Can I be low functioning and people not reakize

Post Reply New Topic

This is why we have to have very clear definitions of what these terms mean. For example, those of you who have been around here long enough to remember Kingdom of Rats, she was low functioning by all obvious measures. She was an adult who was not toilet trained, in a wheelchair, non verbal, could not relate to people, could not bond with people at all, needed assistance with all ADLs, lived in a home, had no chance to ever live independently, but was one of the most intelligent and remarkable and gifted people I have ever met. She consistently had some of the most insightful posts that I have ever read and she trained therapy chickens.

Ezra, you are another one. I have known Ezra here since he was 12 and he is one of the most intelligent and thoughtful young men I know yet he is considered low functioning. With the right support, Ezra can achieve greatness in his life in so many areas.

So we have to really define what Low Functioning and High Functioning actually mean. If we are going to use those terms, we need consistent definitions for them. We also need a term for those of us who have dramatically fluctuating functioning levels. I can function like a 52 year old one moment, which is my chronological age, and literally in the next moment be functioning as a four year old which is my emotional age or as a 10 or twelve year old which is my practical intelligence age or as a mid teen which is another functioning age level I have sometimes or any combination of all of those. So it is important that we understand how all of this works and find terminology to identify people correctly so that protocols can be established that can meet the needs of everyone on the Spectrum.

Having gone from a slight autistic speech impediment to not being able to talk at all for a year due to a tongue replacement operation to "talking funny" today I can tell you that you are assumed to be ret*d if you are mute or have a significant speech impediment.

I've had one of those situations where I was introduced by a group of my friends friend at a cafe. Every autistic part of me came out and my social anxiety was revving at full blast. I was mute the entire time and was stimming very obviously. They thought I was ret*d. I don't blame them.When the waitress came, who we slightly knew, she was singing to us. I jokingly teased her and asked her who sings that song? After she said the singers name I said leave it to the singer. It was a joke and she started laughing. Well one of the guys hollered out that what I said was pretty smart. As if to say he was surprised I could say something that makes sense. This memory scars me till this day.

Did anyone pick up anything in you when you were young, and just not recognise it as autism? I wasn’t diagnosed until I was 21, and I have level 2 “moderate” autism. However, my mom figured out I was autistic when I was eight but couldn’t afford to have me assessed. I received supports at school with a 504 because of “unspecified developmental delays” that people assumed were part of my severely premature birth.

The point of my story, to answer your question, is that it is possible to be more severely autistic and not be formally identified as such, but those around you will see from a young age that there is “something” different about you. Have you always had the speech and other problems you mention? Were they ever a cause for concern for the adults around you?

This is accurate. My functioning levels can fluctuate significantly and rapidly from one moment to the next in any given context. Two weeks ago I was at an autism conference at the university I used to attend, and one moment I was listening to and understanding a nuanced and complex lecture, but five minutes later I was nonverbal and hitting my head repeatedly because the hand dryers in the bathroom kept going off unexpectedly and set off my sensory problems big time. Under normal circumstances I can drive, but after that meltdown, I needed my therapist who was also at the lecture to walk me home because I wasn’t safe to cross the street on my own. I haven’t met any other autistics apart from Skibum who fluctuate so severely, but she’s met quite a few I think.

I'm high functioning and I have been treated like a child on many occasions. I thinks it's because NT's intelligence tend to be evenly spread, so if they see someone with a deficit to their social intelligence they'll assume that the rest is the same. That's my hypothesis.

There is the Global Assessment of Functioning. It's not perfect but it's a start.
https://en.wikipedia.org/wiki/Global_As ... unctioning

Our friend whose name starts with M is like we are, not exactly in the same way but similar. He fluctuates as well. I wonder how many on WP fluctuate like StarTrekker and I do. Please let us know.

Given the complexity and variation of how people function with ASD and comorbids(if they are present) I think it would be very difficult to get a precise definition of functioning levels .

I think you are right. But it is very important that first responders, police officers, hospital staffs, teachers, and people who are parts of organizations that work with disabled people like Special Olympics and Easter Seals and group homes etc, especially, as well as the general public, start to understand that functioning levels are not always cut and dry. I had a conversation with an old friend from college the other day who was aggressively challenging my Autism diagnosis. She is a nurse and she told me that I need to get a second opinion because she does not think I am Autistic because people don't go in and out of Autism. .

I was explaining to her how sometimes I become like a literal four year old in my speech and comprehension and processing and sometimes my levels of functioning can be so low that I can't do anything while sometimes I am so high functioning that people think I am an amazing super advanced nt. She told me that I become like a four year old because of anxiety or depression. And she said that she does not remember that happening to me when she knew me so she must be right and I must be wrong so I need a second opinion about my diagnosis. She knew me 30 years ago when I had to hide all my traits and symptoms to survive. And I don't become like a four year old because of anxiety or depression. I know exactly what brings about my younger personas. But because she is not familiar with that being something that can happen in Autism, I must be wrong about being Autistic and I have to second guess my diagnosis.

She had worked in a school for special needs children and so she only saw Autistic children in the classroom. Or she sees Autistic people at the hospital since she is a nurse. So because she worked at this school, she thinks she understands Autism so she was arguing with me that because my functioning levels change so dramatically that I must not be Autistic because I am going in and out of Autism. That kind of argument infuriates me to no end. People who don't understand my condition will challenge it and expect me to doubt my own condition and diagnosis. If she had any idea of how I was actually diagnosed and the people who were involved in putting together my diagnosis, it would shut her up. But even if I told her, it would have no impact because she has no idea who these people are. But that is the problem, if you don't fit into the little Autism definition box that people think you should fit into because they only have one definition of Autism and of functioning levels, they challenge you to the core and they bully you and traumatize you even if they are not doing it on purpose.

And then I get told that I just have to understand that they are not bullying and traumatizing me on purpose and that they are just doing that because they don't understand me. Well I am getting tired of getting treated this way and of having to constantly defend my existence to everyone and to just have to understand that it's because they are ignorant. Ignorance is not a justification for bullying and traumatizing people. It's about time they get educated.

If you have met one person with autism then you have met one person with autism. Lumping people into categories is not really helpful other than working out if you qualify for government funding.

^^ You are on the button as to functioning levels not being cut and dry. For many of us it depends on the situation and task at hand . Adaptive functioning levels can vary dramatically within a person.

For example I manage my finances ok , but struggle due to EF difficulties with keeping a place clean and tidy. I also have problems getting to places, and am heavily reliant on my stepdaughter to get me to places.

I can come over as capable if a little odd, but change the setting and the holes in my ability to function become all too apparent.

This is based on functioning levels re mental health, but also maybe relevant to ASD. My cpn has said my functioning level with support is high medium/medium high but was much lower at my last place where I wasn't getting the support I get now.

to me using the "low function" label to completely classify somebody is like using the "r-word" to classify somebody

I just pulled out my diagnosis. I looked at my GAF score rating. When I was diagnosed 4 and 1/2 years ago my GAF score was 40. But knowing myself as well as I do, I fit more of the 40 to 50 category. The 40 to 50 describes me very accurately. I do not fit the 30-40.

We have to create a system so that people can get their needs met. Functioning labels are sometimes used to determine whose needs get me and whose don't, who gets help and who does not. There has to be a better way.

One thing I find is that the ones who do receive help are the lower end of the spectrum but people on the mild or higher end are expected to meet the expectations of NTs when we can't. Everybody deserves the help they can get. I think it has to do with the current business model that medical institutions operate. There isn't much money to be made on autistic people as there are on people with adhd. We, the autistic, people should stand together on these issues.