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To find this view re autism frustrating

483 replies

Pleasenomorespiders · 04/08/2026 19:25

Somebody today tried to argue that autism is simply a 'gift' because people like Einstein supposedly had it, I suppose they're talking about people on the spectrum being more gifted and talented in some areas.
This person must surely realise it's a spectrum and has failed to mention how debilitating autism can be, how much people with it can struggle in every aspect of life and may never be able to have a 'normal' life.

Calling it a 'gift' is nice, they're only thinking about high-functioning individuals who as I say have heightened awareness and notice patterns, artistically or mathematically gifted, or whatever it may be. Autism is simply not 'just seeing the world differently'. Many individuals will never have a job or a relationship.

OP posts:
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6
SupernaturalAddict · 06/08/2026 15:14

I'm not grateful for autism at all. If I could cure my son it wouldn't even be a question. I love both my sons more than anything in the world but I too wouldn't wish his life for him.

I think the superpower hash etc does do harm in terms of research. I wonder if more progress would have been made if the spectrum wasn't widened and all theindentity politics and tik tok autism hadn't have taken hold.

Sirzy · 06/08/2026 15:14

SleeplessInWherever · 06/08/2026 14:09

Elbows in our house. He licks elbows.

Mad little creature.

I often think some of the things we say/do as SENd parents would be genuinely unbelievable to others and just seem so bizarre to people who have neurotypical kids.

We are currently on holiday. This morning going down the breakfast DS (16!) ‘walked’ like a flamingo the whole way there clinging onto me for balance!

now we are back to hiding in the cabin while he watches train videos with me hoping he is able to leave for us to have some food later. Thankfully my mum is onboard too so can sit with him if I have to run to the buffet alone at least as he can’t be left alone.

x2boys · 06/08/2026 15:04

Sunnibee · 06/08/2026 14:52

I’ve worked with families who’ve suffered their children killing themselves because of what they endured growing up with an autistic sibling- damn right I’m grateful we don’t have autism in the family.

Nice to see you're doubling down.

I guess its these sorts of attitudes that are responsible for what happened when I told my 6 year old that her little sister had autism.
I was ready to explain what that meant when she quickly interrupted me and said: "I know what autism is, I don't want her to have it". Later she begged me to have another baby saying she'd never be able to play with her sister because autistic children "are horrible".

So, yeh, thanks for that.

Edited

Not everything is about you and your daughter
Autism is a masive spectrum and impacts everyone differently whilst i love my son more thzn anyhthing in the world i cam acknowlege this isnt the life i would have chosen
And im not offended by other posters saing they are greatful their child is profoundly autistic
Just like i wouodnt choose for my oldest son to be Diabetic

Sunnibee · 06/08/2026 14:52

Yourethebeerthief · 06/08/2026 13:56

This perspective doesn’t dominate society. That’s the problem. The push is more and more towards “neurospicy” with the hardest suffering families sidelined. People think autism is all Sheldon from the Big Bang Theory, not self-harm, screaming, pica, smearing, and attacking family members.

As I said before, when I’ve worked with families who’ve suffered their children killing themselves because of what they endured growing up with an autistic sibling- damn right I’m grateful we don’t have autism in the family.

I’ve worked with families who’ve suffered their children killing themselves because of what they endured growing up with an autistic sibling- damn right I’m grateful we don’t have autism in the family.

Nice to see you're doubling down.

I guess its these sorts of attitudes that are responsible for what happened when I told my 6 year old that her little sister had autism.
I was ready to explain what that meant when she quickly interrupted me and said: "I know what autism is, I don't want her to have it". Later she begged me to have another baby saying she'd never be able to play with her sister because autistic children "are horrible".

So, yeh, thanks for that.

TheFairCat · 06/08/2026 14:24

TurquoiseSloth · 06/08/2026 13:54

@TheFairCat have you looked into EOTAS?

The less complex of my two “in the middle” kids is at a special school for ND academically able children, while my more complex one has never fitted anywhere (and is just too hard work for us to cope with home ed, tbh… doesn’t sleep, in their own world, can’t cope with other kids so it’s a lonely life as cut off from home ed community, etc. and also has medical needs) and EOTAS has been the solution. It’s not an easy road though. I would home ed my less complex one if no suitable school as the hassle of EOTAS in our LA would be worse than the challenge of home ed, but for the higher needs one… it’s worth the hassle. It’s worth it for the therapeutic input being funded as well.

Yes, we have considered it, but like you say I think it would be a very long road. We took my daughter out of mainstream school in Y2, so in order to get EOTAS I think we would probably have to go to tribunal (with all that involves) just to get her into a specialist school that we would be fairly confident wouldn’t work out, wait for that to fail and then quite possibly go to tribunal again to try and get EOTAS. I’m just not sure I could put her (or us) through that and it could well take years.

Home ed is working pretty well for us. She goes to gymnastics, horse-riding/pony care and swimming weekly, which is really helping with her physical difficulties. She goes to tutor groups and has individual tutors for maths and English. She has friends (though this requires a fair amount of scaffolding from me).

I do resent the fact we have had to essentially develop our own alternative provision and are probably saving the LA tens of thousands of pounds a year, but I also think she’s getting the best education for her, so I try not to think about it!!

She’s also fairly easy company most of the time (as long as I’m
not trying to get her to brush her teeth). She loves animals and nature and we have a nice time visiting zoos and watching Steve Backshall documentaries! Alas my career is languishing in the gutter and our bank balance is no more….

Gwenhwyfar · 06/08/2026 14:20

x2boys · 06/08/2026 13:31

Yes thats interesting are they being diagnosed with anything else?

No, they're cured!

x2boys · 06/08/2026 14:13

SleeplessInWherever · 06/08/2026 14:09

Elbows in our house. He licks elbows.

Mad little creature.

I often think some of the things we say/do as SENd parents would be genuinely unbelievable to others and just seem so bizarre to people who have neurotypical kids.

So true 😂

SleeplessInWherever · 06/08/2026 14:09

x2boys · 06/08/2026 14:03

Oh definitlley
I couldnt love my son more if i tried
That doesnt mean its the life i woulsd have chosen
I have long since made my peace with it and accepted it for what is but things can be very challenging
One minute he can be pulling my hair and the next hes cuddled up to me kissing my eyebrows ( he has a thing about eyebtows )

Elbows in our house. He licks elbows.

Mad little creature.

I often think some of the things we say/do as SENd parents would be genuinely unbelievable to others and just seem so bizarre to people who have neurotypical kids.

x2boys · 06/08/2026 14:07

Yourethebeerthief · 06/08/2026 13:56

This perspective doesn’t dominate society. That’s the problem. The push is more and more towards “neurospicy” with the hardest suffering families sidelined. People think autism is all Sheldon from the Big Bang Theory, not self-harm, screaming, pica, smearing, and attacking family members.

As I said before, when I’ve worked with families who’ve suffered their children killing themselves because of what they endured growing up with an autistic sibling- damn right I’m grateful we don’t have autism in the family.

Honestley i dont know why people get so offended
My oldest son has type1 Diabetes
I wouldnt choose that for him either

x2boys · 06/08/2026 14:03

Yourethebeerthief · 06/08/2026 13:50

I understand. If our child was autistic I would love him every bit the same. It would be a lie to say that I’m not glad he doesn’t have a disability of any description however.

Oh definitlley
I couldnt love my son more if i tried
That doesnt mean its the life i woulsd have chosen
I have long since made my peace with it and accepted it for what is but things can be very challenging
One minute he can be pulling my hair and the next hes cuddled up to me kissing my eyebrows ( he has a thing about eyebtows )

Yourethebeerthief · 06/08/2026 13:56

Sunnibee · 06/08/2026 10:44

I agree it doesn't do any favours to make it seem all sunshine and roses. But we are very far from that reality.

Equally it doesn't do any favours to make it seem that it's all a picture of unrelenting misery. That is much closer to where we are at. It's incredibly harmful to allow this narrow perspective to dominate, with blanket statements like "I'm so grateful that no one in my family is autistic".

This perspective doesn’t dominate society. That’s the problem. The push is more and more towards “neurospicy” with the hardest suffering families sidelined. People think autism is all Sheldon from the Big Bang Theory, not self-harm, screaming, pica, smearing, and attacking family members.

As I said before, when I’ve worked with families who’ve suffered their children killing themselves because of what they endured growing up with an autistic sibling- damn right I’m grateful we don’t have autism in the family.

TurquoiseSloth · 06/08/2026 13:54

TheFairCat · 06/08/2026 13:29

Fantastic post, I couldn’t agree more. My daughter would probably also be considered a ‘level 2’ in that system and has another presentation altogether. She is probably either cognitively low average or has a mild learning disability (it’s impossible to say), which means she lacks the intellectual capacity to mitigate all the other challenges she has, yet she is well aware of her difficulties and wants to be able to do all the things her peers can.

She is sweet natured and empathetic, but extremely anxious and demand avoidant. She is verbal but has a language disorder that means she really struggles to keep up with fast-paced conversations and formulate sentences in a way that allows her to express her thoughts and ideas. She is socially motivated, but extremely young for her age and the gap seems to be getting wider as she gets older.

She has significant difficulties with fine and gross motor skills, low muscle tone and hyper mobile joints. She can read well and her comprehension is quite strong, but it’s very effortful because of her visual processing difficulties. She can’t write more than a couple of words at a time. Shouting, loud noises and other people’s distress are all overwhelming for her.

There are NO schools or other educational provisions locally that are even close to being appropriate for her. She’d be eaten alive in mainstream and all the specialist schools are either for children with complex needs and profound learning disabilities or neurodivergent children who struggle socially and emotionally and have sensory processing difficulties, but are academically able.

We are home educating as it is our only option. Our daughter is a lovely person, but her anxiety and repetitive questions etc can be very tiring. We try every day to make her as happy as possible and to have all the opportunities she deserves but it has required a great deal of sacrifice on our part and I have no idea what the future holds.

@TheFairCat have you looked into EOTAS?

The less complex of my two “in the middle” kids is at a special school for ND academically able children, while my more complex one has never fitted anywhere (and is just too hard work for us to cope with home ed, tbh… doesn’t sleep, in their own world, can’t cope with other kids so it’s a lonely life as cut off from home ed community, etc. and also has medical needs) and EOTAS has been the solution. It’s not an easy road though. I would home ed my less complex one if no suitable school as the hassle of EOTAS in our LA would be worse than the challenge of home ed, but for the higher needs one… it’s worth the hassle. It’s worth it for the therapeutic input being funded as well.

Yourethebeerthief · 06/08/2026 13:50

SleeplessInWherever · 06/08/2026 11:01

I’m not offended by what you said, in any way.

We love our complex needs son to death. He’s hilarious, engaging, and can be the happiest and most wholesome boy. He can be loving, caring and hugely rewarding. I’d defend him with my last breath.

But. There’s absolutely no denying our life is difficult. He breaks things, bites, my arms are covered in scratches. He shouts, throws things, slams doors until they break, self injures and headbutts walls. He sleeps terribly. He’ll never live fully independently, and planning for his adult life carries a lot of pressure.

I don’t think it’s in any way offensive to say that isn’t the life you’d choose, or to be grateful you don’t have it.

It doesn’t mean we love him any less, but I don’t expect someone not living it, who doesn’t know him or love him, to see it as something they’d wish for.

I understand. If our child was autistic I would love him every bit the same. It would be a lie to say that I’m not glad he doesn’t have a disability of any description however.

greenbean80 · 06/08/2026 13:32

My autistic 11 year old daughter is refusing to eat today… it’s really a ‘gift’ isn’t it

x2boys · 06/08/2026 13:31

Gwenhwyfar · 06/08/2026 13:26

I read an article recently about de-diagnosing, adults deciding the label doesn't fit any more. Apparently all the rage in Scandinavia now.

Yes thats interesting are they being diagnosed with anything else?

TheFairCat · 06/08/2026 13:29

TurquoiseSloth · 06/08/2026 12:43

I’m autistic (what would have previously been Asperger’s) and utterly detest the “autism is a gift/superpower” narrative. If people want to see themselves in that way that’s fine but it must be clear that it’s how they view their own, and only their own, autism (and same goes for every other kind of neurodivergence or disability).

However what’s always really clear throughout these kind of debates - including on this thread - is that the people who are in the middle are largely forgotten and left out of the discussion.

It’s always high IQ, often late diagnosed, Asperger’s type vs. severe/profound autism, incontinent, non-speaking. Number levels aren’t routinely used in the U.K. but it’s what would be level 1 vs. Level 3+.

There are also many people who land somewhere in the middle and they just seem to be forgotten.

Both my kids are in between and if given a level would be level 2. Both are exceptionally bright but both have needs that go well beyond what the old Asperger’s criteria covered. Their adaptive functioning is too low, difficulties in early childhood went well beyond social communication etc. People think all of the “bright and verbal” crowd are fairly low needs but it’s really not true and it’s not just burnout due to masking, social anxiety etc (not that those things don’t absolutely suck). Even within this “in between” space, one of mine has significantly higher needs than the other; they have numerous complex comorbidities though and it’s near impossible to disentangle those from autism entirely. On the surface you would think one has no speech and language difficulties and some would then immediately stick them in a category of “shouldn’t be diagnosed”.

Both kids are Gestalt Language Processors but with their sky-high intellects they have huge mental libraries of complex sentences and scripts so their language appears exceptionally advanced. However, their receptive language (what they understand) is below their expressive language (what they can say). Certain areas of receptive language are many years below chronological age. They have difficulties with transitions (one, severely). Both have areas of incredible talent, but one is too disabled to do anything with it really, and the other has substantial barriers to reaching their potential and will probably not have the career and opportunity they should have because their barriers are substantial. Both require specialist schooling. One has challenging behaviours and will likely need significant levels of care throughout their life; maybe both will, we don’t know yet.

There are also lots of people in this “in between” space who have a whole range of cognitive and verbal ability. Some will have a learning disability, some will be average, you’ll have the whole spread.
All will look different from each other.

So, can people please stop pretending that bright autistic people that can speak are all “Asperger’s type”, only really struggle with social communication and mental health, and that all of those very significantly affected by autism also have an intellectual disability and/or are non-speaking? There are people out there who don’t fit either box and I tell you what as well, there are no services, very little schooling options etc for kids like mine with the more unusual profiles. I know there’s a lack of options out there for all autistic people but there would be more for my kids if they had either lower autistic needs OR lower intellects and very obvious language delays.

I don’t know why this middle group aren’t really talked about - I suppose because they don’t really fit either side of the argument and typically neither have parents wanting to shout about what a gift their autistic existence is, nor those talking about caring for someone with that profound level of disability, and I suppose they will have - to varying degrees - the ability to understand what their parents and carers are saying about them, so people are less likely to be talking about how hard they are to look after and so on. Also the autistic adults in this middle ground are typically neither the loudly self-advocating-online type, nor very immediately obviously apparent when they go out in public as a group from a residential home for example, so they’re just sort of… hidden.

Fantastic post, I couldn’t agree more. My daughter would probably also be considered a ‘level 2’ in that system and has another presentation altogether. She is probably either cognitively low average or has a mild learning disability (it’s impossible to say), which means she lacks the intellectual capacity to mitigate all the other challenges she has, yet she is well aware of her difficulties and wants to be able to do all the things her peers can.

She is sweet natured and empathetic, but extremely anxious and demand avoidant. She is verbal but has a language disorder that means she really struggles to keep up with fast-paced conversations and formulate sentences in a way that allows her to express her thoughts and ideas. She is socially motivated, but extremely young for her age and the gap seems to be getting wider as she gets older.

She has significant difficulties with fine and gross motor skills, low muscle tone and hyper mobile joints. She can read well and her comprehension is quite strong, but it’s very effortful because of her visual processing difficulties. She can’t write more than a couple of words at a time. Shouting, loud noises and other people’s distress are all overwhelming for her.

There are NO schools or other educational provisions locally that are even close to being appropriate for her. She’d be eaten alive in mainstream and all the specialist schools are either for children with complex needs and profound learning disabilities or neurodivergent children who struggle socially and emotionally and have sensory processing difficulties, but are academically able.

We are home educating as it is our only option. Our daughter is a lovely person, but her anxiety and repetitive questions etc can be very tiring. We try every day to make her as happy as possible and to have all the opportunities she deserves but it has required a great deal of sacrifice on our part and I have no idea what the future holds.

Gwenhwyfar · 06/08/2026 13:26

Foofedifiknow · 05/08/2026 02:38

I read a book Over diagnosis recently where the author noted autism is primarily a problem with communication. Girls now diagnosed with autism and so called “masking” do not have a problem with communication. She argued that these new diagnoses are being constructed and newly created in the interest of “equality” and these over diagnosis carry a cost for those people with genuine adversity related to autism. Girls were being “undiagnosed” as they didn’t have it.

I read an article recently about de-diagnosing, adults deciding the label doesn't fit any more. Apparently all the rage in Scandinavia now.

aCatCalledFawkes · 06/08/2026 13:17

Sunnibee · 06/08/2026 11:21

Speaking as a parent of an autistic child with global developmental delay, what I find demeaning and harmful is the stigma. The attitudes - so readily and easily expressed on this thread - such as , I am so lucky not to have an autistic child, so grateful that there is no autism in our family, those "poor souls" etc. Yes my child has significant social and learning differences, yes there are challenges, but she's a whole person, just as delightful and valuable as any other child; her existence is not a misfortune.

Edited

I understand this actually. When your child gets an autism diagnosis, it can be a relief because you know what is going on and it can also be upsetting but the one thing you have to do is try to find a way through it and remember there still the child you have always known them to be.

One of my friends refers to my son's autism as a label, and makes sure she drops it in everytime we talk about it so now even though I might be having a tough time I don't want to talk to her about it anymore which obviously has an impact on my mental health.

Neuronimo · 06/08/2026 12:53

I agree. We are a family of three, each on the spectrum. Ds has had massive developmental challenges to overcome and I have become pretty reclusive over the years, due to complete overwhelm. I certainly see the challenges of autism more than the gifts, even in the higher functioning neuro diverse population. Dh is more gifted in some ways, but struggles daily.

We each have our own strengths and weaknesses, but then so do the neuro typical population. It seems to be a way of othering, which feels patronising to me.

Coldhot · 06/08/2026 12:52

Thank you for that @TurquoiseSloth, very well said.
This is our experience too.

TurquoiseSloth · 06/08/2026 12:43

I’m autistic (what would have previously been Asperger’s) and utterly detest the “autism is a gift/superpower” narrative. If people want to see themselves in that way that’s fine but it must be clear that it’s how they view their own, and only their own, autism (and same goes for every other kind of neurodivergence or disability).

However what’s always really clear throughout these kind of debates - including on this thread - is that the people who are in the middle are largely forgotten and left out of the discussion.

It’s always high IQ, often late diagnosed, Asperger’s type vs. severe/profound autism, incontinent, non-speaking. Number levels aren’t routinely used in the U.K. but it’s what would be level 1 vs. Level 3+.

There are also many people who land somewhere in the middle and they just seem to be forgotten.

Both my kids are in between and if given a level would be level 2. Both are exceptionally bright but both have needs that go well beyond what the old Asperger’s criteria covered. Their adaptive functioning is too low, difficulties in early childhood went well beyond social communication etc. People think all of the “bright and verbal” crowd are fairly low needs but it’s really not true and it’s not just burnout due to masking, social anxiety etc (not that those things don’t absolutely suck). Even within this “in between” space, one of mine has significantly higher needs than the other; they have numerous complex comorbidities though and it’s near impossible to disentangle those from autism entirely. On the surface you would think one has no speech and language difficulties and some would then immediately stick them in a category of “shouldn’t be diagnosed”.

Both kids are Gestalt Language Processors but with their sky-high intellects they have huge mental libraries of complex sentences and scripts so their language appears exceptionally advanced. However, their receptive language (what they understand) is below their expressive language (what they can say). Certain areas of receptive language are many years below chronological age. They have difficulties with transitions (one, severely). Both have areas of incredible talent, but one is too disabled to do anything with it really, and the other has substantial barriers to reaching their potential and will probably not have the career and opportunity they should have because their barriers are substantial. Both require specialist schooling. One has challenging behaviours and will likely need significant levels of care throughout their life; maybe both will, we don’t know yet.

There are also lots of people in this “in between” space who have a whole range of cognitive and verbal ability. Some will have a learning disability, some will be average, you’ll have the whole spread.
All will look different from each other.

So, can people please stop pretending that bright autistic people that can speak are all “Asperger’s type”, only really struggle with social communication and mental health, and that all of those very significantly affected by autism also have an intellectual disability and/or are non-speaking? There are people out there who don’t fit either box and I tell you what as well, there are no services, very little schooling options etc for kids like mine with the more unusual profiles. I know there’s a lack of options out there for all autistic people but there would be more for my kids if they had either lower autistic needs OR lower intellects and very obvious language delays.

I don’t know why this middle group aren’t really talked about - I suppose because they don’t really fit either side of the argument and typically neither have parents wanting to shout about what a gift their autistic existence is, nor those talking about caring for someone with that profound level of disability, and I suppose they will have - to varying degrees - the ability to understand what their parents and carers are saying about them, so people are less likely to be talking about how hard they are to look after and so on. Also the autistic adults in this middle ground are typically neither the loudly self-advocating-online type, nor very immediately obviously apparent when they go out in public as a group from a residential home for example, so they’re just sort of… hidden.

x2boys · 06/08/2026 12:34

TigerRag · 06/08/2026 12:05

I don't like neurospicy either. It's like a think it's little quirks. When I've said I'm disabled by it, people have hushed me because that's not their experience. But why isn't my experience just as valid?

Its so frustrating
The "isnt autism wonderful crowd " dont want to hear any negatives

ReleaseTheDucksOfWar · 06/08/2026 12:19

DontBuyAnotherBook · 05/08/2026 11:06

I was told I shouldn't say that summer holidays for SEN children and their parents are hard because it means I am saying ND children are a burden and she loves having her ND children at home whilst mine is constantly destroying the house.

Just had my son confirmed as autistic today at four.

God. How did you not slap the smug cow?

TigerRag · 06/08/2026 12:05

I don't like neurospicy either. It's like a think it's little quirks. When I've said I'm disabled by it, people have hushed me because that's not their experience. But why isn't my experience just as valid?

Sunnibee · 06/08/2026 12:00

Coldhot · 06/08/2026 11:37

I agree with this too, yet I have to say if I could take my DS’s difficulties away without changing his personality I’d do it in a heartbeat.
There is a lot of suffering in his life that is very, very difficult to see. I would do anything to take that from him but I don’t know how or even if it’s possible and the help just isn’t there.

Definitely same xx