... to share this explanation of the Autism spectrum

[KihoBebiluPute]

This isn't a thread-about-a-thread but I wrote a version of the below in response to another thread that then got deleted before I could post it. I think it's useful information so thought I would start a new thread that isn't about one particular person but just general info.

Posting in AIBU because the original thread was here though.

The Autism spectrum isn't a line from "mild" to "severe" - it's like there's a colour wheel, and each person's symptoms are like a different cut-out shape across different sections of this wheel, so no two people with autism have exactly the same issues to contend with. There isn't a "mild" end of the spectrum which is almost the same as being a neurotypical person - NT people are not even on the same colour wheel at all. Terms like "mild" and "severe" are really unhelpful because they tend to refer to how much the issue is perceived by a neurotypical person. Someone can have a particular issue quite severely in terms of how much stress and difficulty it causes them, but may mask the issue. Obviously some people have much more significant challenges than others and may have additional conditions as well as the ASD, but people who are able to function to some extent in society don't have a less intense type of the condition, they are just affected in a different way.

High functioning and low functioning ar not indications of how well you “function” in the world OR how verbal you are OR how independent. The function they are referring to is IQ.

Under 80 = LF
Over 80 = HF

@5zeds hrrm who uses this definition, do you have a link please?

Functioning is functioning not cognitive ability or iq.

Anyone using the terms should be using them correctly.

@Kitewoman

Do you honestly believe that someone with profound autism is just as affected by autism as someone who is married and works etc?

the way I read febbfad, they actually think that those with severe ASD is less affected as they are too disabled to notice, lucky them, eh?

Sorry I've only just read this, yes I agree.

@5zeds

Anyone using the terms should be using them correctly.

I agree, I've never read that iq was part of the definition and have always seen interfered to in terms of ability to function. I have read that where an iq can be determined they can add a co morbid ld diagnosis. Do you have a link please as I would be interested to read this?

I do know that hfa is still used by GOSH as they have or have had (I havent checked) a hfa unit for complex cases.

I agree

I have two dc in my family. One with very significant needs - will always require 24 hour personal care. And dd it’s so called HFA

I want two different diagnostic pathways in the DSM

The current set up doesn’t work

I think it is quite widely agreed that HF = normal to high IQ and LF = low IQ.

However, it does not have any bearings on how severe someone's ASD is and how well the person actually 'functions' in the world. It is in practical term pretty meaningless. It is just an additional IQ label for this on the spectrum.

@AgntOso I think the confusion is caused by the fact Aspergers and Autism merged for DSM V and as aspergics have “normal” to “normal plus” IQs it was used as short hand to describe them. This obviously isn’t helpful to HFA who aren’t Aspergic but let’s face it the merging of diagnostics descriptors was never in their interest. Very verbal HFA have dominated the autistic world for a decade. They are now seen as the “common” presentation of autism because frankly more classically Kanner style autistics are less intriguing and not able to contribute (on the whole) to public debate/discussion.

@5zeds, yes I complety agree. Youve managed to put that better than I have when I've tried in this thread. Thank you

If youre able to sit and discuss whether high functioning and low functioning are even a thing, youre high functioning.
The only people who dont believe in functiomong labels are generally high functioning who are likely self diagnosed.
Its throwing people with really significant difficulties and impairments under a bus imo, pretending that someone who can lead a full relatively independent lives have the same struggle

It’s fairly rare to be able to discuss autism without the conversation being almost entirely taken over by people who would not have fit the criteria before dsm v. It’s really cheered me up to read some push back on that. For those reading with experience of more traditional (Kanner/classic) autism, do you have places either virtual or real life where you feel heard?

Some people with autism can articulate the torture and experiences to some degree, and some non verbal people with autism and SLD are not as aware of their differences and have a better level of wellbeing and they personally don't feel as affected.. and in these cases it's often the parents doing the care 'work' that think their children are more autistic but that's a reflection on how they feel about their caring.. I hate this. As though the only discomfort experienced by autistics is “feeling different”. Infuriating.

This conversation is so interesting,I just wish people were not feeling hurt by some comments.

I have EDS, as does a young friend of mine. It is often found with autism, or vice versa. Anyway, it is a genetic collagen disorder. It is what it is and like autism has not ‘treatment’.

I am in late 59s, I can walk, albeit not far, my arms usually do what they should, I am faecally incontinent but can usually clean my self up and out my clothes in the washing machine. Pain is a huge limiting factor but on the whole life is manageable. My friend in her late twenties has the same genetic defects. She is unable to turn herself in bed, has a huge supportive electric wheelchair, needs help and a hoist to go to the loo. She has virtually lost all her teeth and is totally deaf.

My skin is worse than hers, she is constipated permanently, we both have POTS (a common comorbdiity).

The same genetic defect identified as EDS causes 98% of both our struggles and we are both struggling more as the months or years go by. However it is absolutely clear she needs more help than I! She needs more support and that support is different from that I need. But we have the same genetic defect. It is not unusual at all to have vastly different presentations of the same condition, someone mentioned MS up thread and that is another good example. Diagnoses or labels do not adequately describe a person, ever. They enable people with some knowledge to ask the right questions, look out for relevant issues and use knowledge gained from others to consider solutions.

My friend is also Autistic, as is her transitioning sister. Her sister has a little joint pain but is mute and the sensory and comprehension difficulties that are associated with autism are profoundly disabling in a social context.

I suppose I am trying to say, let go of the label a little. It is useful, it is sometimes a shorthand that helps communicate needs, it is not a way of defining an individual. I am so much more than a genetic disorder, as is my autism son.

@Yummyoldbag of course people are more than diagnosed conditions. I’m not sure how “letting go of the label” is helpful. How would we be able to treat/support if we cannot identify or follow outcome?

@Branleuse

If youre able to sit and discuss whether high functioning and low functioning are even a thing, youre high functioning. The only people who dont believe in functiomong labels are generally high functioning who are likely self diagnosed. Its throwing people with really significant difficulties and impairments under a bus imo, pretending that someone who can lead a full relatively independent lives have the same struggle

Not speaking for others, but the problem with the high-functioning label is the fact that it used to deny any support. It's not about whether one person has more needs than you do, it's that as soon as the high-functioning label is slapped on to you nobody thinks you could possibly need or warrant any help with your daily living. It's not the label I have a problem with, it's how it is being used and interpreted.

For all people have said on here that the face of autism is high-functioning activists, that has never been my reality. My reality has been near-constant discrimination, bullying and abuse, because people either refuse to believe you have a disability, take advantage of you, or bully you by startling you, triggering a meltdown etc.

Again, I'm not trying to speak for anybody else, or pretend I know what it's like to be anybody else. I just want others not to dismiss my experiences or needs on the basis of there being others with higher needs. I've said before that I have no idea how online groups present autism, I'm not part of any. I just wanted to explain how this condition can significantly affect my life too, without taking anything away from those who need 24/7 care. It's hard not to get defensive when people are telling you that you are essentially being a bit dramatic (I am aware that is not verbatim, I'm trying to explain how it feels).

I think I'm going to leave now as this thread is making me increasingly upset. I'm sorry you feel your child is being thrown under the bus.

@Burnedandbegone I think thats a seperate issue though. High functioning autistics are still autistic and its still a type of disability in many ways. There is social stigma and I agree that there are difficulties in high functioning experiences that are really significant with stuff like holding down jobs and general executive function issues and mental health. The fact that some people take this to mean we dont need support is a seperate issue. So many can live a really decent quality of life and enjoy loads of the things NT take for granted with some support, whereas someone with what would have used to be called Kanners autism will not be able to.

Sorry, the label is essential for research if nothing else! I was clumsily trying to Seay that ‘the label’ is rarely helpful in day to day life except as a shorthand explanation is some of the difficulties an individual might face.

For EDS the label means Consultants actually ask about how my skin heals which is very helpful, dentists ask if local anaesthetic works (it doesn’t) etc. The help I need to live independently is more to do with function...only one part of me.

Is that any clearer? Can I blame brain fog for my lack of clarity? 😂

So I am able to function well when it comes to doing an online shop, I can not function well in putting it away. I am neither high nor low functioning. Function is not me, it is something that can or can not be done.

I am neither high nor low functioning. you either have an IQ over 80 (given your input on the thread almost definitely, or you don’t.

the problem with the high-functioning label is the fact that it used to deny any support. It's not about whether one person has more needs than you do, it's that as soon as the high-functioning label is slapped on to you nobody thinks you could possibly need or warrant any help with your daily living. only if the term is misused and you are articulate. If the term is correctly used to describe your IQ then it is extremely useful for those unable to demonstrate their intellect and will be key to informing how support is delivered.

[quote AgntOso]@gvdlyfoib

stating that people arent all disabled to the same degree isn't belittling, its factual. It is likely offensive to you because you are jumping on everything I post to try to prove your argument.

I find it offensive that someone who is able to hold an argument on social media feels my sons disability isn't severe, he will never argue on social media.

Why do you find it difficult to accept that someone can be more disabled than you by autism?

I dont care if you call yourself autistic, it doesn't matter to me. Many people say they are autistic/ have autism, they do not have the same disability as my son.

@febbfad
if you go back and read my posts you'll see I actually said nv people dont always have pc needs and vice versa. I'm fully aware of the different presentations.

No I dont agree that the picture is a great way to depict autism, it is much easier to say my son has severe autism eg he has severe needs in every aspect of what that picture represents. Not just a few bits of it. He is profoundly affected. It may be useful for those who aren't profoundly affected to show the areas they are/ arent affected by for our family no, it's a hindrance to explain that he has classical/ low functioning/ severe/ profound autism. The kind originally described.[/quote]
I never denied that people aren't disabled to thr same degree or that your sons disability isn't severe. What I object to is you implying I do t have autism (because when you compare me saying I have autism to saying I am things that I am not, that's what you are doing), belittling my disability my claiming it is the same as losing a toe or needing glasses and repeatedly calling my diagnosis meaningless.

I do have the same disability as your son. Maybe not to the same level, but we are both autistic.

Personally I know that anyone with autism can be severely impacted and can see why H/F and mild autism is unhelpful but there is and will always will be a group that will all be severely effected. A group with an known outcome of needing lifelong care. It’s this group that will never be suitable for mainstream, independent living but have had their diagnosis changed to one which all that is possible.

Agreed @Boulshired and that group were already massively disadvantaged and now can add “no name” to their other difficulties in being seen/heard. This isn’t a victimless situation. It’s a tragedy.

@gvdlyfoib, yes I have said numerous times the dx is meaningless. I admit this but this is a generalisation 'the dx' is what I would tend to write or possibly 'my sons dx'. It is meaningless as it no longer accurately depicts his disability and many others. You cant google autism and get a accurate description of how it impacts everyone with the dx. This whole post started because someone needed a diagram to explain how they're affected.

To say someone has autism nowadays may not even be considered to say they have a disability; neurological difference, different not disabled. To have said it previously and It was taken as a disability and it was generally in a round about kind of way known what was meant even if Rainman was the goto.

Throughout this thread you have jumped on everything I have posted, you're first that addressed me was removed because you put something about me saying you should just die (I didnt).

I've tried to stay quite civil to you even though you've sworn at me because you have autism.

I used those comparisons because you wanted examples of other disabilities that can be separated by impact. Hearing and sight impairments are a disability. I also gave the learning disability dx as an example and arthritis. I also pointed out even the gov give levels to disability via pip and dla. The point was that you are clearly not as disabled by autism as those severely impacted. This was also following you me comparing autism to another condition because a poster compared autism to cancer and I pointed out that you didnt go after them.

If you go back and read what I have put throughout you'll find I've said that those with hfa should get support.

I doubt you do have the same dx. I actually dug out my sons ados report and looked at last night. Plus my son isn't autistic, he is so much more than that. He has autism. It's a horrible life destroying disability.

You're like a dog with a bone and I'm not going to agree with you.

The criteria states that the deficits must

limit and impair everyday functioning

It’s is obvious that those limits and impairments are not uniform and level across the autistic population. Suggesting that EVEN if you consider you are massively impacted by your diagnosed autism, that there might be some for who it is even more of an obstacle isn’t attacking your level if disability. The fact so many articulate autistics have never met or interacted with a less verbal and/or lower functioning individual and yet still feel able to make pronouncements on their experience and try to silence their lines of communication is sickening.

@Branleuse

If youre able to sit and discuss whether high functioning and low functioning are even a thing, youre high functioning. The only people who dont believe in functiomong labels are generally high functioning who are likely self diagnosed. Its throwing people with really significant difficulties and impairments under a bus imo, pretending that someone who can lead a full relatively independent lives have the same struggle

This.

My DS has high functioning autism. He's very bright, good company and had the potential to do well in life. You'd have to know him or autism well to suspect he has a diagnosis. (Like his grandmother, who used her autism to her advantage in her line of work and who was very successful in her career.) I have zero worries about things like him living independently, for example.

I wouldn't have the gall to tell a mother whose child was so severely affected by autism that she's worried about how they'll ever manage on their own, or who has difficulty connecting with people outside the family in any meaningful way, that my child is as affected as hers, only "differently".

It would comes across as massive self centredness on my part IMO.

That's not to say those who are high functioning don't struggle in ways that aren't at all obvious from the outside. But there needs to be a way to distinguish between those who are so severely affected they will need significant support to achieve the basics, day to day, for example and those who are only mildly affected in terms of day to day living. It's not helping anyone to pretend there's no difference and to try to ban words describing this difference.