What behaviors/abilities/symptoms make a person “high functioning” or not, in your view?

[Aspychata]

Interesting discussion. I updated my diagnosis status yesterday to High-Functioning Autistic diagnosis because that was the closest description available. I just removed that descriptor from my Avatar, as I had no idea it would be viewed as offensive by anyone.

For the record, I have been continuously employed the past 34 years, and have functioned independently since graduating from high school. I learned to interact socially by emulating others and continually working to improve myself. Despite earning two masters degrees, one doctorate degree and numerous certifications in Accounting, Information Technology, and Information Security, I struggle with Generalized Anxiety Disorder which causes me to interview poorly. I also have few friends due to social anxiety. However, the most problematic aspect is insomnia, for which I sought treatment.

Now one day after receiving my diagnosis, I suddenly understand that I must be careful to conceal my autistic status from neurotypicals at work, and also must be careful interacting on this forum due to the differential nature of our diagnoses of ASD1, ASD2, ASD3, Asperger's, and self diagnosed statuses. Not to mention that my wife now feels stigmatized by my diagnosis. So, as far as I am concerned I am effectively screwed. This discussion thread makes that very clear.

Sorry you feel this way. The fact you are in a relationship is very important, that you are married. Alot of us are unable to have this. The fact that you have been gainfully employed for quite a long time is another success. You wife should be accepting of this and support you, not the reverse. Yes, you had to work extra hard to get there, but you didn't give up. I say dam the diagnosis, you made it in your lifetime.

 

[Juliettaa]

They are only derogatory when taken out of context.

I disagree.

They're derogatory. Period.

 

[the_tortoise]

If your autism was temporarily gone and all that you had left was your co-morbid conditions, would they be

• mild/quirky, (e.g. face-blindness)
  
• severe/debilitating, (e.g. infantilism) or
• somewhere between the two (e.g. mutism, learning disabilities)?

People in the first group are said to be ASD1.
The second group describes ASD3.
The third, ASD2.

Since ASD2 & 3 require special education services, they are sometimes referred to as "short-bus" autism. Similarly, ASD1 is referred to as "long-bus" autism.

Are severity levels meant to account for comorbids also or just ASD symptoms?

I was under the impression that they were just supposed to measure the support needs created by core ASD symptoms but I don’t actually know.

It makes way more sense to me, if you are trying to determine support needs for somebody, to consider everything together because we have only one brain/body with all our issues interacting the same no matter what/how many labels you use to describe them.

 

[GadAbout]

They are only derogatory when taken out of context.

So, say a little kid has a unique set of strengths and weaknesses but has been identified as needing special education services... and then he overhears someone talk about "short bus autism" and he thinks, "but I ride a short bus..." And then he starts to understand that he is different and inferior.

If the term would cause someone to feel bad, then by definition, it's derogatory.

Like, "nappy haired" .... yeah, derogatory.

 

[Crossbreed]

Are severity levels meant to account for comorbids also or just ASD symptoms?

I was under the impression that they were just supposed to measure the support needs created by core ASD symptoms but I don’t actually know.

There is only one ASD. Severity levels are completely determined by attendant co-morbid conditions. They are supplemental and not the autism itself.

 

[Crossbreed]

and then he overhears someone talk about "short bus autism" and he thinks, "but I ride a short bus..." And then he starts to understand that he is different and inferior.

Would "special educational" autism be better? Someone has to manage that need.

 

[GadAbout]

To me, it does feel better. Others may disagree.

 

[Crossbreed]

I say dam the diagnosis, you made it in your lifetime.

Finally, someone who gives a...

Hoover Dam

​

 

[ftfipps]

Dude, high functioning is being able to have a significant other possibly and a career. That's all......Most of us are barely able to even have that.

 

[Au Naturel]

I am an ASD-1! This is a very useful classification system that I didn't know existed.

ASD 1 is the highest level the DSM-5 mentions. But we are on a spectrum. There are plenty of people "on the spectrum" who would rank as an ASD .5 or .225718 or whatever if it were treated as a true spectrum and not pigeonholed categories. There are people who do not "need" help to get by in life but a little awareness would sure be nice. An understanding of what is going on can make life ever so much more enjoyable and productive.

I want to reiterate what GadAbout said. Lost potential, under (or un) employment, marital strife, parental inadequacy, social isolation, lack of self-esteem. A person can suffer all those things and still survive without help. But they ought not to have to.

 

[Au Naturel]

Although some try to deny the utility of IQ, it is useful...

A high IQ can be very useful socially. One can learn algorithms to use in place of what comes instinctively to most. It is slow and comparatively clumsy but much better than a blank look on my face or missing an important emotional sign completely.

 

[Aspychata]

Finally, someone who gives a...

Hoover Dam

​

That looks like lake powell, l drove over that bridge to campsite. That is how much the water dropped where you see the white areas on rocks. Every year in AZ- that level in Lake Powell dropped. It was sad to see.

 

[tducey]

I'm high functioning. I think high functioning means you're able to do a lot of things plus you're verbal.

 

[HidinginPlainSight]

The "functioning" part is most commonly associated with aptitude. This is why an IQ test is such a large portion of the diagnostic process.

 

[Shadowspin]

Apologies for the incoming wall of text.

I wonder this too. I was diagnosed ASD level one- “high functioning”. But I can’t hold a job, I do have to be reminded to shower and brush my hair and teeth. I absolutely can’t live alone, or support myself financially. Before I was diagnosed it was all blamed on other things- the nature of our society, bad luck, depression, on and on.

I’ve pointed out all these things to my therapist. And it seems to come down to the fact that I don’t look filthy, you can’t smell me across the room, and as long as you don’t mind the lack of eye contact I can mostly hold an intelligible conversation.

Legit, that’s what I was told. I don’t LOOK autistic.

When people look at me they see a white, ‘moderately attractive’
and ‘healthy-weight’ person who speaks with something resembling the manner of an upper-middle-class woman. If I was a ‘person of color’ or ‘overweight’ or ‘plain’ or spoke more like ‘lower-class’ (poor) people speak, I imagine the diagnosis would be different. If I were a man, and not just seen as an accessory to the people around me, I might have a different diagnosis, because I would be expected to ACTUALLY hold a job. Not just look like maybe I could.

Sorry if I’m repeating points here, I’m typing on my phone and the editing features are not easy to use.

My point is that these functioning labels are all about how much of a hassle they see you are, and how much privilege they perceive you as having. It doesn’t matter that I have, literally, been homeless. I don’t look like they expect a formerly homeless person should look. It doesn’t matter that I can go months without remembering to shower. They can’t smell me, so they either don’t believe me or don’t think it counts. It doesn’t matter that sometimes I am nonverbal. At the moment they see me I am talking. And these people, these doctors, that diagnose us? They’re from the upper middle class, and they impose their aesthetic principles on us. I speak a way that doesn’t offend them. It matters not that my manner of speaking is quite often inappropriate to the situation, or that much of what I say is scripted. It’s their sort of script. And doctors learn to be specific. So when I am pedantic and literal... well, that’s seen as a positive thing. They don’t think through to the fact that on a job, being pedantic and literal can get you fired. Being pedantic and literal makes you fail classes, or file paperwork incorrectly, or lose friendships.

And I have found no way to EXPLAIN that I need more help if I am to ever be self-supporting. I could not possibly remember to pay rent every month as I am, much less correctly fill out the paperwork to rent, much less form the interpersonal connections that are how most decent rental places are found, much less HOLD A JOB TO PAY THE BILLS. All I can do so far is bring up my individual problems, and explain to them (because they never think it through on their own) how my impairments mean I literally can’t do these things they think are so simple. And then, one small thing by one small thing, they realize that I am not just quirky. That I am not functioning they way they wish I was. I doubt they’ll change my diagnosis. They will compare me to people with secondary physical disabilities (though I do in fact also have those, however invisible), people who smell or stutter or just. Look. Poor.

tl;dr: if you’re hyperlexic you can’t possibly need help

 

[Aspychata]

Apologies for the incoming wall of text.

I wonder this too. I was diagnosed ASD level one- “high functioning”. But I can’t hold a job, I do have to be reminded to shower and brush my hair and teeth. I absolutely can’t live alone, or support myself financially. Before I was diagnosed it was all blamed on other things- the nature of our society, bad luck, depression, on and on.

I’ve pointed out all these things to my therapist. And it seems to come down to the fact that I don’t look filthy, you can’t smell me across the room, and as long as you don’t mind the lack of eye contact I can mostly hold an intelligible conversation.

Legit, that’s what I was told. I don’t LOOK autistic.

When people look at me they see a white, ‘moderately attractive’
and ‘healthy-weight’ person who speaks with something resembling the manner of an upper-middle-class woman. If I was a ‘person of color’ or ‘overweight’ or ‘plain’ or spoke more like ‘lower-class’ (poor) people speak, I imagine the diagnosis would be different. If I were a man, and not just seen as an accessory to the people around me, I might have a different diagnosis, because I would be expected to ACTUALLY hold a job. Not just look like maybe I could.

Sorry if I’m repeating points here, I’m typing on my phone and the editing features are not easy to use.

My point is that these functioning labels are all about how much of a hassle they see you are, and how much privilege they perceive you as having. It doesn’t matter that I have, literally, been homeless. I don’t look like they expect a formerly homeless person should look. It doesn’t matter that I can go months without remembering to shower. They can’t smell me, so they either don’t believe me or don’t think it counts. It doesn’t matter that sometimes I am nonverbal. At the moment they see me I am talking. And these people, these doctors, that diagnose us? They’re from the upper middle class, and they impose their aesthetic principles on us. I speak a way that doesn’t offend them. It matters not that my manner of speaking is quite often inappropriate to the situation, or that much of what I say is scripted. It’s their sort of script. And doctors learn to be specific. So when I am pedantic and literal... well, that’s seen as a positive thing. They don’t think through to the fact that on a job, being pedantic and literal can get you fired. Being pedantic and literal makes you fail classes, or file paperwork incorrectly, or lose friendships.

And I have found no way to EXPLAIN that I need more help if I am to ever be self-supporting. I could not possibly remember to pay rent every month as I am, much less correctly fill out the paperwork to rent, much less form the interpersonal connections that are how most decent rental places are found, much less HOLD A JOB TO PAY THE BILLS. All I can do so far is bring up my individual problems, and explain to them (because they never think it through on their own) how my impairments mean I literally can’t do these things they think are so simple. And then, one small thing by one small thing, they realize that I am not just quirky. That I am not functioning they way they wish I was. I doubt they’ll change my diagnosis. They will compare me to people with secondary physical disabilities (though I do in fact also have those, however invisible), people who smell or stutter or just. Look. Poor.

tl;dr: if you’re hyperlexic you can’t possibly need help

I get that. My past trauma made me stumble slowly back into self-sufficiency yet l constantly have to deal with unwanted male attention because l am supposed to be handicapped enough to not be self-sufficient. No matter what our limitations are, some of us do want to take care of ourselves and survive. I only discovered l had some form of autism when l finally finished up divorce. But l was grappling with PTSD by then. So l bounced around between high and low as l navigated my PTSD, now l function at a high level. Sometimes my PTSD threw me right into to just functioning enough to get through the day. And my stims became evident as l stressed out.

 

[GadAbout]

Apologies for the incoming wall of text.

I wonder this too. I was diagnosed ASD level one- “high functioning”. But I can’t hold a job, I do have to be reminded to shower and brush my hair and teeth. I absolutely can’t live alone, or support myself financially. Before I was diagnosed it was all blamed on other things- the nature of our society, bad luck, depression, on and on.

I’ve pointed out all these things to my therapist. And it seems to come down to the fact that I don’t look filthy, you can’t smell me across the room, and as long as you don’t mind the lack of eye contact I can mostly hold an intelligible conversation.

Legit, that’s what I was told. I don’t LOOK autistic.

When people look at me they see a white, ‘moderately attractive’
and ‘healthy-weight’ person who speaks with something resembling the manner of an upper-middle-class woman. If I was a ‘person of color’ or ‘overweight’ or ‘plain’ or spoke more like ‘lower-class’ (poor) people speak, I imagine the diagnosis would be different. If I were a man, and not just seen as an accessory to the people around me, I might have a different diagnosis, because I would be expected to ACTUALLY hold a job. Not just look like maybe I could.

Sorry if I’m repeating points here, I’m typing on my phone and the editing features are not easy to use.

My point is that these functioning labels are all about how much of a hassle they see you are, and how much privilege they perceive you as having. It doesn’t matter that I have, literally, been homeless. I don’t look like they expect a formerly homeless person should look. It doesn’t matter that I can go months without remembering to shower. They can’t smell me, so they either don’t believe me or don’t think it counts. It doesn’t matter that sometimes I am nonverbal. At the moment they see me I am talking. And these people, these doctors, that diagnose us? They’re from the upper middle class, and they impose their aesthetic principles on us. I speak a way that doesn’t offend them. It matters not that my manner of speaking is quite often inappropriate to the situation, or that much of what I say is scripted. It’s their sort of script. And doctors learn to be specific. So when I am pedantic and literal... well, that’s seen as a positive thing. They don’t think through to the fact that on a job, being pedantic and literal can get you fired. Being pedantic and literal makes you fail classes, or file paperwork incorrectly, or lose friendships.

And I have found no way to EXPLAIN that I need more help if I am to ever be self-supporting. I could not possibly remember to pay rent every month as I am, much less correctly fill out the paperwork to rent, much less form the interpersonal connections that are how most decent rental places are found, much less HOLD A JOB TO PAY THE BILLS. All I can do so far is bring up my individual problems, and explain to them (because they never think it through on their own) how my impairments mean I literally can’t do these things they think are so simple. And then, one small thing by one small thing, they realize that I am not just quirky. That I am not functioning they way they wish I was. I doubt they’ll change my diagnosis. They will compare me to people with secondary physical disabilities (though I do in fact also have those, however invisible), people who smell or stutter or just. Look. Poor.

tl;dr: if you’re hyperlexic you can’t possibly need help

I think what you are saying is you are a victim of prejudice. Only it's not prejudice against you but prejudice in your favor. These docs etc. are thinking you are higher functioning than you really are, because you come across as someone sort of like them. They can't see your weaknesses exactly because they identify with you too much!

Aside from the correctness of the diagnosis is the fact that services for autistic adults in the US and most of the world are nil, unless you are a totally nonverbal, low-IQ individual who no one can identify with. If you were diagnosed as needing more support, then it would be admitting that the health care and social service systems are letting down people who badly need more help.

A gambit that might work for you is getting a co-morbid diagnosed. Then you can have an advocate make the case that although your autism is high-functioning, in combination with the co-morbid, you are needing more services. The co-morbid could be something like agoraphobia, panic disorder, major depression, bipolar, etc. My daughter has suffered repeated concussions that have greatly magnified the significance of the pre-existing autism. She is still not stupid, can carry on a fairly intellectual conversation, but her executive function is horrible and she is very much more prone to melt-downs than she used to be before the concussions. A few months ago I called the disability service to explain that she needed more help than she was getting on the basis of autism alone. I didn't hear anything more about it for 6 weeks and assumed my advocacy had failed, but then I got a phone call letting me know she had been re-considered as an exception due to the combination of disabling conditions!

She now gets a chore worker coming in once a week as well as a mental health therapist coming to her apartment once a week for psychotherapy! I didn't even know the latter service existed. I am very happy for her that she is getting the additional help she needs.

 

[Yeshuasdaughter]

I'm unable to hold a job or go to school. Can't plan much over more than a day. I have a one track mind. Can't handle stress. Am sometimes nonverbal.

Then again, I am a mom, pay all my bills, keep a roof over my head, homeschool my teenager, and can drive well.

I am considered high functioning.

 

[Au Naturel]

"I suddenly understand that I must be careful to conceal my autistic status from neurotypicals at work"

Why would you tell them? None of their business. I wouldn't tell them about my sex life or my finances either.

"Must be careful interacting on this forum due to the differential nature of our diagnoses of ASD1, ASD2, ASD3, Asperger's, and self-diagnosed statuses."

Why? Nobody on this forum gains anything if we all walk around like we were barefoot on broken glass.

"Not to mention that my wife now feels stigmatized by my diagnosis."

Really? Unless you broadcast it to the world, where's the stigma? There is no shame in it. The diagnosis is just an abbreviation for a part of you. Nothing changed. Nor is there shame in marriage counseling.

We spend our days trying to look at ourselves through other people's eyes. We then imagine them seeing our darkest fears. Truth is we don't have a clue about what they are seeing. More often than not they are too busy doing the same to even notice us.