... 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.

@Wearywithteens

“That's because whoever is asking is assuming you are NT and can communicate like an NT person, but you can't as you have autism. It really isn't any fault of yours, it's their ignorance.”

I fully accept that I’m ignorant about autism and this thread has been so illuminating and helpful. Thank you OP. However I’m still unsure about how daily interactions can not be fraught with misunderstandings and difficulties if you’re saying there are as many presentations of autism as there are autistic people! And that’s not including other people who are anxious or find social interaction difficult... What can NT randoms do to make everyday interactions and social discourse easier and less frustrating for those with ASD?

Do as you are doing - get educated, educate others, be the NT who stands up for the neurodiverse when words won't come, and say, "she's just finding her words" "she's jyst thinking about that", "it's too noisy/bright" for her all at once, give her a bit of time and she'll get back to you".

Or an ear, or shoulder.

And thank you for wanting to.

@febbfad

burnedandbegone my experiences are so very similar to yours I almost can't believe it as i'm reading through your posts. Hopefully not sounding creepy but I wish i knew you or someone similar IRL. I find it very isolating suffering from autism in the same way you describe and also having no support.

In response to the thread generally, the psychologist I saw told me "everyone is a bit autistic" and they "had experience with people who are non verbal and headbang" in reference to them considering me as not requiring any support (i'm not verbal most of the time and an appointment can cause me distress for days or weeks and prevent me from functioning in any other area so is no reflection of my abilities). They stated I couldn't get a diagnosis without my parents providing information, but as with many older adults, my parents aren't around to fill in forms about me. I was told to put myself on a timetable to manage my PDA and difficulty with EF, washing, dressing, eating etc. As if it was that simple and as though I hadn't thought of that 30 years ago. Needless to say it was an awful experience in trying to get understanding and support for lifelong difficulties, and this notion of high/low functioning is harmful in these situation. Having intellectual ability doesn't prevent one from major dysfunction and inability to cope with life due to autism. Like PP you can be verbal at times but still profoundly affected by autism and the color wheel could help people understand that. I like the image of the color wheel with the spikes or dots all around it, placed to show the different levels of difficulties in all different areas of autism. Whilst untrained people might think having poor receptive and expressive communication is the only thing that qualifies for an autism diagnosis, a simple color wheel can highlight the reality of autism and that there are many other factors than can be a severe difficulty.

I also understand PP regarding someone who might have once been diagnosed with classic autism and being non verbal and using nappies actually being just as autistic as someone with different needs. I think it might be somewhat linked to the experience of the autistic person and of their mental wellbeing. 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. The diagnosis of ASD is for the person who has it, not the impact on others, and each person with ASD is entitled to their diagnosis, regardless of how other non autistic people feel about it.

Yes, exactly. Every autistic person is different amd their diagnosis is specific.

To the person who said she can get no help for Asperger's - try Access to Work for an analysis of your work situation and any adjustments your employer can put in place for you. You are entitled to this under the Equality Act - you can apply for this here:

www.gov.uk/access-to-work

I've always found the idea of the spectrum being viewed as a linear line (HF/LF) problematic. It presupposes the person has universal levels of skill/weakness across all areas of development, which is a nonsense for all people (neurodiverse or otherwise.) My son is incredibly gifted at visual recognition and was sight reading the names of local destinations on buses and train timetables since he was in preschool. But he also has huge speech and language issues so still struggles massively with reciprocal conversation. Is he high-functioning? Low functioning? How can you 'grade' such differing levels of ability?

@redpencil77

"You said "call youraelf autistic" implying that she was calling herself autistic with no basis behind it, as if she could call herself anything but didn't mean she was."

No the implication was that I don't care what she calls herself, it makes no difference because the dx is meaningless. This is the point.

"I mean, we now have a generation of young adults catching measels, because struck off doctor Andrew Wakefield managed to publish a report that the MMR caused autism

That's all you need to know about the parents of those children: that they believed so strongly this was true (this was off the back of the BSE in beef in the 90s and trust in the government was low) that they would rather let their children catch measels, mumps or rubella than develop autism"

Actually my son has had the mmr however If it was a straight choice of getting one of them and maybe having a severe reaction or having a severe disability his full life, I'd probably risk it. Just to be clear I dont believe the mmr causes autism, this is hypothetical. So yes I understand why those parents made that decision.

That being In the 90's when autism was more seen as being severe because of the dx, I dont blame them. Hf/ aspergers wasn't dx to the extent it is today. Autism was seen as severe, now it isn't. This is the point I'm making the dx is now not reflective of everyone with it.

I would remove my sons autism if I could, it isn't even something I have to think about. I'd do it in a heartbeat. Any parent would actively choose to remove a disability.

@movingonup20

I don't actually agree completely, my dd is autistic, has specific challenges and is currently in my care (she's an adult, alternative is supportive living). My exh is not diagnosed as autistic but definitely has traits, and his own psychiatrist told him he was on the neurotypical side of the line that divides autism from the rest of us. My dp also shares some traits as does his dd, but not as many as exh. I really observe it as a continuum, my dd has given lectures on this!

I agree with this. My DH has been told he has, at least, “sub threshold ASD”. This was during an assessment for another issue with a respected ASD specialist psychiatrist and is written into the report. It’s not a clear case of having autism or not. Autism is not a single gene, it is likely hundreds of genes and different genes on different people. In fact it’s probably different conditions for some people but we don’t understand enough to differentiate.

I have traits and have had a tough time socially, getting it wrong and not knowing why for example. Our DD has ASD more so than DH, so it’s possible we both have genes that contributed to her being autistic enough to hit the threshold for diagnosis.

I also dislike the policing of language to describe our selves or our relatives. I feel very fortunate DD is getting on well academically and could lead an independent life with the right support as she grows up. Compared to many other autistic kids my DD is mildly affected. I even left a support group because the other kids made her seem completely typical. If parents of more disabled kids want to describe them as severely affected, who am I to tell them how to describe their lives.

@Potnia yes this reflects my experience of CAMHS describing my son as having autistic traits.

@AgntOso

Just for clarity it wasn't me that made the cancer comparison.

Do you know what though it mauinimaise hfa in comparison to profound that's the point.

So why isn't your minimalising HFA ableist whereas someone else apparently doing the same with LFA is?

For goodness sake. I'm only back because I keep getting bloody emails.

The DSM gives us the diagnosis. We are told by a professional what our diagnosis is. This is not our fault. If you don't like that your children have the same diagnosis as someone like me then lobby the American Psychiatric Association to change it in DSM 6. Don't have a go at autistic people. We are autistic as currently that's what the diagnostic criteria says.

I feel like Mumsnet need to do some pruning in this thread.

@gvdlyfoib you're going on about my reply to the below, just read it.
"also understand PP regarding someone who might have once been diagnosed with classic autism and being non verbal and using nappies actually being just as autistic as someone with different needs. I think it might be somewhat linked to the experience of the autistic person and of their mental wellbeing. 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. The diagnosis of ASD is for the person who has it, not the impact on others, and each person with ASD is entitled to their diagnosis, regardless of how other non autistic people feel about it"
@bitheby, is that aimed at me by chance? I haven't had "a go" at anyone. I've been discussing and expressing opinion. If you don't want to take part, don't. No one is forcing you to.

Is there actually a true and objective demarcation separating people with and without autism?

@Floatyboat

Is there actually a true and objective demarcation separating people with and without autism?

No. It's subjective but there are ways to assess and test whether someone meets the threshold but there's nothing objective like a blood test. This argument is about people who are diagnosed with autism but present differently and whether those people should have the same label. And that's not up to us with the diagnosis.

[quote AgntOso]@gvdlyfoib you're going on about my reply to the below, just read it.
"also understand PP regarding someone who might have once been diagnosed with classic autism and being non verbal and using nappies actually being just as autistic as someone with different needs. I think it might be somewhat linked to the experience of the autistic person and of their mental wellbeing. 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. The diagnosis of ASD is for the person who has it, not the impact on others, and each person with ASD is entitled to their diagnosis, regardless of how other non autistic people feel about it"
@bitheby, is that aimed at me by chance? I haven't had "a go" at anyone. I've been discussing and expressing opinion. If you don't want to take part, don't. No one is forcing you to.[/quote]
Yes, I read it. Doesn't make your own minimalising any better.

@gvdlyfoib yet you're only quoting me and finding fault with my remarks even though you admit the other poster has minimalised also. Is you're problem with the minimalising or what I'm minimalising? I'm guessing the latter given your previous posts? If so why not just say you dont like me pointing out that some people with autism are less affected?

In regards to this discussion if you look at the original post you'll see that they said something along the lines of terms like mild and severe are unhelpful. There was conversation around this I and some others find these terms helpful, mainly those caring for people with severe autism. Those who wouldn't be classed as severe dont like the implication that their autism is mild. Separate dx came about as a way of countering the disagreement. My sons dx is severe autism not autism or asc or asd.

[quote AgntOso]@gvdlyfoib yet you're only quoting me and finding fault with my remarks even though you admit the other poster has minimalised also. Is you're problem with the minimalising or what I'm minimalising? I'm guessing the latter given your previous posts? If so why not just say you dont like me pointing out that some people with autism are less affected?[/quote]
What I don't like is you acting like high functioning autistic people don't count as autistic, that our difficulties aren't bad or don't matter and that any lack of support or funding for your son is somehow our fault. If you tried to minimalist any other disability on the grounds that some people arguably have it worse I don't that would be able to stand, but here you're allowed to spout ablist bullshit and then accuse others of ablism.

Thank you, OP. The rainbow wheel has made a bit clearer the jumble of thoughts I have when I think about ASD.

@gvdlyfoib "What I don't like is you acting like high functioning autistic people don't count as autistic, that our difficulties aren't bad or don't matter and that any lack of support or funding for your son is somehow our fault. If you tried to minimalist any other disability on the grounds that some people arguably have it worse I don't that would be able to stand, but here you're allowed to spout ablist bullshit and then accuse others of ablism."
What utter crap, I've said repeatedly that people who need support should get it. I've said organisations like #aa are at fault aaas they only want the opinions of hf to be considered and not those of lf, I've said that this is what is happening as due to the nature of the disability those who are verbal are able to be more vocal, I've stated that the dx is now meaningless because it's so vast and that it doesn't represent my child any longer. I didnt raise the funding issue although I did comment to say hf would come off worse if it was split because they dont appear as disabled. Autism was originally split, the dx now encompasses many presentations it didnt previously. I haven't ever said others dont matter. I've just not stood by and agreed that everyone with autism has the same level of need and pointed out that some people are severely affected. Some peoples autism does effect them very minimally like some people's effects them severely. Some people have hearing loss in one ear some are deaf, some people wear glasses others cannot see, some people have mild learning disability some have the dx of pmld, some people have mild arthritis others cannot move with pain. Even the government allocates pip and dla on how badly disability affects the person, giving them a level. That isn't ableist or bullshit, you just dont like it.
I posted a very good article on ableism within the autism community, it maybe worth you having a read.

@gvdlyfoib "What I call myself is irrelevant. I am autistic. And my diagnosis is not irrelevant. Why the fuck do you think you know better than the people who diagnosed me?"

That's a bit of a random attack when I clearly state I don't what you call yourself, it doesn't matter, that's the point.

No where did I refer to people who are happily married and able to independently maintain a typical working life. I said autism can still be severe without being completely non verbal and needing a carer to change nappies, and it's uninformed and can be harmful to think otherwise. People inserting all kinds of assumptions of anyone outside of those needs just shows how biased they are. Some people are unaware of all the other profound difficulties that autism causes and this is demonstrated by their misunderstanding and mislabelling of people as 'high functioning' when they have no idea what those people's lives are actually like. The stereotype of smart and quirky still very much exists and it's those assumptions that lead to suicide as the depths of suffering are misunderstood and ignored. Having an autism rather than aspergers diagnosis may help improve things as it more accurately contains the full spectrum of difficulties that individuals have. Such strong opposition to those who express their struggle is cruel. People who have some communicative ability can still be severely autistic. There are many people that are severely autistic who happen to not have those 2 particular aspects but lots and lots of others and they too are severely autistic and as such have the same diagnosis. The color wheel is a good way to show this for people who minimize just because the autistic person doesn't have a particular difficulty in the format the minimizers like to qualify as severely autistic (as though it's a linear scale when it isn't).

[quote AgntOso]@gvdlyfoib "What I call myself is irrelevant. I am autistic. And my diagnosis is not irrelevant. Why the fuck do you think you know better than the people who diagnosed me?"

That's a bit of a random attack when I clearly state I don't what you call yourself, it doesn't matter, that's the point.[/quote]
Then why bring it up, or compare it to be calling myself something I'm not?

[quote AgntOso]@gvdlyfoib "What I don't like is you acting like high functioning autistic people don't count as autistic, that our difficulties aren't bad or don't matter and that any lack of support or funding for your son is somehow our fault. If you tried to minimalist any other disability on the grounds that some people arguably have it worse I don't that would be able to stand, but here you're allowed to spout ablist bullshit and then accuse others of ablism."
What utter crap, I've said repeatedly that people who need support should get it. I've said organisations like #aa are at fault aaas they only want the opinions of hf to be considered and not those of lf, I've said that this is what is happening as due to the nature of the disability those who are verbal are able to be more vocal, I've stated that the dx is now meaningless because it's so vast and that it doesn't represent my child any longer. I didnt raise the funding issue although I did comment to say hf would come off worse if it was split because they dont appear as disabled. Autism was originally split, the dx now encompasses many presentations it didnt previously. I haven't ever said others dont matter. I've just not stood by and agreed that everyone with autism has the same level of need and pointed out that some people are severely affected. Some peoples autism does effect them very minimally like some people's effects them severely. Some people have hearing loss in one ear some are deaf, some people wear glasses others cannot see, some people have mild learning disability some have the dx of pmld, some people have mild arthritis others cannot move with pain. Even the government allocates pip and dla on how badly disability affects the person, giving them a level. That isn't ableist or bullshit, you just dont like it.
I posted a very good article on ableism within the autism community, it maybe worth you having a read.[/quote]
My diagnosis allowed me to understand my condition and access support. It is not meaningless.

And people with HFA who are able to communicate can still have I affect them in severe and life-changing ways. That's why they have autism diagnoses, they don't just give them out willy-nilly, your life needs to be impacted in some way. It's not like losing a toe or needing glasses.

[quote AgntOso]@gvdlyfoib "What I don't like is you acting like high functioning autistic people don't count as autistic, that our difficulties aren't bad or don't matter and that any lack of support or funding for your son is somehow our fault. If you tried to minimalist any other disability on the grounds that some people arguably have it worse I don't that would be able to stand, but here you're allowed to spout ablist bullshit and then accuse others of ablism."
What utter crap, I've said repeatedly that people who need support should get it. I've said organisations like #aa are at fault aaas they only want the opinions of hf to be considered and not those of lf, I've said that this is what is happening as due to the nature of the disability those who are verbal are able to be more vocal, I've stated that the dx is now meaningless because it's so vast and that it doesn't represent my child any longer. I didnt raise the funding issue although I did comment to say hf would come off worse if it was split because they dont appear as disabled. Autism was originally split, the dx now encompasses many presentations it didnt previously. I haven't ever said others dont matter. I've just not stood by and agreed that everyone with autism has the same level of need and pointed out that some people are severely affected. Some peoples autism does effect them very minimally like some people's effects them severely. Some people have hearing loss in one ear some are deaf, some people wear glasses others cannot see, some people have mild learning disability some have the dx of pmld, some people have mild arthritis others cannot move with pain. Even the government allocates pip and dla on how badly disability affects the person, giving them a level. That isn't ableist or bullshit, you just dont like it.
I posted a very good article on ableism within the autism community, it maybe worth you having a read.[/quote]
Still belittling people's disabilities by making offensive comparisons.

@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.

Thank you for sharing awareness.

My son has ASD. My family whilst accept the formal diagnosis, don't believe me when I said the paediatrician wouldn't classify him as 'mild' or 'severe'. My mum especially keeps on because she wants me to say he's only 'mild'.