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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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?

OP posts:
Thread gallery
5
Expectperspect · 31/12/2024 13:49

WhatterySquash · 31/12/2024 13:24

That's the thing though. The way people monetise and make autism "fashionable" does make it harder for those who have more significant struggles with it and who are then sidelined by the media and the popular image of it. When I say this, I'm joining in the discussion about why anyone would "want" autism or how anyone could possibly benefit from it, as well as the discussion about its apparent prevalence. I'm not thereby dissing or disbelieving everyone who has it - far from it. But like it or not, it is fashionable and seen as a plus point in many arty/creative circles and this is exploited. Others on the thread have also mentioned parents who exploit it for social media.

There is already a huge and acrimonious debate within autism circles/organisations about the way the most vocal, and what some might call "functioning", and often the self-diagnosed, dominate the conversation, and claim autism as only a positive thing when for some people with it and their parents it's anything but.

To be cynical (or "bitter") about this – I agree I'm cynical, I don't feel bitter – is reasonable IMO, and I feel that way because I do think those more severely affected or who struggle the most should get the majority of the attention and resources.

I do speak as someone with ASD in my immediate family. I think it's OK to criticise exploitation of it. This doesn't equate to criticising everyone who has it or being unsympathetic - can you see that?

This is interesting. When i think about it there are lots of high functioning autism in my field (finance) and school (high academic grammar).

Ohthatsabitshit · 31/12/2024 15:07

It would be easier to concentrate on the focus of the question which is an increase in numbers of severely disabled autistics. The severity of the impact of the disability is what the OP was focused on. Sadly the merging of Autism (low and high functioning (IQ)) and Asperger’s and PDD(nos) into the single diagnosis ASD and the flood of loud and easily offended self diagnosed has made it almost impossible to get any real sense of what is happening.

MerryMaker · 31/12/2024 16:02

BertieBotts · 30/12/2024 23:38

My aunt used to work in a mainstream school with mostly undiagnosed but very likely autistic/ADHD pupils - they were on the verge of being expelled. Some of them had been through several schools already. What often used to happen with those children was that they were shunted from school to school, until eventually the parents gave up and homeschooled them, or they were given a place at a special school (which were then mostly closed down) or they were of secondary age which meant they moved to secondary schools where they could much more easily bunk off and nobody bothered chasing them very hard, probably because they didn't want disruptive children in class anyway.

Schools don't have the budget to hire people like my aunt now, and they are discouraged from expelling pupils plus there aren't any special schools for the majority of "disruptive" children so they just stay in the classes they aren't coping in. But they have always existed even if you didn't see them in schools 30 years ago.

The numbers have increased massively.
I know plenty of adults who did get qualifications, who work and are married who say they have ASD and ADHD. It is simply untrue to say that all of these children in the past bunked off

MerryMaker · 31/12/2024 16:11

Ohthatsabitshit · 31/12/2024 15:07

It would be easier to concentrate on the focus of the question which is an increase in numbers of severely disabled autistics. The severity of the impact of the disability is what the OP was focused on. Sadly the merging of Autism (low and high functioning (IQ)) and Asperger’s and PDD(nos) into the single diagnosis ASD and the flood of loud and easily offended self diagnosed has made it almost impossible to get any real sense of what is happening.

I agree. ASD needs to be sub divided. Those with less complex ASD may need adjustments at work or school, but they can largely manage with simple adjustments.
There are those who will never live independently and never work, many non verbal. These are the people who would either be cared for their family forever in the past or be institutionalised. Now days we also offer small group homes.
Then the middle ground, who can work and live by themselves, but may need ongoing family help and some extra help at school. My nephew falls into this bracket. He has no real friends, is unlikely ever to marry, but works and lives in his own place. He struggles with some things, but family help him out. The key with this group is finding suitable work and an understanding employer. There is no point talking about disability adjustments with any job, as people in this group can never do some jobs no matter how many adjustments you make. They need support and guidance to translate their interests into a job they can manage.

Lunedimiel · 31/12/2024 16:16

WhatterySquash · 31/12/2024 13:24

That's the thing though. The way people monetise and make autism "fashionable" does make it harder for those who have more significant struggles with it and who are then sidelined by the media and the popular image of it. When I say this, I'm joining in the discussion about why anyone would "want" autism or how anyone could possibly benefit from it, as well as the discussion about its apparent prevalence. I'm not thereby dissing or disbelieving everyone who has it - far from it. But like it or not, it is fashionable and seen as a plus point in many arty/creative circles and this is exploited. Others on the thread have also mentioned parents who exploit it for social media.

There is already a huge and acrimonious debate within autism circles/organisations about the way the most vocal, and what some might call "functioning", and often the self-diagnosed, dominate the conversation, and claim autism as only a positive thing when for some people with it and their parents it's anything but.

To be cynical (or "bitter") about this – I agree I'm cynical, I don't feel bitter – is reasonable IMO, and I feel that way because I do think those more severely affected or who struggle the most should get the majority of the attention and resources.

I do speak as someone with ASD in my immediate family. I think it's OK to criticise exploitation of it. This doesn't equate to criticising everyone who has it or being unsympathetic - can you see that?

No, I think you are repeating a slur that serves to delegitimise the rights and needs of disabled people to be included in society. We fight this battle everyday and this reactionary narrative is what justifies inequality and exclusion.

Autistic people describe themselves in different ways. You don't get to say their choices are wrong. No one gets a diagnosis without substantial impairments in key aspects of life so really don't put autistic people in a hierarchy or suggest only some needs are deserving. Every autistic person's needs should be met whether or not they have co-ccurring conditions. Equality legislation was hard fought for by disabled people in this country and is still only complied with on a patchy basis.

Your narrative is the exact same one used in the 80s when women started to break into formerly male professions; they were never there due to merit, but because hiring a woman was now the thing to be seen to do. These narratives are about privilege and power.

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.

BrightYellowTrain · 31/12/2024 16:29

If someone has a diagnosis, they have been judged to meet the diagnostic criteria as set out is the DSM-5 or ICD-11. It isn’t for you to judge they don’t. If you feel HCPs are acting unprofessionally by inappropriately diagnosing people, report them.

MerryMaker · 31/12/2024 16:35

@BrightYellowTrain They do meet the diagnosis. The diagnosis is based on self reported symptoms.

BrightYellowTrain · 31/12/2024 16:37

A diagnosis isn’t only based on self reported symptoms.

Lunedimiel · 31/12/2024 16:37

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.

Honestly, where to start.

Have a think about the incidence of mental health conditions; 80% of autistic people are diagnosed with at least one mental illness in their lifetime, compared to 26% of the general population. Have a think about the fact that autistic people are 7 times more likely to attempt suicide than non-autistic people. Have a think about the fact that only 10% of autistic people work full time. Have a think about the prevalence of interpersonal victimisation of autistic people running at 86% (across bullying, sexual victimisation, child abuse). And finally have a think about the reduction in life expectancy of 6.14 (m)/6.45(f) years of autistic adults without an intellectual disability.

What's normal here? Why are you so quick to deny others people's experiences?

MerryMaker · 31/12/2024 16:41

@Lunedimiel They have an impairment, but not a substantial one.
Most people with ASD do not work, marry, have kids and have friends. If you do your impairment is not substantial.

buttonousmaximous · 31/12/2024 16:43

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.

Define normal? Who are you to decide that every married autistic person must have overcome their autism? You don't know what peoples experiences are or what's manageable for them.

MerryMaker · 31/12/2024 16:45

@buttonousmaximous fine people living a totally normal life with some struggles should be defined as substantially impaired??

Getting and holding down a job, getting married, having kids and raising them, getting and keeping friends - none of this is easy for anyone. No one waltzes into having all this in their life. For someone with ASD to achieve all this, they do not have substantial impairment.

Lunedimiel · 31/12/2024 16:47

MerryMaker · 31/12/2024 16:41

@Lunedimiel They have an impairment, but not a substantial one.
Most people with ASD do not work, marry, have kids and have friends. If you do your impairment is not substantial.

Plenty of people do these things and struggle profoundly. Often adjustments of various sorts are required but people are still unable to function in the way society deems 'normal'. You don't get a diagnosis without evidence of significant impairment in key areas. Is this about your capacity to imagine how life might be for other autistic people?

BrightYellowTrain · 31/12/2024 16:51

Neither the DSM nor the ICD actually use ‘substantial impairment’ anymore. The DSM-5 uses ‘clinically significant impairment’ (so just because it isn’t apparent to a random MNer doesn’t mean it isn’t clinically significant) and the ICD-11 states “The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, such that their deficits may not be apparent to others. A diagnosis of Autism Spectrum Disorder is still appropriate in such cases.” (So, again, may not be apparent to a random MNer.)

Ohthatsabitshit · 31/12/2024 17:03

Same old outrage same old discussion. Honestly I think those demanding that their struggles are equal to all autistics struggles while marrying, having children working and doing all the other stuff just don’t understand what some more severely impacted autistics lives are like. Perhaps they have never met an autistic adult who cannot speak or feed themselves or don’t understand how limited a life can be. It is NOT offensive to say there is a difference. Someone up thread quoted life expectancy reduced by 6 to 7 years. It’s laughable in the face of a life expectancy of 40 for autistics with lower or less measurable IQ. Wake up, because if you really believe that ASD becomes more severe with each generation and you have that dx it’s your children and grandchildren’s plight you are minimising to inflate your own. You don’t need to endlessly reiterate how impacted you are by being autistic or refuse to see that others might find it even harder and face much huger hurdles.

Lunedimiel · 31/12/2024 17:07

Ohthatsabitshit · 31/12/2024 17:03

Same old outrage same old discussion. Honestly I think those demanding that their struggles are equal to all autistics struggles while marrying, having children working and doing all the other stuff just don’t understand what some more severely impacted autistics lives are like. Perhaps they have never met an autistic adult who cannot speak or feed themselves or don’t understand how limited a life can be. It is NOT offensive to say there is a difference. Someone up thread quoted life expectancy reduced by 6 to 7 years. It’s laughable in the face of a life expectancy of 40 for autistics with lower or less measurable IQ. Wake up, because if you really believe that ASD becomes more severe with each generation and you have that dx it’s your children and grandchildren’s plight you are minimising to inflate your own. You don’t need to endlessly reiterate how impacted you are by being autistic or refuse to see that others might find it even harder and face much huger hurdles.

a) It is not a competition.
b) Of course people with intellectual disabilities as well as autism can have profound needs.
c) Not all autistic people have intellectual disabilities. This does not mean they do not have significant impairments in key areas of life.

BrightYellowTrain · 31/12/2024 17:09

Difficulties are different (but that applies equally before the split was made. Not everyone with the same diagnosis has the same presentation or needs.) That doesn’t mean they don’t meet the diagnostic criteria or that they are any less autistic.

Everyone can post statistics to support their view point. For example, autistic people without a co-morbid LD are more likely to die by suicide than those with ASD and a co-morbid LD. The most at risk are autistic women without a co-morbid LD who are 13 times more likely to die by suicide than non-autistic women.

ntmdino · 31/12/2024 17:10

MerryMaker · 31/12/2024 16:41

@Lunedimiel They have an impairment, but not a substantial one.
Most people with ASD do not work, marry, have kids and have friends. If you do your impairment is not substantial.

That's absolute horseshit. The diagnostic criteria requires significant impairment (it was "substantial" when I was diagnosed). Your personal feelings on the matter don't enter into it, and the definition of clinically-significant impairment isn't yours to make.

The point is that autism impairment varies from day to day as well as over a lifetime; what you see might be constant, but what's actually happening under the hood isn't.

I tick all those boxes - I have never been unemployed, I'm married, I have a daughter and I have friends. Since I've gotten older, I've become much less able to mask and put off the shutdowns, and I require significant accommodations from my employer in order to maintain a job because I have whole weeks where I just can't handle demands of any kind - and without my diagnosis there's no way I could justify that enough for them. I wouldn't be able to cope with life in general without the infinite patience and help from my other half. My friends all have to accept that they'll go without contact from me for months at a time.

None of this was true 10 years ago, because I was expending all my energy to appear "normal" so as not to be completely outcast from society, and spending all my evenings and weekends in a dark room recovering and recharging.

So, under your definitions, I should just become a shut-in and retreat from society, I'm not entitled to any help at all, and what? I should just suck it up?

FFS.

BrightYellowTrain · 31/12/2024 17:16

According to the National Autistic Society’s statistics that were updated earlier this year:

“On average, autistic men without a learning disability had an estimated life expectancy of 74.6 years, and autistic women without a learning disability had an average of 76.8 years. For autistic people who also had a diagnosed learning disability, average estimated life expectancies were lower, with men having a life expectancy of 71.7 years and women having a life expectancy of 69.6 years. These estimates all have a degree of uncertainty, particularly for women due to the smaller numbers of women who have been diagnosed autistic.”

So, lower but not as low as in the 40s.

lleeggoo · 31/12/2024 17:22

It doesn't matter what the opening post is, if it's about autism you can guarantee people will start playing fucking top trumps.

There are variations in many medical conditions, all with the same 'name' or 'diagnosis' - the important part is that the person is treated as an individual so their needs can be met/any treatment given. Doctors don't just look at a diagnosis, no medic does. They look at the person, at the individual. That's what any support is based on. This 'my DC autism is worse than yours' gets everybody nowhere. Backwards even.

Worriedmotheroftwo · 31/12/2024 17:23

ntmdino · 31/12/2024 17:10

That's absolute horseshit. The diagnostic criteria requires significant impairment (it was "substantial" when I was diagnosed). Your personal feelings on the matter don't enter into it, and the definition of clinically-significant impairment isn't yours to make.

The point is that autism impairment varies from day to day as well as over a lifetime; what you see might be constant, but what's actually happening under the hood isn't.

I tick all those boxes - I have never been unemployed, I'm married, I have a daughter and I have friends. Since I've gotten older, I've become much less able to mask and put off the shutdowns, and I require significant accommodations from my employer in order to maintain a job because I have whole weeks where I just can't handle demands of any kind - and without my diagnosis there's no way I could justify that enough for them. I wouldn't be able to cope with life in general without the infinite patience and help from my other half. My friends all have to accept that they'll go without contact from me for months at a time.

None of this was true 10 years ago, because I was expending all my energy to appear "normal" so as not to be completely outcast from society, and spending all my evenings and weekends in a dark room recovering and recharging.

So, under your definitions, I should just become a shut-in and retreat from society, I'm not entitled to any help at all, and what? I should just suck it up?

FFS.

Edited

You're spot on.

The poster who said
Most people with ASD do not work, marry, have kids and have friends. If you do your impairment is not substantial
is completely ignorant.

Ohthatsabitshit · 31/12/2024 17:26

I think it was a study from Denmark? It came out some years ago that said 40. There was lots of distress in the press (and on MN) about it at the time. Realistically if you add huge numbers of less overtly autistic people to the population the life expectancy will shift. I don’t believe they are the same or should ever have been lumped together but we are where we are.

Ohthatsabitshit · 31/12/2024 17:28

Worriedmotheroftwo · 31/12/2024 17:23

You're spot on.

The poster who said
Most people with ASD do not work, marry, have kids and have friends. If you do your impairment is not substantial
is completely ignorant.

Is that true? Do most people with ASD have jobs and families now? If that is true that is a TOTALLY different group of people than even a decade ago.

BrightYellowTrain · 31/12/2024 17:29

NAS’s statistics are based on more up to date research.

Trying to brush the increase in life expectancy off as because of “huge numbers of less overtly autistic people to the population” fails to understand the statistics. They break down life expectancy into those with autism with a LD and those with autism without a LD. And even the former has a higher life expectancy than in the 40s.

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