... 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 XDownwiththissortofthingX]@RosesforMama

Precisely why I've personally never been comfortable with the fact that there's nowhere near enough done to differentiate between autism and learning difficulties.

People invariably say to me 'but you don't come across as autistic', when what they actually mean is 'but you don't present with any obvious learning difficulties'.

It really enrages me, because people assume that the two go hand-in-hand, to the point whereby the presence of autism is defined by the presence of learning difficulties. It's tiresome having to explain it over and over and over.[/quote]
This.

I am so fed up of people conflating two different conditions, just because the same person has them. Yes it's not uncommon for the two to be comorbid, and yes they are both neurological, but that does not mean one should be folded into the other.

So many "autism parents" (can we get rid of that term as well?) call their children "severely autistic", when it would be far more accurate (and not ableist) to say their child is autistic and also has learning disabilities.

The you can go on to give more detail about exactly what support they need, like any other autistic person. Rather than implying they are sooooo much more autistic than others, who therefore have no right to an opinion on terminology as a result (but the NT parent does?!).

The research funding is only just starting to be reallocated more fairly, after decades of largely focusing on a subset of the community (autistic boys, often with learning disabilities), so it will be years before we see decent amounts of data on the true range of autistic experience. And longer before attitudes change and people truly understand and accept that there is no such thing as "severe autism".

And mixing up levels of support needs with non-existent levels of autism needs addressing too.

@Coronawireless

Interesting to hear people comment that learning difficulty should be assessed separately from autism - of course it should be! but it took that comment to make the obvious seem clear to me. Does a severely disabled (by which I mean requiring full-time care) person with autism always have a learning disorder - or can you be “severely autistic” without the learning disability? Genuine question. Also, re the anxiety/depression - and the other psychiatric disorders which I know can be more common with, but are not the same thing as, autism. How to separate them from the autism diagnosis in any assessment of needs, given that they can happen in anyone, yet are relatively common with autism? These are genuine questions and no offence is intended.

I think the remaining people described as "severely autistic" (i.e. the ones who don't also have a learning disability) are almost invariably the other non-verbal ones.

So many people write them off because they assume a lack of speech tells you they also can't think. But verbal interaction is just one spoke on the wheel, and they may be very capable in other ways, but unsupported to express that if their communication needs are not addressed.

And that can have gone on since childhood, so they may not have been supported to develop even basic life skills as it was assumed they couldn't do them, just because they couldn't communicate in the way most people are used to. So the terminology leads to underestimating people as well as overestimating them.

There are some examples of people's stories online, if you search - people who were assumed to be "severely autistic" and incapable of anything, simply because they could not speak. And what they have achieved once their communication needs were met.

Obviously anxiety is not an inherent feature of autism, or even necessarily a comorbid diagnosis. But huge numbers of autistic people experience at least some anxiety. So it's just one of the traits which should always be considered in support needs, and specifically in ways that are accessible to and effective for autistic people, since mainstream treatments may not be suitable for various reasons.

The low-functioning label is used to deny autonomy. The high-functioning label is used to deny support.

I just wanted to add a little something to this thread..I apologise in advance if I get it wrong. To clarify a little I am the mother of a daughter with Aspergers, so please know that I am coming from a good place.

I once had the privilege of hearing Professor Luke Beardon speak - he's recognised as something of an expert, and indeed is autistic himself..he said many many incredibly helpful and interesting things , but what really stuck with me is what he said about "low functioning" v "high functioning" autism. Firstly he more or less said that it was a nonsense classification, but then he also said that society always assumes that the "high functioning" individual is better off somehow..has more quality of life etc, but in his experience that was not the case..the high functioning individual looks better on the surface, because they can "mask" their struggles to a greater extent, but that underneath the surface they are often struggling terribly, really terribly, and as a direct consequence have a high incidence of taking their own lives. I have never forgotten that, especially as I have inevitably been faced with well meaning people telling me my daughters problems "aren't that bad". They are.

"So many "autism parents" (can we get rid of that term as well?) call their children "severely autistic", when it would be far more accurate (and not ableist) to say their child is autistic and also has learning disabilities."

I think that ds has severe autism and a severe learning disability. I would usually describe him as having autism and a severe learning disability but there is no doubt his autism is severe. I think people without a learning disability can also have severe autism too. I don't think it is only those with a learning disability. I would never describe myself as an autism parent. I really dislike that sort of stuff.

I’m not really sure about the use of ASD to cover so many different difficulties and challenges.

I agree so called mild ASD is not mild at all. But I don’t know how helpful it is to people who are verbal and dx with ASD to be in the same diagnostic category as those with ASD who are non verbal and need 24 personal care

@IdesMarchof

I’m not really sure about the use of ASD to cover so many different difficulties and challenges.

I agree so called mild ASD is not mild at all. But I don’t know how helpful it is to people who are verbal and dx with ASD to be in the same diagnostic category as those with ASD who are non verbal and need 24 personal care

"non-verbal" is not synonymous with needing 24/7 care. Being verbal is not synonymous with not needing 24/7 care. I know that you likely didn't mean that, but it gets to me a little because it sounds as if speech is this major defining factor of how bad someone's autism is, and it's just another one of those things someone ends up fighting against.

Nobody on here is trying to I'm sure, but the multiple posts stating, "we get you're disabled, but surely you understand you are not like x who needs care every hour of the day", are condescending and unintentionally harmful. I totally get that someone whose child is incapable of doing anything independently because they have a debilitating condition looks at me and thinks "what I would give for my child's autism to be more like yours". If I was the parent of such a child, there is a good chance I would think the same. Quality of life however, isn't always on a sliding scale of how much help someone needs to perform tasks. And whilst you as someone who cares for some who is autistic might see that I am also in need of support, people outside of the autism bubble are not so clued in.

I for example have:

• no learning disabilities
• a job that pays 40k
• a husband

I also have:

• incontinence because I can't always tell when I need the toilet
• Issues with hydration because I can't always tell when I need to drink
• Debt because I can't pay my own bills
• Periods where I don't leave the house for months
• Pain due to my posture abnormalities
• Depression and suicidal ideation
• Fixations to the detriment of all else
• Severe meltdowns

The one time I tried living on my own I ended up creating a biohazard. I don't shower or do the washing, so my colleagues would complain about my smell. I didn't pay the council tax and ended up with a court summons. I felt bad about the salesman at the gym so ended up signing a 12 month unaffordable contract. I was put on anti-depressants and couldn't advocate for myself when I started getting extreme side-effects. Things in my fridge rot because they don't get eaten.

Do you know how much help I've received in my life to deal with my autism? A flat zero. Nothing.

Because everyone around me, GP, social care, mental health services...They see you have a job, three friends and a relationship and you are deemed competent and able. If I lived alone I wouldn't have any of those things, but none of that is taken into account. I am not independent. I went straight from my parents to my DH. My life is a daily dose of misery and frustration. I piss myself if I'm not careful. I don't need a full-time carer, and I'm not trying to take away anyone's support, but I get no support. People like me who are 'high-functioning' get nothing. That's why there's so much talk coming from that side of the community. Nobody is trying to deny the severity of someone else's disability. I'm just trying to get someone to acknowledge the severity of mine.

Sorry for all that, things like this make me a bit emotional because I feel so helpless.

@Burnedandbegone I am really sorry to hear what you are dealing with and that my post upset you. I totally get where you are coming from.

I do completely understand the complexities of verbal v non verbal and levels of care needed and you are right to highlight that

I should have explained in my post that I have experience of both ends of this in my own family - non verbal which happens to be plus high medical needs. I also have a dd with so called HFA

I’m not sure my dd will ever live fully independently and think she will be prone to MH issues in her life, may never get a job. She is of course also hugely valuable in her own right - funny and talented.

I agree entirely that the severity of people of challenges for people like dd should be recognised. We get absolutely no support, which is very difficult.

I would like to see a world where we value neurodiverse people’s talents while supporting them in their challenges. Sadly that still seems very far away

@Burnedandbegone I've dipped in and out of reading this thread, but what you've written struck a chord with me. I've had a few people, since my diagnosis, tell me that I'm "not that autistic". Like you, I have a husband, no learning disabilities and a high-paying job (fortunate to have found my niche and be paid for being an expert). But I'm a complete disaster living by myself, the few times I have tried it ends really badly - don't eat properly, don't talk to people, don't leave the house unless it's to go to work, disordered sleeping, obsessions take over etc. But I hold down a job and can keep a roof over my head, so people think I'm fine. I scored very strongly for autism on the tests, I just mask really well.

DH is older than me and has a family history of genetic medical conditions associated with a shorter lifespan. I come from a long line of 80+ year olds. I worry, even though we are both still young(ish!), what will happen to me if he pre-deceases me when we are older. It's enough of a gap that I could be facing over a decade without him. He has been amazing for keeping me stable, and has the patience of an absolute saint. He 'manages' me really well. So I feed him lots of vegetables, water and make sure he exercises I've tried looking for support services or answers, but all the groups, services and message boards are geared towards people who have different types of struggles, or their parents.

I thought a diagnosis would open up some help, but instead I feel a bit lost.

@IdesMarchof thank you.

It's not particularly your post that upset me. I read all ten pages of this thread and had to go through quite a few posts that boiled down to "yes you are disabled, but surely you can't possibly think you are as disabled as my child."

That comes across as condescending, and also highlights what I feel some parents of children whose care needs are more immediate and obvious don't realise, which is that the healthcare system thinks people like me are not disabled at all. If their autistic child (hypothetically) needs 50 hours of care, but gets only 30, and I need 20 , but get zero, then all that's happened is that we are both being failed. That's also what mainly causes a lot of these arguments, because 'both sides' are fighting over a barely existing jar of funding and therefore the urge to get territorial and defensive is huge. It's sad all around.

But I don’t know how helpful it is to people who are verbal and dx with ASD to be in the same diagnostic category as those with ASD who are non verbal and need 24 personal care

That makes no sense though. We don't categorise other conditions based on whether individuals require social care or not, we base it on what medical or developmental condition they have. Saying someone has Crohns, MS or ADHD or whatever tells us no more about those people's support needs than saying someone has ASD but no one seems to have any difficulty understanding those terms describe a common medical or developmental condition but not specifically how that condition impacts on someone's ability to live independently. Someone who has MS but doesn't require a wheelchair doesn't benefit from being put in a different diagnostic category from someone who does, they still have MS, they just have different or less support needs. And the same is true of people with ASD who are verbal, they still have ASD even if they have different or less support needs. Just as it would be wrong to assume someone with MS isn't really ill or in need of support if they aren't in a wheelchair, it's wrong to assume someone with ASD who is verbal isn't really disabled and doesn't need any support, yet this is what happens all the time and the misunderstanding of what is meant by a spectrum disorder and the idea that ASD is a sliding scale rather than a condition that you either have or you don't is a large part of why many people with ASD struggle to get the help and support and understanding they need.

Yes @Teapotuser those terms are generally not used much these days because of better understanding of the condition. I have ASD and would have been defined under those terms as "High Functioning" - I have a job, a family, and am articulate, there's a lot of things I can do. However that doesn't mean my autism is "mild"...

that is not what High/Low functioning is in my understanding. I always thought it refers to IQ (normal to high IQ = HF and low IQ = low functioning).

I have a child with autism and severe learning difficulties and find low functioning quite good as short hand.

Severe learning difficulties (in the UK) are not an indication of IQ, that would be learning disabilities and thats the catch 22 for children and diagnosis and why the neat sub headers do not always work. The Autism can make the learning disabilities hard to diagnose and the medical profession uncomfortable predicting on small children that could if wrongly diagnosed lead to inadequate education. Leaving parents with a diagnosis that does not match the child.

I've struggled with the comorbid learning disabilities to my son's autism. His diagnosis was classic autism, which was deemed to be the most severe form. I can't tell what's the autism and what's the learning disabilities.
I say he's low functioning because it covers everything.
I have found that it's the parents of and the people who have what was considered "high functioning" autism to have a problem with the term because it puts pressure on to have to appear more functional than they are. As if it diminishes their struggles. Which I can understand.

My older sister is Autistic, and I work in a specialist unit for Autistic primary school children.

And while many of them share a lot of broad characteristics, they also couldn't be more different from each other in their unique set of strengths and challenges. Just like all NT's being different from each other!

@rosiejaune

My son is only dx as severe autism and hypermobility not that it's any of your business! It is his autism which is disabling. He doesn't have learning disabilities unless you're some sort of world class ep/cp/ paediatrician which has managed to provide him with a dx from a brief mumsnet exchange. If not do not dx him. Medical *please read that a few times ie those professional people trained and parents know their child best. You assume parents and medical profs have wrongly mis diagnosed or miscommunication a person with severe autism needs because it doesn't suit your narrative.

As a side for those discussing ableism considering the definition. Then consider that a group of people who experience a condition under much different circumstances without shared experience then talk for another group of people whose needs they don't understand.

Let's be realistic mental health isn't part of the autism dx. It is separate. Learning disability again is separate.

If people want to use a fluctuating chart showing autism you have to acknowledge that there will be people who remain at the worst parts of the chart all of the time, so yes these people are more disabled / affected. However you want to term it.

@Duggeehugs82 I couldnt get the love heart x

www.ncsautism.org/blogi-am-my-daughters-voice?fbclid=IwAR0LivqKyX8M5AQmbIjtED4nNZjNASgvXyed_qIQwA-6hNH3miQI0BLAXB0

www.psychologytoday.com/us/blog/inspectrum/202102/weaponizing-ableism-in-the-world-autism?fbclid=IwAR3I161nY3tq4IAomcw5GWaM0IIyXc3BthODjbUUQc4K2CURyh1kQbNQnQw

I have shared two articles above which some on here may find of interest. The first is about a mother advocating for her child and the second from psychology today is about ableism being weaponized in the autism community to sound out the voices of parents and carers of those with severe autism.

[quote AgntOso]@rosiejaune

My son is only dx as severe autism and hypermobility not that it's any of your business! It is his autism which is disabling. He doesn't have learning disabilities unless you're some sort of world class ep/cp/ paediatrician which has managed to provide him with a dx from a brief mumsnet exchange. If not do not dx him. Medical *please read that a few times ie those professional people trained and parents know their child best. You assume parents and medical profs have wrongly mis diagnosed or miscommunication a person with severe autism needs because it doesn't suit your narrative.

As a side for those discussing ableism considering the definition. Then consider that a group of people who experience a condition under much different circumstances without shared experience then talk for another group of people whose needs they don't understand.

Let's be realistic mental health isn't part of the autism dx. It is separate. Learning disability again is separate.

If people want to use a fluctuating chart showing autism you have to acknowledge that there will be people who remain at the worst parts of the chart all of the time, so yes these people are more disabled / affected. However you want to term it.[/quote]
I think part of this is missing the point. I can only speak for myself, but the problem I have is not that your child will score as more impaired in all areas related to difficulties due to autism or that your child has higher care needs than I do because their autism is more severe. I totally accept that. The main problem I have and what I think the chart illustrates quite well, is that people make the assumption that my relatively low level of impairment in one area, automatically results in me having low levels of impairment in all areas.

That is the assumption I and others who keep being told that we have 'mild autism' are trying to fight. I get that not everyone is going about that in the right way and people end up getting hurt or spoken for, but that is the crux of the issue.

If I go on WebMD for example, it says this:

"High-functioning autism” isn’t an official medical term or diagnosis. It’s an informal one some people use when they talk about people with an autism spectrum disorder who can speak, read, write, and handle basic life skills like eating and getting dressed. They can live independently.

This is untrue, this is harmful. Being able to speak and read and write does not guarantee an ability to handle basic life skills and live independently. As per my previous post, I cannot live on my own.

I once had to go on a field trip when I was 19. It was a camping trip. I am not able to manage my toileting needs well enough to cope with camping, so I ended up wetting myself every single night for two weeks straight. It was a nightmare.

I have extreme obsessions and fixations and they majorly interfere with my ability to perform. I can be aggressive, unreasonable and extremely anxious. If I'm left alone I'll become underweight. I have a million joint issues. If I go to the doctor to seek help with any of these issues, I do not get believed. So it falls on my poor DH to be my carer, and as he has his own difficulties he cannot do it very well. That's not trying to take away from anybody else. I just want people to believe me for once when I try to tell them that I am disabled. I have mental health issues precisely because nobody is helping me effectively manage my autism.

This isn't meant to be a personal attack, sorry if it comes across that way. I am just tired.

@Burnedandbegone, yes that does feel personal because you quoted me, that makes it personal. My post wasn't aimed at you so why aim yours at me? Saying you're tired doesn't excuse you from this.

I don't deny that other people on the spectrum have areas where they need help. What I am saying is that having some areas is easier/ lesser/ whatever term you want to use than having all areas of need. Saying you're difficulties or needs are the same as my sons is wrong because they aren't.

I wouldn't deny that you need support, I hope you get that support and help with your mental health (this is meant and not sarcasm as I'm aware how it could read). I do agree that you have a disability, autism is a disability. I don't agree that you and my child should have the same label, they need differentiating. My son won't ever get married, have a relationship, go on a camping trip without someone to ensure his safety 24 hours a day..... it is different.

I have no issue with anyone getting help especially for anything associated with autism. The issue I have is with people who are communicative, independent enough to have relationships, live without support (as in pa's supplied to support because they couldnt livewithout) saying they have the same disability as my son. I have further issue with the extent of his needs being dismissed because medical professionals and myself and our husband haven't bothered to try aac (aimed at a previous poster not you). Further to that the assumption that all people with severe autism have learning disabilities separate to their autism(again not aimed at you). Hopefully someone will let all the doctors know their diagnoses are wrong and let them read this thread.

It is beyond my understanding why anyone would argue to have the same dx as my son when they clearly have less needs.

I just don’t feel calling such differently presenting issues the same thing is at all helpful. Until there is clear genetic evidence that the very differently presenting impairments really have the same root cause(s) I’m sceptical.

@AgntOso I was trying to be nice, because whilst I don't have an issue with you or your passion for your child's wellbeing, I certainly have issues with some of the views you have expressed in your posts.

"Saying you're difficulties or needs are the same as my sons is wrong because they aren't."

Where did I say this? What I said was that I have significant impairments that are being ignored. Your child needing more support with daily living than I do is irrelevant to my situation.

^" I do agree that you have a disability, autism is a disability. I don't agree that you and my child should have the same label, they need differentiating. My son won't ever get married, have a relationship, go on a camping trip without someone to ensure his safety 24 hours a day..... it is different.

It is beyond my understanding why anyone would argue to have the same dx as my son when they clearly have less needs."^

Whether you like it or not, your child and I have the same condition. Denying that is offensive and hurtful and I'm sorry you are unable to see that. If you and I were both diagnosed with cancer, but I was stage 3 and you were stage 1, we'd still both have cancer! Having 'less bad' cancer doesn't stop it from being cancer. Not needing a 24/7 carer for my autism does not stop me from having autism.

You are turning this into a race to the bottom by constantly making things about how your child has it worse. Statements such as "my son will never be able to go camping on his own without someone to ensure his safety 24 hours a day", completely dismiss my experience.

Unlike your son it seems (yes I'm being a bit petty), I do not have anyone to advocate for me or ensure my safety, so when I at 19 piss myself on a daily basis for two weeks straight and become incapable of leaving my tent to eat food or wash or drink, I'm left to roll in my own filth without proper nutrition and support counting down the hours until I can leave this humiliation. I'm sure you mean well, but please don't tell me how bad or not bad my disability affects me. I can have relationships yes, but most have been sexually and emotionally abusive because I am easily taken advantage of (not my current one I might add). I am 30 and I've not felt safe or secure since I was around 8 years old.

@Burnedandbegone

• incontinence because I can't always tell when I need the toilet
• Issues with hydration because I can't always tell when I need to drink
• Debt because I can't pay my own bills
• Periods where I don't leave the house for months
• Pain due to my posture abnormalities
• Depression and suicidal ideation
• Fixations to the detriment of all else
• Severe meltdowns

hi, you probably know this but these (and I suspect you face more) difficulties would make you entitled to get PIP. It is a horrible process and you would definitely need support to take it through to actually being ‘allowed’ to claim. It would however mean that you have a little cushion, perhaps to use to buy yourself some help? Please look into it, it is a gateway to other help in addition to being a useful sum. If you have applied and been turned away, I apologise for bringing it up...I did not get an award until it went to Court. As I said, a horrible process but perhaps worth trying (again). Happy to walk you through, share resources I used etc.