining the party with my hysteria. They would order me to stop crying and come back to the party, which obviously only made things worse. They know noww, but I'm still wondering whether they'd be able to deal with it if it happened again. I have my dad's 65th birthday coming up and we're throwing a huge surprise party at my parents' house with an expected number of 50 guests. I think I'll have to have a few drinks to get through that.

 

[Sarah S]

What most people think of as low functioning is just autism coupled with Intellectual Disability - a completely separate condition which is often left by the wayside because of the misconception that they "suffer" from some more severe form of autism than others. In some cases it is simply because someone is non verbal, which many of go through at some stage. I've conversed with a number of non-verbal autistics over the last year or so, and there is nothing low functioning about any of them when they communicate in a way they feel comfortable..

Actually Intellectual disablity is a well known and more often then not Co morbid diagnose to ASD

About 1 percent of the general population is thought to have Intellectual Disability, and about 10% of individuals with Intellectual Disability have Autism Spectrum Disorder (ASD) or Autistic traits. However, a much higher percentage of individuals with ASD have Intellectual Disability.

As of the most recent prevalence study conducted by the Centers for Disease Control (CDC), which studied records from 2008, 38% of children with ASD had Intellectual Disability. (24% of children with ASD were considered in the borderline range in terms of intellectual ability – an IQ of 71–85; 38% had IQ scores over 85, considered average or above average.) A higher proportion of females with ASD had Intellectual Disability compared with males: 46% of females with ASD had intellectual disability, compared with 37% of males

Intellectual Disability and ASD | Center for Autism Research

And since then the actuall having to have below 70 IQ have been down sized and less important for diagnose but still a part of said evaluation tho. =i e you cant have 100 + IQ and get this diagnose

 

[dragonfire42]

The main problem for me is that my functioning level fluctuates. People see me at my best and assume I'm always capable of that, and if I don't meet their expectations it must be because I'm not trying hard enough, lazy, and/or don't care - they insist that I simply don't want to do things that I'm actually trying my hardest to do.

 

[Autistamatic]

Actually Intellectual disablity is a well known and more often then not Co morbid diagnose to ASD

According to more recent figures taken from a study published in the BMJ (British Medical Journal) collated from the census of 2011 (5.3 million people), the level of co-occurring IDs is closer to 20% meaning only 1 in 5 of us.
Relative influence of intellectual disabilities and autism on mental and general health in Scotland: a cross-sectional study of a whole country of 5.3 million children and adults

 

[the_tortoise]

The main problem for me is that my functioning level fluctuates. People see me at my best and assume I'm always capable of that, and if I don't meet their expectations it must be because I'm not trying hard enough, lazy, and/or don't care - they insist that I simply don't want to do things that I'm actually trying my hardest to do.

This and its opposite (people assuming i could never do something because they saw me unable to do it in a particular context) happen to me as well.

The assumptions and ignorance are infuriating, hurtful, and depressing. Ability to perform a task, especially if you have a neurodevelopmental disability, often depends on or is affected by a whole lot of variables ....but people almost never think about or question what goes into ability and a lot of people are closed-minded and harshly judgemental.

 

[Sarah S]

According to more recent figures taken from a study published in the BMJ (British Medical Journal) collated from the census of 2011 (5.3 million people), the level of co-occurring IDs is closer to 20% meaning only 1 in 5 of us.
Relative influence of intellectual disabilities and autism on mental and general health in Scotland: a cross-sectional study of a whole country of 5.3 million children and adults

Very Informative indeed from what i could read. I remember i read somewhere that it was up to 30 % with ASD that also had MILD ID tho. Never the less as with all of the Co morbid diagnosis not everyone gets all of them thank god and as usual its highly individual

And heres a recent research from 2019 saying Nearly one in three autistic people has intellectual disability, defined as an intelligence quotient (IQ) below 70. This condition can limit these individuals’ adaptive behaviors — daily living skills such as self-care, managing money and maintaining relationships.

The new study tracked 106 autistic children at four time points from ages 5 to 20 years. Of these children, 98 had mild to severe intellectual disability at age 5 — meaning they had an estimated IQ of 20 to 69.

In autistic children, low intelligence forecasts later difficulties

This said as i said before NOT everyone gets this. never said this never meant to imply this