... 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.

It’s the unintended consequences, that to stop the minimising of some with a diagnosis of autism they have removed the language that was helpful to others. Classic autism/ severe autism was a good fit for some children as their diagnosis matched their condition. Especially as it is these who are usually diagnosed at a very young age and can remain with the same diagnosis for years. Relying on the co morbidity for these children is difficult. An example would be SMI for high rate mobility. When the diagnosis does not match the threshold as it’s autism that masks the impairment even though the person matches the criteria. The decision makers do not have the knowledge and the diagnosis is a major factor. I can honestly say that it would be better for my child if he had not of been diagnosed with Autism as it has been a hindrance, it would have been better to have been diagnosed with a learning disabilities at the beginning but with autism that is not used by many paediatricians and we get global development delay.

Ds9 is autistic. Im in a group with lots of autistic adults. Tbh a lot of autism awareness has went out the window with this pandemic. I've seen such jewels as 'if people can't wear a mask them there must be something wrong with them and they shouldn't be allowed out in public' or people suddenly claiming their child is autistic and that because their child wears a mask all autistic children should be able to wear a mask.

@burnedandbegone the origin of the post was around a model of asc showingfluctuating needs and dismissing the spectrum ideal. The debate has mainly centred around the autism dx and levels of functioning/ labels etc with a main theme being that severe autism either doesn't exist because it is autism with learning disability or that those with hf Asc have the same disability as those with lf/ severe etc. I have been mainly involved in this discussion. You quoted my reply to another poster and addressed me and my thoughts on this.

I haven't made it a race to the bottom, I have said that what you experience as autism and what my son experiences should be different dx and previously likely were, if previously you'd have been diagnosed at all. This is based in fact. Yes you both do now have the same dx but my point is you probably shouldn't. Saying it's a race to the bottom is a way to dismiss the issues that come with differing levels of severity/ functioning. I won't shy from this because you've used this language. Should I not comment on the needs of those severely affected by autism because it points out that others needs are less?

My advocating doesn't negate his needs. I personally dont like the cancer comparison, but it does the job. Stage one has much better outcomes than stage three. Unlike autism someone with stage one cancer can progress through the stages whereas with autism you will stay at stage one my son at stage three.

I hope you get support, you clearly need it. I haven't said otherwise.

While your entitled to disagree with me you have to accept I disagree with you. It is odd/ perverse/ strange (pick one) that a married adult even with continence issues would actively seek to be labelled the same as my son. If you read the full thread you'll see this has always been my stance.

Even in your example of your vulnerability you show that you are able to recognise this My son and or others at the severe end wouldn't. This is the difference I'm trying to get across. Any mental health problems arising from unsafe situations is not autism though.

I have never said how your disability effects you, you're quite capable of doing that for yourself. I'm talking from my experience with my son, he can't debate how his disability effects him.

To use another comparison I often here (again i dont really like it) it's a bit like saying because you had a little toe removed the person who lost both their legs should be quiet for fear of upsetting them. Yes they have a disability but come on theres a difference.

Burnedandbegobe, you are entitled to help, you just might need to ask for it.

Access to work can fund coaching/equipment at work - google the government website.

Do you have a diagnosis? Contact the National Autism Society - their counsellors are wonderful amd will know exactly where to go for advice and guidance and help.

At work, you may be entitled to a slightly reduced time so you have time to deal with your bladder signals or lack of them - coaching, which can be funded by Access to Work - can help you come up witj schedules etc.

Is the doctor helping you with anything?

I was shocked after my own diagnosis how little "signposting" there is, it's like - "here you are, off you go".

You will be entitled to help from somewhere.

Seriously is that the only way you can debate this. @gvdlyfoib. At what point did I say you should have died?! Slightly dramatic and a bit of a leap.

Call yourself autistic, call yourself the queen or Michael Jackson better yet Judy Dench, she's good at drama. It doesn't change that the way you obviously present and the way my son and other sevrr people present is different. Why do you want the same dx? I wouldn't, I'd actively seek a different dx to clarify that my needs were less. I'd be glad to be called high functioning, I'd want people to know I'm capable. I'd want there to be clarity over the different presentations.

@gvdlyfoib

So married autistic people are perverse now for wanting to be called autistic, as well as diverting resources. Fucking great. Maybe I should have just died since our lives are apparently worth less than your son's.

People do express this sometimes, and equate autistic people "being able to cope" as lesser. You are entitled to help - to the parent who said resources are diverted, that's not what's happening, there are different budgets for different disorders, and also for adults separate to children

@AgntOso

Seriously is that the only way you can debate this. *@gvdlyfoib*. At what point did I say you should have died?! Slightly dramatic and a bit of a leap.

Call yourself autistic, call yourself the queen or Michael Jackson better yet Judy Dench, she's good at drama. It doesn't change that the way you obviously present and the way my son and other sevrr people present is different. Why do you want the same dx? I wouldn't, I'd actively seek a different dx to clarify that my needs were less. I'd be glad to be called high functioning, I'd want people to know I'm capable. I'd want there to be clarity over the different presentations.

How about that respecting that person's opinion? High functioning is not a clinical diagnosis so she she may well be upset, plus she is clearly distressed about her neuro diversity, maybe take a step back?

That she might wish for a different diagnosis is irrelevant, and as autism impairs effective connunication, gice her some slack on the words she is choosing

[quote AgntOso]@burnedandbegone the origin of the post was around a model of asc showingfluctuating needs and dismissing the spectrum ideal. The debate has mainly centred around the autism dx and levels of functioning/ labels etc with a main theme being that severe autism either doesn't exist because it is autism with learning disability or that those with hf Asc have the same disability as those with lf/ severe etc. I have been mainly involved in this discussion. You quoted my reply to another poster and addressed me and my thoughts on this.

I haven't made it a race to the bottom, I have said that what you experience as autism and what my son experiences should be different dx and previously likely were, if previously you'd have been diagnosed at all. This is based in fact. Yes you both do now have the same dx but my point is you probably shouldn't. Saying it's a race to the bottom is a way to dismiss the issues that come with differing levels of severity/ functioning. I won't shy from this because you've used this language. Should I not comment on the needs of those severely affected by autism because it points out that others needs are less?

My advocating doesn't negate his needs. I personally dont like the cancer comparison, but it does the job. Stage one has much better outcomes than stage three. Unlike autism someone with stage one cancer can progress through the stages whereas with autism you will stay at stage one my son at stage three.

I hope you get support, you clearly need it. I haven't said otherwise.

While your entitled to disagree with me you have to accept I disagree with you. It is odd/ perverse/ strange (pick one) that a married adult even with continence issues would actively seek to be labelled the same as my son. If you read the full thread you'll see this has always been my stance.

Even in your example of your vulnerability you show that you are able to recognise this My son and or others at the severe end wouldn't. This is the difference I'm trying to get across. Any mental health problems arising from unsafe situations is not autism though.

I have never said how your disability effects you, you're quite capable of doing that for yourself. I'm talking from my experience with my son, he can't debate how his disability effects him.

To use another comparison I often here (again i dont really like it) it's a bit like saying because you had a little toe removed the person who lost both their legs should be quiet for fear of upsetting them. Yes they have a disability but come on theres a difference.[/quote]
Just read thus- how dare you accuse her of trying to hijack your son's diagnsis! Autism is autism in its many forms, how dare you belittle anyone about her disability amd say "call yourself autistic if you want"!

@AgntOso

Seriously is that the only way you can debate this. *@gvdlyfoib*. At what point did I say you should have died?! Slightly dramatic and a bit of a leap.

Call yourself autistic, call yourself the queen or Michael Jackson better yet Judy Dench, she's good at drama. It doesn't change that the way you obviously present and the way my son and other sevrr people present is different. Why do you want the same dx? I wouldn't, I'd actively seek a different dx to clarify that my needs were less. I'd be glad to be called high functioning, I'd want people to know I'm capable. I'd want there to be clarity over the different presentations.

I don't just call myself autistic, I am autistic. Because my symptoms may be different than other autistic people doesn't make me less so. And I was diagnosed as such when I was young because of my difficulties, I didn't rock up to a clinic and say ' I want to call myself autistic, give me a diagnosis.'

gvdlyfoib, exactly.

I do urge you if you feel it would help, for yourself, speak to the national autism society, and for work related help, Access to Work. I thought neither would make a difference to me but I was wrong. Also the NAS do courses for autistic women

@AgntOso

Seriously is that the only way you can debate this. *@gvdlyfoib*. At what point did I say you should have died?! Slightly dramatic and a bit of a leap.

Call yourself autistic, call yourself the queen or Michael Jackson better yet Judy Dench, she's good at drama. It doesn't change that the way you obviously present and the way my son and other sevrr people present is different. Why do you want the same dx? I wouldn't, I'd actively seek a different dx to clarify that my needs were less. I'd be glad to be called high functioning, I'd want people to know I'm capable. I'd want there to be clarity over the different presentations.

There is clarity and that is between the clinician and the patient. Sorry that the term autism is too broad for you to wrap your mind round. And high functioning implies "she's ok let her get on with it, it's only a bit of autism" which is discrimination

It is like a colour map! My son has "mild" autism but needs Band 1 funding to stay in mainstream school. He presents so normally on occasion that it takes someone with a deep understanding of autism to make it work in that setting. Too often have people said oh but he can do stuff. Thats why I hate "high functioning". It diminishes the needs of kids that need support.

I don't need extra support at home because I can manage. I think some people think that because I can, he isn't autistic. That's simply not true.

I stand by the phrase "You've met one autistic person then you've met one autistic person"

Yep. And I don't even try to define my son's autism spectrum to anyone anymore. It's hard work, giving sight to the blind.
But thank you, OP, for a proactive, meaningful, and positive post.

The problem I have with removal of the word severe is people assume......

A knows friend with autism can talk, is clever at x y z went to uni etc...... so how come my friend cannot do those things...cannot talk, look after herself, needs 24 hour care.....

The word severe helps the ones like second individual gain more help than the first individual who doesn't need it....not all the same at all

It’s not the sharing of the umbrella of autism it’s the removal of classic/severe/ low functioning and using co morbidity to show need, when it’s the autism presentation that masks the other co morbidities leaving children with a woeful description of their medical diagnosis. Until DS2 was 10 his diagnosis was ASD, global development delay and language and communication difficulties. Non descriptive and in no way helpful to describe a severely disabled child.

Kids need bands of help that are not so black and white.

"High functioning" doesn't mean you get the lowest band of support.

"Low functioning" (I hate that term) doesn't mean they can't talk etc

Its dependant on the best outcome for the child

I think that's where the understanding of a colour map comes in. Throw some support at the specific issues rather than a blanket approach

@redpencil77

High functioning is a term that has been used a lot. Historically it has been used to distinguish presentation....this has already been discussed in this thread earlier.

Don't be sorry for the term autism being too broad, I agree, it's a problem. I'm sorry

At what point did i say anyone hijacked a dx?

On ths funding issue, I don't think I've raised although could have much earlier in the thread. Funding is being diverted and allowances (for disability not cash) are being reduced for those with more severe needs because of the portrayal of higher functioning/ more able/ less severe people with dx pushing for their adaptations. Eg my son is too severe for autism sessions as these are for children who are verbal/ toileting etc not classic or severe. There are also those who now champion that autism is a neuro diversity and not a disability so funding is reduced. While funding may be sperated into adult child it is still diverted.

The truth is if we do revert to different dx those with less needs would likely lose out. This wont ever happen as these are the most vocal group by nature of the disability.

Again this isn't about removing the dx but going back to separate dx which reflect the person diagnosed. The dx is now too vast, its meaningless in many ways.

i was generally told they tend to use just Autism and then add verbal/non verbal on, but even that is problematic. Some are verbal, but have selective mutism... they'll talk the hindleg off a donkey at home, but wont say a peep to anyone other than family... or they talk, but its running commentary or conscious thought stream, or echolalia, and you can't have an actual functional conversation with them.

We have a lot of autism in the family, i've family who outwardly 'function' in having a job, marriage, kids, but struggle with depression and social difficulties at work... then have others who need constant support to live day to day, but are the most intelligent, bright, cheery individuals who everyone loves as they're just funny/silly. Then there are those who're generally socially fine, but strongly affected by other co morbids.

NT folk need to be taught AT SCHOOL that the spectrum is a wheel, not a line.

[quote AgntOso]@redpencil77

High functioning is a term that has been used a lot. Historically it has been used to distinguish presentation....this has already been discussed in this thread earlier.

Don't be sorry for the term autism being too broad, I agree, it's a problem. I'm sorry

At what point did i say anyone hijacked a dx?

On ths funding issue, I don't think I've raised although could have much earlier in the thread. Funding is being diverted and allowances (for disability not cash) are being reduced for those with more severe needs because of the portrayal of higher functioning/ more able/ less severe people with dx pushing for their adaptations. Eg my son is too severe for autism sessions as these are for children who are verbal/ toileting etc not classic or severe. There are also those who now champion that autism is a neuro diversity and not a disability so funding is reduced. While funding may be sperated into adult child it is still diverted.

The truth is if we do revert to different dx those with less needs would likely lose out. This wont ever happen as these are the most vocal group by nature of the disability.

Again this isn't about removing the dx but going back to separate dx which reflect the person diagnosed. The dx is now too vast, its meaningless in many ways.[/quote]
Why should we lose out? Why would that be a good thing?

And I never said you want me dead. But you are advocating for removing the support that saved my life, because I'm not worthy of being called autistic and have "less needs" because I can write a sentence, regardless of anything else. It's fucking insulting.

@AgntOso

"To use another comparison I often here (again i dont really like it) it's a bit like saying because you had a little toe removed the person who lost both their legs should be quiet for fear of upsetting them."

Wow. This might be the most offensive thing I've read all day.

"Unlike autism someone with stage one cancer can progress through the stages whereas with autism you will stay at stage one my son at stage three."

This is not true. Your son may stay at stage three and I will stay at one, but my functioning has declined over the years to the point where I am now at risk of no longer being able to work. Unsupported autism often leads to the development of MH issues, which can in turn exacerbate autism difficulties. Yes, my autism has not gotten 'worse', but my care needs have increased.

Getting diagnosed is nothing if you don't have people around you fighting for your care when you are young. My parents were not able to do that for me. I'm glad your son is luckier in that regard, and I am not saying that as some sort of attempt to make myself into a victim, it is genuinely good to hear.

@Yummyoldbag My problem is that even if I had the money, I'm not really able to use it. I fall at the first hurdle because I would have to organise my own support to support me in trying to get the right care so to speak. I can talk about things quite well on here, but it is a very different story in real life and so I can't really do any of this. I don't understand what I am doing wrong really. When I go to the doctor and try to say something they either dismiss me or look at me as if I am some sort of alien. I don't know how to fix that. I don't understand certain things and it is exhausting and humiliating. I can answer questions when asked or respond to what others have said in situations like on here, but in real life it doesn't work that way. They ask you way more vague questions that don't mean anything to me and I can't ask because people get really impatient really fast. 'Surely you understand what I am asking you?' is a question I hear a little bit too often. I sometimes literally cannot hear people when they talk to me, but apparently my hearing is fine. I tried writing a letter, but the reply was that there's nothing they can do and maybe I should try and get outside more to help with my mood. There was nothing wrong with my mood though.

@AgntOso I would love to see some of this diverted funding you keep mentioning. I haven't received a penny of support since I was born. I'm pretty sure the money is given to nobody at the moment.

I didnt raise the funding but spoke out about it because it was mentioned in a post I was named in.

@gvdlyfojb broadly aspergers was included in the asd dx fortwo reasons 1) theassociation ofAsperger with the Nazis 2) the lack of funding and support for Aspergers as opposed to autism. By separating the dx again the same is likely to happen. I never said this was a good thing in these terms. It is a good thing that the dx is separate.

@gvdlyfojb
And I never said you want me dead. But you are advocating for removing the support that saved my life, because I'm not worthy of being called autistic and have "less needs" because I can write a sentence, regardless of anything else. It's fucking insulting.
Your post was removed, you said something along the lines of o should just die then or similar. Yes you do have less needs related to your autism. I am not advocating removing support I am advocating separating the dx. Be as insulted by that as you want. I haven't said you cant be autistic ive said you're autism isn't as severe. Call yourselfwhatyou want. This is the problem, the dx is now meaningless

@Burnedandbegone

I don't understand certain things and it is exhausting and humiliating. I can answer questions when asked or respond to what others have said in situations like on here, but in real life it doesn't work that way. They ask you way more vague questions that don't mean anything to me and I can't ask because people get really impatient really fast

Read up on Executive Function, Working Memory and Processing Speeds. Tests for those can identify which areas you have difficulty with and which you need help with.
There should be some way of you being tested and scored for this, no doubt privately, do have a look at the NAS Services Directory and see if any of their assessors can help you to identify and understand the problems you have in these areas.

Surely you understand what I am asking you?' is a question I hear a little bit too often

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.

Have you read this account of the autistic spectrum?
neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

The one thing that stood out for me on reading your post was
Don’t assume that a fluently-talkative autistic person is capable of processing what you have just said to them

Please do look for help, there will be some available, it's just finding it that's the difficult part.