... 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.

[quote AgntOso]@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[/quote]
You said me calling myself autistic is akin to calling myself the queen or something I blatantly am not, so yeah you said I'm not autistic. It's not about what I call myself it's about what I am, and anything that contributes to suicide is pretty fucking severe I'd say. If it wasn't for my diagnosis I wouldn't have got the support I need and I would either be dead or unable to function. Who the fuck are you to call it meaningless?

I am autistic, just as much as your son or anyone else. It is a condition that I was diagnosed with by professionals, who know a bit fucking more about it than you thank you very much.

@gvdlyfojb 1) I didnt say you were like the queen, I said you can call yourself whatever you want even the queen if you want or michael jackson or Judy dench even as shes dramatic too or similar. Dont twist my words.
2)I didn't say you weren't autistic.
3)the dx is now meaningless as it means so many different things to different people. It has no clear meaning, hence the initial post.
4) yes professionals diagnosed my sonas being severe years ago. I'd say they know more about his autism than you do.
5) you're mental health while contributed to by lack of support for your autism isn't autism. I do hope you get some help with that.

[quote AgntOso]@gvdlyfojb 1) I didnt say you were like the queen, I said you can call yourself whatever you want even the queen if you want or michael jackson or Judy dench even as shes dramatic too or similar. Dont twist my words.
2)I didn't say you weren't autistic.
3)the dx is now meaningless as it means so many different things to different people. It has no clear meaning, hence the initial post.
4) yes professionals diagnosed my sonas being severe years ago. I'd say they know more about his autism than you do.
5) you're mental health while contributed to by lack of support for your autism isn't autism. I do hope you get some help with that.[/quote]
You said "Call yourself autistic, call yourself the queen or Michael Jackson better yet Judy Dench, she's good at drama." I am not the Queen, MJ nor Judy Dench so the implication is I'm not autistic regardless of what I call myself.

Like your son, I was diagnosed by professionals. If the diagnosis was meaningless they wouldn't use it. It also wouldn't be necessary to get support.

And I have no idea what you mean by you're mental health isn't autism'. My mental health has been poor in the past and still often is as a direct result of my autism. What helped was getting support from people and services designed for autistic people. Because I am autistic.

Thay support would not be available if it wasn't for my diagnosis. And you want the diagnosis taken away because you think, for some reason, I can't fathom, it takes away from your son.

"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."

It's more like you're saying to people who lost a leg they shouldn't have access to wheelchairs because people who lost both legs have it worse.

But comparing it to having lost a toe fits in more with your agenda of minimising other people's disabilities, doesn't it?

@gvdlyfoib no I dont want your dx taken away, i want it separate to my sons; different. So that his dx reflects his disability. Just saying autism isn't an accurate description. He needs more than the adaptations and support offered for autism now because of the vast array of people it includes. I dont care what support you get but you must realise that the support you need is different to what he needs and others who are severely affected.

As for the analogy a previous poster has used cancer stages, I dont feel that is better. Yes it does minimalise that is the point to show that it terms of severity some people have more severe autism than others. Not all disabilities are equally as disabling.

Why do you find it difficult to accept that there maybe a need to distinguish between those with severe/ classic autism and those who are more affected in their mental health or those who can function in many more areas of their lives? Especially when this will help those with greater needs? Are you worried it'll diminish how people view your dx in some 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?

What do you mean? Are you talking about any interaction you might have in the wild with someone who may or may not be autistic? Ordo you mean something more specific?

I don't get what random neurotypicals are. If you were speaking to me specifically, I could ask you to not use abstract language. There is no way you could know that unless I tell you that though, and what I find difficult is not necessarily what others struggle with.

In general, don't presume what someone is or isn't able to understand based on your own ideas of how people function? You can't exactly go around having rehearsed 5000 sentences of what to say to a person you meet in case they are autistic. Though funnily enough that is very close to how I communicate. I used to even practice in front of a mirror to try and get my face into the right shape. I still look like I walked out off the set of iRobot though, apparently.

Wearywithteens

This is a very general overview for communication.

Instructions can cause a huge amount of misunderstanding. Remove all except the words you mean. Don't waffle. Don't insinuate. Don't hint. Don't infer. Don't be sarcastic. Don't say one thing when you really mean another. Don't use facial expressions or body language to alter the meaning of your words.

Think really, really carefully about what you are saying, concentrate on the words you will be using. Literal interpretation can be a massive problem for some people with autism in interactions with NT people.

If you say "The bin needs emptying" to an NT person they will infer from your tone that you expect them to carry out that task.

If you say "The bin needs emptying" to an autistic person, they may agree with you or ignore you because all you have done is state a fact. You have not specifically asked them to do anything about it.
Sometimes, they won't even register you were speaking specifically to them if you didn't use their name first.
"Could you empty the bin?" is also ambiguous.
As is "Name, could you empty the bin?"

You need to be more direct and straightforward.
"Name, please could you empty the bin right now?"

There are loads of videos on youtube about how difficult autistic people find the NT world. I like Purple Ella's explanations of trying to navigate the NT world as an autistic adult and parent of autistic children. There are presenters of all ages, try different ones until you find someone you can relate to.

Give single instructions only until you are sure the person can carry out two or three step instructions.

Read and watch as much as you can about how to communicate with neurodiverse people.

Emotionally, ND children and young adults can present at around two thirds of their chronological age, so in your own mind, stop thinking 'At your age you should' or 'You are old enough to know better' because very often, they may not be at all.

Read up on Social Communication, Sensory Processing, Executive Function and Processing Speed so you have an inkling of the struggles ND people have in the NT world.
Ask for autism training for your firm if that's appropriate.

Thank-you for wanting to make a difference

I think that unfortunately, like many things in this world, "funding" ie money is the issue at the bottom of the high/low argument. Not in the sense of accumulating money, but the "buying" of care and support for others to live. The difficulty lies when people in need have to compete and persuade those in power that they are in need of help. This happens when allocating aid , funding medicines etc. I think that when parents that are bringing up children that would have once been described as low functioning see changes to wording, they know, in the back of their minds that this is the beginning of redistribution of funding. They don't think that other people are necessarily unworthy of funding, but just that the NT in power will not simply accollate more money, rather that the balance will be shifted, and therefore feel worried about an uncertain future for their children. Likewise, high functioning adults, should of course be able to put forward their experiences and needs to raise awareness of all the issues that in the past have been unseen. It shouldn't be the case of one side against the other but ....

The low/ high etc Is more than funding for me. Autism used to be seen as by the majority as a disability and although people did cruelly mock, it wasn't previously a mainstream excuse. I am not saying that everyone dx is using it as an excuse, please do not read that into my comment. I'm referring to comments like "is he on the spectrum" in social media when a child has a melt down, on orange is the new black "she has a touch of the isms" etc people who self diagnose for whatever reason, the casual "oh everyone is a bit on the spectrum". The dx has lost it's meaning for those who are low/ severe/ classic we can't say to people google autism and an accurate portrayal of our family come up. We've been turned away from autism specific groups because my son is too autistic. The voices of those who are high functioning are bound to be louder and more coherent than those who are severe by nature of the disability. It feels as those those with severe needs are now no longer considered in autism specific policy for fear of upsetting those higher functioning who dont associate with that form of autism. Groups like actuallyautistic dont reflect my son because they've never lived his experience but it is their experience which is being considered. The article I posted earlier from psychology today will probably explain this better than I have.

On the other hand, people like me, who would have received an Asperger's diagnosis are in a weird limbo whereby we're expected to manage independently without support and yet struggle with that.

I work full time, which isn't really something that I cope with (hence being on Mumsnet now to decompress); try to manage a house by myself; manage all my finances and personal admin.

Yes, strictly speaking I can do all of these things individually but in combination, they are beyond me.

Yet, am I autistic enough to be seen as in need of support? Not really.

@bitheby

On the other hand, people like me, who would have received an Asperger's diagnosis are in a weird limbo whereby we're expected to manage independently without support and yet struggle with that.

I work full time, which isn't really something that I cope with (hence being on Mumsnet now to decompress); try to manage a house by myself; manage all my finances and personal admin.

Yes, strictly speaking I can do all of these things individually but in combination, they are beyond me.

Yet, am I autistic enough to be seen as in need of support? Not really.

I wonder where the magical unicornland of autism funding and support actually is, because going by this thread, everyone is either too autistic or not autistic enough to get the help they need.

If someone knows, please share.

The dx has lost it's meaning for those who are low/ severe/ classic we can't say to people google autism and an accurate portrayal of our family come up. We've been turned away from autism specific groups because my son is too autistic. The voices of those who are high functioning are bound to be louder and more coherent than those who are severe by nature of the disability. It feels as those those with severe needs are now no longer considered in autism specific policy for fear of upsetting those higher functioning who dont associate with that form of autism. Groups like actuallyautistic dont reflect my son because they've never lived his experience but it is their experience which is being considered.

completely agree. This is our experience too

the casual "oh everyone is a bit on the spectrum"
This is exactly why the OP started this thread, to show how this misconception of what "spectrum" means can be damaging because lay people read it as being a sliding scale of almost NT at one end through to severely autistic at the other but that's not what medical experts mean by "spectrum" at all. Whichever parts of the spectrum an autistic person is most affected, they will always be severely affected in a way an NT person simply isn't and all autistic people will be affected in all the areas to some degree, otherwise they would never be diagnosed. A significant impact on ability to deal with everyday life is a requirement for diagnosis. This is why it's so important that ASD is recognised as a significant disability in everyone who is diagnosed with it and not as some kind of quirk that everyone has to.some degree because it really, really isn't. Autistic people with personal care needs will be severely affected in certain areas, while those who are verbal will be severely affected in other areas and I can see and understand why it may be helpful to have some way to differentiate between the very different impacts of being more affected in certain areas but the problem with using the word "severe" is it implies a corresponding "mild" when there is no "mild" autism, just different combinations of areas affected which leaves each autistic person with a unique set of strengths and weaknesses which lead to a range of different support needs.

@prestel removing severe because of the implication of mild is what has happened. That doesn't remove that some people are impacted in all areas of need significantly, all the time whereas for others it's some areas, some of the time. Professionals are starting to use profound autism now instead of severe to counter this. As a genuine question, how do you feel about this term? Or do you still see mild as the implied opposite? I'm genuinely curious.

Your post does show though that the fear (rightly so) of not having needs met because of not being severe has taken that much needed and accurate description away from those who are.

It is more than just personal care too. I know of many people who are verbal with pc needs or nv/ limited useful comms who dont have hygiene needs.

I do think and agree that where diagnosed (not people just deciding, which I've seen happen) autism in any form is a disability and should be treated as such. I'm far from saying otherwise. I dont like it's just a difference stance because I do see it as a disability.

The impact autism has on those who are severe/ low etc is on their full life, everything, all the time. It's a million miles from someone who can do many things which has now become the public face of autism.

I'm sorry to derail this thread, I'm finding
it very helpful and insightful.

My son is diagnosed with ADD and was described as having autistic traits (I'm repeating what was said here, I don't mean to offend anyone by using that language). However he was not diagnosed as autistic. When he was little he was very loud and friendly and chatty with everyone so they have said he is 'just anxious' as he's grown.

However I do wonder if I should seek another assessment (it's so expensive, I'm in Australia and it cost me over $3000 the first time).

He is not 'just a bit anxious'. He won't go outside if there's wind, he struggles socially, everything is literal to him, he can't infer things, he won't go into a shopping centre if it's too crowded, if we go out to dinner I can feel his discomfort, even in hot weather he will wear his furry pj's because the material is comforting, he is obsessive and gets so focused on things that you can't get his mind to switch off even a little bit. He's so incredibly sensitive and gentle and the world just seems so scary from
his perspective.

@Bitheby knowing you have an autism dx and are able to live alone, have a job, do paperwork, not all together but you can do them are you ok with having the same dx as someone who cant communicate, can't dress, can't cook, maybe head bangs, requires 24 hour care? It's this that I'm getting at while you need support you can and have accomplished things. There is a difference in your needs, theres a difference on your abilities too yet both are the same dx. Surely this is an argument for separate dx? So that appropriate provision can be made for both?

@AgntOso. I think "profound" could be a useful descriptor of the overall impact autism has on some individuals compared to others. That's different from having a separate diagnosis, though, which earlier you seemed to be suggesting but I may have misunderstood because in your last post you describe very well the way different autistic people present with very different combinations of difficulties, making it impossible to place them together in distinct diagnostic groups. Which is why earlier I raised the difference between medical diagnosis and support needs and the fact that the first doesn't dictate the second in any illness or developmental condition. This isn't a problem unique to ASD. For example, a diagnosis of MS tells us someone has MS but it doesn't tell us how the illness impacts on them or what their support needs are. I honestly don't believe a diagnostic label ever opens up funding and support in the way you seem to think, support needs are always assessed on an individual basis rather than automatic based on diagnosed medical or developmental condition. I therefore don't think it's necessary to have different labels for ASD as everyone diagnosed with it should be assessed and provided with the support they require based on need. If this isn't happening then it's because the whole system is underfunded and everyone should be fighting the government for more funding not fighting each other.
I do have sympathy for your feeling that autism advocacy can be dominated by certain groups, reflecting some parts of the autistic community more than others. Parents and carers of non-verbal individuals definitely need to promote their needs too as they are less able to advocate for themselves but I can't help feeling that focusing on frictions between the different needs of different groups detracts from the fact that the whole autistic community is currently being let down by a lack of adequate funding and the idea that some autistic people aren't really disabled and don't really need help makes it much easier for those who wish to cut funding to everyone to justify doing so.

@Prestel I don't feel that a dx opens up funding, like many parents I've fought too many battles to count because of funding.
As I have said for me, it's around the dx no longer representing my son. The expansion of the dx has watered down its meaning from what it was. Its had to in order to include all those now in that group.

I personally think the funding issue is more of a problem for those less impacted as not being able to see a disability usually corresponds with available funding. The more hidden the harder for funding.

I would prefer for the diagnoses to be separate again or for a new diagnoses set for those more profoundly affected. I know some organisations / groups are calling for this but not very successfully.

I will encourage and may start to use profound more in my own language instead of severe. I wonder if this will lead to confusion with pmld though.

I agree it would be better if the autism community acted together and supported each otother. I would love to see the likes of #aa groups support the needs of those more affected it would help greatly.

I'm not trying to focus on the frictions between the groups but rather point out that the fight for support for one has dimished the support and understanding of the other in doing so.

This is outing but an example of the dangers of having a diagnosis that does not match the need. DS2 had a near miss accident at school escaping and a car, whilst injured it was not as severe as it could have been. His doctors surgery began a “at risk” investigation not on his school but on me for not taking him to A&E. when I explained his needs the doctor accused me exaggerating his condition as his diagnosis at no point indicated any risk to my child going to A&E. it took his paediatrician getting involved and a hospital passport created by CAMHs which includes the risk that a hospital appointment/treatment has the risk of him needing to be sectioned. A diagnosis with actual meaning is not just about funding.

romiandromi Yes, do go for another ASD assessment. ADD is often co-morbid with ASD and he also seems to have sensory issues which are now included in the ASD dx.

Dx are done on what the paed team see at the time and info from parents and schools.

Thing is, (from my experience as a parent of one DD, now mid-twenties) children change their presentation of traits as they grow. Some things that never were a problem become a serious one and others that were a major issue seem to fade into the background a bit. Don't get me wrong, things don't go away, but the child, teen and then adult's ability to cope or not in a lot of circumstances can fluctuate. Some days some triggers can be tolerated, other days everything's on Defcon 1 from waking up in the morning and there doesn't seem a way of cranking that down apart from time for her to process everything.

Generally speaking, undiagnosed autistic kids and adults cope until a point where they can't cope any more and then the traits become much more obvious to an observer because the mask has slipped and a dx is sought. It's not that they weren't autistic before that, it's that they were able not to show it up until that point.

@Boulshired How does a generalised descriptor like "severe" or "profound" autism communicate such a specific and individual profile and corresponding need, though? I don't really understand why ASD should be treated differently because many medical and developmental conditions can have equally varying impacts on those who suffer from them but no one says someone should be diagnosed with a different form of MS because they do/don't need to use a wheelchair. People are diagnosed with MS because they have been identified with the same underlying condition, not because they have the same symptoms. ASD is the same, everyone diagnosed with it has the same underlying developmental condition, even though the symptoms vary and while it's very useful for professionals and carers to know and understand the specific symptoms/presentation of each individual, I don't really see how individuals can be formally grouped in diagnostic boxes based on symptoms and impact when every individual's experience of autism is unique.

prestel
Autism links all his conditions together and is what causes the other behaviour. The learning disabilities is not what causes the anxiety but the autism. He presents in the stereotypical classic autism, diagnosed just after his second birthday. His other co morbidities are difficult to diagnose due to his autism. He is a list of symptoms but it’s the autism that is by far his biggest disability even more than his learning disability.

@Prestel I agree with you. The way I see, everyone is being failed. If having separate diagnoses would lead to everyone getting the right level of support and understanding about how their condition affects them, I'd be all for it. I doubt that is something that would happen, however. This makes me very sad for everyone involved.

@AgntOso I would happily advocate for those who are more severely affected by their autism than I am. I have no idea what #aa is as I am not part of the autism community in that way, but the issue I have with your post has nothing to do with a refusal of acknowledging that your child requires more care than I do.

The problem I have is that in a lot of your posts, you are doing the same thing healthcare workers and those in the wider world do, which is making assumptions about what I can and cannot do, and exactly how much worse your son's autism affects him. You do not know that. And one person with 'high-functioning autism' is also not like the other. I can detect and use sarcasm, read people's emotions reasonably well and I am (as you say) able to work, as long as I do not have to leave the house. My adaptive functioning skills are very low however, and I need someone to tell me to wash, to brush my teeth, to drink or to go to go to the toilet at regular intervals. My friend who is similarly classed as 'high-functioning', does all those things perfectly independently, but their social skills and bizarre (in the eyes of society) way of communicating have prevented them from being employed or having any kind of romantic relationship. At the same time, they can live independently and do so, whilst I cannot.

Both of us are less affected by our autism than your son is. I have no issues with this at all, it is just fact. But both of us are also pretty profoundly disabled, and comparing it to having your pinky toe amputated is hurtful and dismissive. I obviously have no idea what's it like to not have a pinky toe, but I am willing to bet I would kill for swapping my daily reality with that one.

I think that diagrams like this are especially helpful for those who are classed as high-functioning, because high-functioning is completely misunderstood and is synonymous with mild. As a result, people get defensive when others bring up their more disabled children, because it comes across as yet another attempt at minimising the effects autism has on the daily life of someone who happens to be able to speak and has no LD. This was in my opinion not better when the DSM still divided up the disorders, because Aspergers was seen as autism-light, and nobody would even look at whether you exhibited similar behaviours or needs you see on the 'severe' end of the spectrum. Frankly, I am just as ??? by people who shout online about autism being something to be celebrated and embraced as you are. Those people don't represent me either. I simply feel it doesn't matter as dividing up diagnoses would not help my situation at all and could make it worse. A point system could work if it was comprehensive and actually adhered to, but that would require there to be funding that doesn't exist. With the demands of Covid I don't see that changing any time soon either.

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.