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To think autism gets worse with each generation

494 replies

eastereggg · 30/12/2024 16:08

Genuine question.

Why does it seem that autism gets worse with each generation?

Example: a mother is a late diagnosed autistic but her child is very clearly autistic and displays much more severe characteristics than she did. The grandmother would probably be diagnosed autistic today as well.

There seems to be a recurring pattern that I'm seeing where autism is getting more severe with each generation. Is there an explanation for this?

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SummerM00n · 01/01/2025 17:10

SENCoWithADHD · 01/01/2025 16:48

Actually, most of the NHS ones I get via work do comment on the level of impairment.

None of ours have a category, some description but category no.

SENCoWithADHD · 01/01/2025 16:48

SummerM00n · 01/01/2025 16:24

You aren’t given a category on a uk diagnosis. DSm5 introduced support needs which didn’t appear on any of our nhs diagnosis but that’s very different and it is highlighted that “different levels can exist within the same person, who may have low support needs in one sphere and high in another.” You can also change in need severity during life. My dd has been 1,2 and 3 as regards support needs.

Actually, most of the NHS ones I get via work do comment on the level of impairment.

Jimmyneutronsforehead · 01/01/2025 16:45

catphone · 01/01/2025 16:34

its possible for someone to be more impacted by their autism than you in a given situation but its also possible for someone to be more autistic than you. There are so many symptoms and severities associated with autism and there are people who will have more symptoms associated with autism that are more severe. In this imaginary scenario, their areas of the brain might be more impacted by autism than in yours.

Edited

But now you're basing autism on a linear spectrum of just a tiny little bit autistic all the way to extremely autistic.

The autism spectrum is not linear. It's a spider graph of need and symptoms and yes some people's needs in some areas will consistently be considerably higher and they may or may not have comorbid conditions like learning disabilities, speech apraxia, extreme sensory sensitivities, etc. but that doesn't make them more autistic it means that in those areas their need is greater and they are more disabled in these areas.

catphone · 01/01/2025 16:34

Ohthatsabitshit · 01/01/2025 16:11

I don’t agree that they are “more autistic” any more than an afghani woman is “more female” than I am. I think they are more impacted by their disability.

its possible for someone to be more impacted by their autism than you in a given situation but its also possible for someone to be more autistic than you. There are so many symptoms and severities associated with autism and there are people who will have more symptoms associated with autism that are more severe. In this imaginary scenario, their areas of the brain might be more impacted by autism than in yours.

lleeggoo · 01/01/2025 16:30

@Ohthatsabitshit

I disagree I think you CAN categorise it (and they do).

When should it be categorised?

DD was diagnosed in primary school, at the time she would have been categorised as having low support needs. Fast forward to her mid teens I have a child who hasn't spoken to a single person outside of parents/siblings for 3 years. She needs a very high level of support, an adult with her at all times. If she were categorised at the point of diagnosis it would not match the person she is now.

ntmdino · 01/01/2025 16:28

SummerM00n · 01/01/2025 16:24

You aren’t given a category on a uk diagnosis. DSm5 introduced support needs which didn’t appear on any of our nhs diagnosis but that’s very different and it is highlighted that “different levels can exist within the same person, who may have low support needs in one sphere and high in another.” You can also change in need severity during life. My dd has been 1,2 and 3 as regards support needs.

Just as a point of order...the NHS isn't the only diagnostic service, and the lack of level assignment is perhaps because (as far as I'm aware) they only use the ICD definitions. I had a level reference in my (private) diagnosis, because it was done with reference to both the ICD and DSM.

With that said, they're pretty much irrelevant here - as I mentioned earlier, the levels set in the DSM are only there because they specifically relate to the US health insurance system, so they don't mean a whole lot in any other context.

ntmdino · 01/01/2025 16:25

Ohthatsabitshit · 01/01/2025 16:07

I don’t think they have said that or if someone has it’s not most people. What I think is there’s an inability to recognise that personal experience however difficult may not be even a fraction of what less able autistics experience. Sometimes it is true that you are NOT the most vulnerable person in the room and that your experience while excruciating may not even touch the sides of other less fortunate people experience. It’s not really about Top Trumps though it more about reality.

And yet...you're the one comparing levels of disability as though it's a card game. The only effect of that is to minimise someone's struggles. It's no different to the nonsensical "People in Africa have it worse than you, so suck it up" rubbish that parents foist on their kids - it helps precisely nobody, and is used specifically to silence them.

SummerM00n · 01/01/2025 16:24

Ohthatsabitshit · 01/01/2025 16:14

I disagree I think you CAN categorise it (and they do). It is utterly ridiculous to me that anyone thinks it’s a unilateral experience.

You aren’t given a category on a uk diagnosis. DSm5 introduced support needs which didn’t appear on any of our nhs diagnosis but that’s very different and it is highlighted that “different levels can exist within the same person, who may have low support needs in one sphere and high in another.” You can also change in need severity during life. My dd has been 1,2 and 3 as regards support needs.

SummerM00n · 01/01/2025 16:14

catphone · 01/01/2025 16:03

An autistics persons inability to mask at all in my example is only part of it.
if they have more symptoms than I do overall, to more of a severity than I have over all, and are functioning less than I can over all, then they are more autistic. I can mask sometimes. There are people who can’t mask at all.
I’m not necessarily referring to co-morbidities.

Edited

Masking is hugely destructive and damaging. My dd masks massively and it has caused far more issues and use of services than with other members of the family who present more in the stereotypical way.

Ohthatsabitshit · 01/01/2025 16:14

SummerM00n · 01/01/2025 16:09

That’s a ridiculous analogy and autism is completely different. You can’t categorise it. If everybody’s autism significantly impacts life nobody has mild autism for a start. You could say those who need tier 4 hospitals or supportive living are “severe” but the need for both can change during life. Somebody who doesn’t need either could be described as mild in comparison but that isn’t necessarily the case as they may be unable to work or on hoards of meds just to cope with life doing very little.Learning disabilities can be separate to autism, sometimes not…Also the way it impacts may differ but that in itself doesn’t mean need is less or more.

I disagree I think you CAN categorise it (and they do). It is utterly ridiculous to me that anyone thinks it’s a unilateral experience.

Ohthatsabitshit · 01/01/2025 16:11

catphone · 01/01/2025 16:03

An autistics persons inability to mask at all in my example is only part of it.
if they have more symptoms than I do overall, to more of a severity than I have over all, and are functioning less than I can over all, then they are more autistic. I can mask sometimes. There are people who can’t mask at all.
I’m not necessarily referring to co-morbidities.

Edited

I don’t agree that they are “more autistic” any more than an afghani woman is “more female” than I am. I think they are more impacted by their disability.

SummerM00n · 01/01/2025 16:09

Ohthatsabitshit · 01/01/2025 15:54

I think this is the confusion. Nobody is saying that anyone with an autism diagnosis isn’t significantly impacted by their disability, what they are saying is some autistic people are more disabled by their condition than others. It’s a bit like being female, sometimes it’s a mild disadvantage and you experience sexism in the form of lower pay, worse healthcare and sexual aggression, as we do in the UK. That’s dreadful but it’s mild in comparison to what being female brings if you live under the Taliban. The impact in both instances IS significant but one is severe and one mild or moderate or whatever descriptors you want to use.

That’s a ridiculous analogy and autism is completely different. You can’t categorise it. If everybody’s autism significantly impacts life nobody has mild autism for a start. You could say those who need tier 4 hospitals or supportive living are “severe” but the need for both can change during life. Somebody who doesn’t need either could be described as mild in comparison but that isn’t necessarily the case as they may be unable to work or on hoards of meds just to cope with life doing very little.Learning disabilities can be separate to autism, sometimes not…Also the way it impacts may differ but that in itself doesn’t mean need is less or more.

BrightYellowTrain · 01/01/2025 16:09

Yet autistic women without a co-morbid learning disability (i.e. the subsection of the autistic population stereotypically considered able to mask the best) is the subsection of the autistic population most likely to die by suicide.

Sorry, the quote didn’t work, but my post was in response to @catphone’s post.

Ohthatsabitshit · 01/01/2025 16:07

ntmdino · 01/01/2025 15:58

A number of people in this thread have said exactly that - which is the primary problem. The secondary problem is what usually follows, which is "if you're not heavily disabled 100% of the time, you're not even autistic" as though anything other than a complete, pervasive inability to live without 24/7 support is just some kind of mild inconvenience.

I don’t think they have said that or if someone has it’s not most people. What I think is there’s an inability to recognise that personal experience however difficult may not be even a fraction of what less able autistics experience. Sometimes it is true that you are NOT the most vulnerable person in the room and that your experience while excruciating may not even touch the sides of other less fortunate people experience. It’s not really about Top Trumps though it more about reality.

catphone · 01/01/2025 16:06

Ohthatsabitshit · 01/01/2025 15:54

I think this is the confusion. Nobody is saying that anyone with an autism diagnosis isn’t significantly impacted by their disability, what they are saying is some autistic people are more disabled by their condition than others. It’s a bit like being female, sometimes it’s a mild disadvantage and you experience sexism in the form of lower pay, worse healthcare and sexual aggression, as we do in the UK. That’s dreadful but it’s mild in comparison to what being female brings if you live under the Taliban. The impact in both instances IS significant but one is severe and one mild or moderate or whatever descriptors you want to use.

Yes that’s what I’m saying

catphone · 01/01/2025 16:03

Jimmyneutronsforehead · 01/01/2025 15:48

But you weren't just comparing them to you. You were holding autistic people to a standard based on how neurotypical they can behave.

For one, you're either autistic or you're not, two, some autistic people have more struggles than others, and they may be sporadic or lifelong, there will always be some people who are always high needs and need support but judging how neurotypical they are able to pretend to be is not a good measure of "how autistic someone is".

There's absolutely nothing wrong with acknowledging that some people have been and will always be high needs, dependent autistic people with or without comorbid learning disabilities or other disabilities, and that doesn't match your experience. Identifying support needs is clinically beneficial. Basing ones diagnosis on how neurotypical they can pretend to be does not help.

An autistics persons inability to mask at all in my example is only part of it.
if they have more symptoms than I do overall, to more of a severity than I have over all, and are functioning less than I can over all, then they are more autistic. I can mask sometimes. There are people who can’t mask at all.
I’m not necessarily referring to co-morbidities.

Annoyingsquirrels · 01/01/2025 16:02

Autism can be caused by genetic conditions e.g fragile x where the number of repeats on the x chromosome expands between generations increasing the severity of the autism (a carrier with less than 200 repeats may have some autism symptoms whereas someone with the full mutation of over 200 repeats is likely to display severe autism symptoms (especially if male).

It is estimated that around 5% of autism is linked to fragile x and it is possible there are other genetic mutations we do not yet know about which work in the same way in causing autism.

ntmdino · 01/01/2025 15:58

Ohthatsabitshit · 01/01/2025 15:54

I think this is the confusion. Nobody is saying that anyone with an autism diagnosis isn’t significantly impacted by their disability, what they are saying is some autistic people are more disabled by their condition than others. It’s a bit like being female, sometimes it’s a mild disadvantage and you experience sexism in the form of lower pay, worse healthcare and sexual aggression, as we do in the UK. That’s dreadful but it’s mild in comparison to what being female brings if you live under the Taliban. The impact in both instances IS significant but one is severe and one mild or moderate or whatever descriptors you want to use.

A number of people in this thread have said exactly that - which is the primary problem. The secondary problem is what usually follows, which is "if you're not heavily disabled 100% of the time, you're not even autistic" as though anything other than a complete, pervasive inability to live without 24/7 support is just some kind of mild inconvenience.

Ohthatsabitshit · 01/01/2025 15:54

SummerM00n · 01/01/2025 14:12

But nobody can have mild autism. Traits need to significantly impact life to get a diagnosis.

I think this is the confusion. Nobody is saying that anyone with an autism diagnosis isn’t significantly impacted by their disability, what they are saying is some autistic people are more disabled by their condition than others. It’s a bit like being female, sometimes it’s a mild disadvantage and you experience sexism in the form of lower pay, worse healthcare and sexual aggression, as we do in the UK. That’s dreadful but it’s mild in comparison to what being female brings if you live under the Taliban. The impact in both instances IS significant but one is severe and one mild or moderate or whatever descriptors you want to use.

Jimmyneutronsforehead · 01/01/2025 15:48

catphone · 01/01/2025 15:19

I am “that poster” you are referring to and I was diagnosed as autistic as a child. So I’m not a neurotypical nor do I have an neurotypical opinion and I can’t always pass as one either. you are doing exactly what you accused me of and minimising my difficulties. The irony.
I’m aware autism is a spectrum. I have a mix of high functioning and low functioning symptoms. I can mask at times. I still don’t consider myself to be as autistic as someone who can’t function at all and can never mask or who has more severe symptoms over all in comparison to mine

Edited

But you weren't just comparing them to you. You were holding autistic people to a standard based on how neurotypical they can behave.

For one, you're either autistic or you're not, two, some autistic people have more struggles than others, and they may be sporadic or lifelong, there will always be some people who are always high needs and need support but judging how neurotypical they are able to pretend to be is not a good measure of "how autistic someone is".

There's absolutely nothing wrong with acknowledging that some people have been and will always be high needs, dependent autistic people with or without comorbid learning disabilities or other disabilities, and that doesn't match your experience. Identifying support needs is clinically beneficial. Basing ones diagnosis on how neurotypical they can pretend to be does not help.

catphone · 01/01/2025 15:19

Jimmyneutronsforehead · 01/01/2025 12:31

Thank you. I'd written a lengthy response to this poster but deleted it out of frustration but this is pretty succinct.

I compared my non-verbal, visible stimming cousin who lives in his own flat supported externally, never had a relationship never suffered any sort of abuse to me, very verbal, don't stim, been abused in every relationship in every possible way, cannot live unsupported, can't even shower without it taking a long time to prepare myself for the hell that is showering or it taking forever in the shower once I'm there because it's a sensory nightmare and highly distressing. I live in fear of my grandmother passing away as she has been a constant source of support in my life that everytime I have tried to live independently and failed she has handled that trauma in ways she did not sign up for and she's done so without complaint.

If we judge severity by neurotypical standards like that poster then yeah sure my cousin has "more severe" autism, but he's unbothered and supported, he understands his limitations, but has never had to work and fight the middle management for accomodations that they push back for, and he's never had to find ways to get out 40k worth of debt that manipulative exes have taken advantage of with, and he hasn't ever had CPTSD coined at him in any way shape or form.

If you look at severity based on how it impacts the individual, in my comparison I definitely feel that I am more significantly impacted. I'm being investigated for autoimmune conditions because of the constant stress of fighting for my needs to be met in every professional setting, in every relationship, I've been through more therapy than I dare to try and count and many of it has been detrimental as it isn't set up for neurodivergents, I've self harmed and planned my own death and reached rock bottom and cried to receptionists, doctors and nurses, crisis teams and samaritans more than any one else I know because I simply just do now know why I can act normal but I am not normal and I just can't do things normally consistently. I've behaved autistically and been held to account of not behaving in a neurotypical way and reprimanded instead of met with compassion. I've had friends and family walk away or hang up the phone because of my tone being off, or because they've interpreted something in my words that wasn't actually said. I've been brought into disciplinaries in work because once again I have said things or asked clarifying questions to gain context of a situation and people have misinterpreted what I have said, and had the fear of God put into me that I might lose my only source of income and ruin not only my life but my partners life by not suddenly being financially valuable but seeing a pattern in how employers treat me and knowing it is going to happen again and again.

I do of course know that some people with autism will never live any life with any sort of independence or autonomy, will never read or write, will never have a romantic relationship, will never work, will never be able to express an interest in something with ease and I hope anyone reading this does not assume this is a race to the bottom, but I'm just replying to this extremely valid point the quoted poster has made in that surely severity is a very personal thing and just because someone's struggles are different to how you perceive them, it doesn't make them any less severe and shouldn't be judged based on how neurotypical someone is.

I am “that poster” you are referring to and I was diagnosed as autistic as a child. So I’m not a neurotypical nor do I have an neurotypical opinion and I can’t always pass as one either. you are doing exactly what you accused me of and minimising my difficulties. The irony.
I’m aware autism is a spectrum. I have a mix of high functioning and low functioning symptoms. I can mask at times. I still don’t consider myself to be as autistic as someone who can’t function at all and can never mask or who has more severe symptoms over all in comparison to mine

ntmdino · 01/01/2025 14:40

zingally · 01/01/2025 14:15

Because 70-100+ years ago, all the children and adults with very severe, high care needs autism would have been insitutionalised. They'd have rarely been seen "out and about", so unless you have someone in your family or immediate social circle that you knew of, you could well have never known they existed.

Like my great aunt. By all accounts, she was very much like me - not high support needs as anybody here would see it, but still struggled. One day, some time in the 1920s, she had a meltdown in a public crowd as a teenager.

She was institutionalised. Years of electro-shock "therapy", drugs and at some point a lobotomy. She spent the last 50 years of her life stood at a window in the asylum, screaming. She died in the early 90s.

A life completely wasted, all because of one meltdown...and much more recent than people really want to admit.

sunshine244 · 01/01/2025 14:15

MerryMaker · 31/12/2024 16:19

@Lunedimiel except they do get a diagnosis. Someone who can work, have a happy marriage, kids and friends does not have a substantial impairment. They have difficulties, but they manage to overcome these to live a normal life.

That isn't necessarily true. My uncle married, had kids, had a very high level engineering job. The pressure of all of this broke him. He progressed from social anxiety to depression, panic attacks and a full breakdown in 40s. Rarely left the house again and took his own life in his 50s despite autism diagnosis and intensive mental health support.

This is why the low/high support needs terms are damaging. He would have been deemed high functioning but he wasn't. He was just high masking.

I've only realised I'm likely AuDHD since my kids were diagnosed. I'm now in my 40s and I'm definitely far more sensitive to a lot of things than I used to be, especially noise and busy places. I gather perimenopause often hugely exacerbates autism which is a worry.

zingally · 01/01/2025 14:15

Because 70-100+ years ago, all the children and adults with very severe, high care needs autism would have been insitutionalised. They'd have rarely been seen "out and about", so unless you have someone in your family or immediate social circle that you knew of, you could well have never known they existed.

SummerM00n · 01/01/2025 14:12

Ohthatsabitshit · 01/01/2025 13:26

Well if you are going to remark the level of impact mild, moderate and severe (does anyone actually do that?) then I think someone does fit in “mild” don’t they?
All nonsense if you can’t describe the different impacts for fear someone will feel unrecognised or minimised.

But nobody can have mild autism. Traits need to significantly impact life to get a diagnosis.

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