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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To find this view re autism frustrating

446 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:
Thread gallery
6
Coldhot · Yesterday 00:41

morehairneeded · Yesterday 00:25

I have ADHD but not autism but I'm interested in the debate around language going on in the autism community. I have some understanding why some believe terms like "profound autism" should not be used although I can't quite decide what my own position would be on the matter. Are you allowed to say that someone has autism and is profoundly disabled by it or is that seen as the same thing as saying someone has profound autism?

I think that those families most affected by profound autism seem to be in favour of the term, and in splitting the diagnosis. That’s my understanding of it anyway, but I’m open to correction. My impression was those opposed to it generally have a different type of autism?

I remember being scolded on here once or twice because I said DS ‘had autism’ rather than saying he ‘was autistic’. I’m not a fan of policing people’s language, especially when they’re talking about their own families! Any ‘consensus’ that has been reached by the autistic community isn’t really a consensus imho, as many people either haven’t been asked for their opinions, or are not in a position to give them. And sometimes the opinions of parents or carers ‘don’t count’, which is clearly a nonsense.

LastMinuteAgain · Yesterday 00:41

x2boys · 06/08/2026 23:40

Wether he was truely autistic or wether it was his genetic condtion that made him appear autistc i dont know but he certainly presented as autistic
And Raymond in the film very much presented as autistic
My son has 16p13.11 microdeltion syndrome this is apparently the underlying cause of his autsim or is it
Maybe its just that it makes him present as autistic
In his case it doesnt really matter hes treated as severly/ proundly autistic because thats how he presents

As Autism can only be diagnosed from observation of and reported behaviour, if he meets the criteria he is Autistic surely.

I know Rhetts is an exception because its regressive, and I think I unconsciously assumed Angleman and FG were because of the characteristic social traits in both are different from Autism, but as I said that should apply to Down Syndrome in that case, but a Duel diagnosis of Down Syndrome and Autism is not uncommon.

I'm pretty sure an Angleman diagnosis rules out an Autism diagnosis - I wonder why now

An ADHD diagnosis used to rule out an Autism diagnosis and vice versa, so quite likely it'll change again with the next iteration of the ICD and DSM. Aside from genetic testing Autism diagnosis is not definitively objective however many questionnaires, coded behavioural observation scores, interviews etc.

Which actually reminds me that standard assessment methods like the ADOS-2 produce severity scores - I wonder why scores over the threshold= Autism diagnosis but discussing severity is absolutely taboo...

My pet hate is that with only one diagnosis available and the policing of the language which would allow discussion of the fact that some individuals are more disabled by their Autism than others. Those whose Autism we are told we may not quantify as severe or profound, are dismissed and made invisible by the flippant dismissal that their issues are solely down to the with/ without learning disabilities qualifier. "Isn't that just the learning disabilities, not Autism?" Prompt the head tilters who think they themselves are probably on the spectrum because they don't like to turn the camera on for Teams meetings ...

Pairlesssocks · Yesterday 00:34

Wether he was truely autistic or wether it was his genetic condtion that made him appear autistc

Are they only ‘truely autistic’ if no genetic cause is found? Or is it only when they have a genetic cause but no comorbidities? Does this include ADHD? Perhaps then no one is ‘truely autistic’ but rather they have an unidentified genetic condition?

morehairneeded · Yesterday 00:25

LastMinuteAgain · 06/08/2026 22:11

The policing of language by the online advocate community is what makes it especially difficult - we are not "allowed" to say profound Autism (although there has been a push from the National Autism Centre in the USA for the term to be recognised as a support needs category beyond the "level 3", there have also been indications it will be tied to a maximum IQ of 50, which makes a mockery of the definition as it reduces it to "Autism with moderate or severe learning disabilities". That's before mentioning the difficulty of testing IQ in a population whose social communication is impacted to such a degree that they not only cannot access verbal IQ tests, they don't engage with Raven's progressive matrixes or other standard non verbal IQ tests - they simply don't engage with communication, but can demonstrate astonishing feats of memory or patern recognition on their own terms.

In my experience of working with individuals with a duel Autism and learning disabilities diagnosis, some of them are far less intellectually disabled than their diagnosis, but their Autism is what actually disables them.

I have ADHD but not autism but I'm interested in the debate around language going on in the autism community. I have some understanding why some believe terms like "profound autism" should not be used although I can't quite decide what my own position would be on the matter. Are you allowed to say that someone has autism and is profoundly disabled by it or is that seen as the same thing as saying someone has profound autism?

LastMinuteAgain · Yesterday 00:06

Pairlesssocks · 06/08/2026 23:19

But this is the whole issue. Many with FG syndrome are diagnosed as autistic when in reality autism-type symptoms are part of FG syndrome. This is the case with hundreds, possibly thousands, of other syndrome including fragile x, Down’s syndrome, ED syndrome, FASD…. Many of these syndromes, mostly caused by genetic conditions, are only now being identified. Once identified they can give a much better picture of the individual, including associated physical symptoms in many cases, than saying ‘autism comorbid with…’. Though the loud online autism community did their best to try and disrupt work identifying these genetic syndromes.

Yes, I see your point.

I totally agree that lots of genetic syndromes are massively correlated with Autism - Fragile x, Phelan-McDeemid, Tuberous Sclerosis, Pitt Hopkins, ... but then Angleman and Rhetts are explicitly differential diagnoses despite huge symptomatic similarities. The stereotypically affable personality and distinctive physical traits of FG made me assume it's also a differential diagnosis, but perhaps not - the same could be said for Downs, and I've worked with multiple individuals with dual Down Syndrome - Autism diagnoses.

saraclara · 06/08/2026 23:59

Sunnibee · 06/08/2026 10:14

Well speaking of the mum of the most delightful little human with autism and global developmental delay, i can tell you that I am so lucky to be her mother. Yes there are challenges , yes sometimes it hard, but also getting to know and love her has been of the most enriching experiences of my life. I also have other children- they are neurotypical, . although my autistic child has significant social and learning differences compared to the others, there are also some aspects of parenting her that are actually easier not to mention uniquely joyful.

In really glad for you. The scope of autism and the effects on those around those diagnosed, is huge though.

My friend has an extremely affected autistic child. The child's quality of life is very poor and is they are in deep, unreachable distress much if the time. My friend has had a breakdown, and their spouse is also suffering with mental health problems.

They love their child deeply, but the condition has broken all three of them. And there's no light at the end of the tunnel. Just fear for his future.

x2boys · 06/08/2026 23:40

LastMinuteAgain · 06/08/2026 23:05

Kim Peek wasn't Autistic, he had FG syndrome (which most significantly includes structural neurological abnormalities, but lots of other symptoms completely distinct from Autism).

Wether he was truely autistic or wether it was his genetic condtion that made him appear autistc i dont know but he certainly presented as autistic
And Raymond in the film very much presented as autistic
My son has 16p13.11 microdeltion syndrome this is apparently the underlying cause of his autsim or is it
Maybe its just that it makes him present as autistic
In his case it doesnt really matter hes treated as severly/ proundly autistic because thats how he presents

Pairlesssocks · 06/08/2026 23:19

LastMinuteAgain · 06/08/2026 23:05

Kim Peek wasn't Autistic, he had FG syndrome (which most significantly includes structural neurological abnormalities, but lots of other symptoms completely distinct from Autism).

But this is the whole issue. Many with FG syndrome are diagnosed as autistic when in reality autism-type symptoms are part of FG syndrome. This is the case with hundreds, possibly thousands, of other syndrome including fragile x, Down’s syndrome, ED syndrome, FASD…. Many of these syndromes, mostly caused by genetic conditions, are only now being identified. Once identified they can give a much better picture of the individual, including associated physical symptoms in many cases, than saying ‘autism comorbid with…’. Though the loud online autism community did their best to try and disrupt work identifying these genetic syndromes.

LastMinuteAgain · 06/08/2026 23:05

x2boys · 06/08/2026 19:36

Rainman was based on a actual person
Its just one representation of autism and there are so many different representations

Kim Peek wasn't Autistic, he had FG syndrome (which most significantly includes structural neurological abnormalities, but lots of other symptoms completely distinct from Autism).

Pairlesssocks · 06/08/2026 22:48

JustMarriedBecca · 06/08/2026 22:27

Her test scores as against her peers based on nationalised tests over the last 8 years.

So school testing not standardised cognitive testing? School tests will depend heavily on ability to access learning at school, support for tests, how good the school is at teaching for those tests, when her birthday is etc. Standardised cognitive testing should rule out such confounding. Nonetheless being mostly top of your class is a great place to be.

x2boys · 06/08/2026 22:37

SleeplessInWherever · 06/08/2026 21:57

I think PP is referring to children like mine.

My son is front, centre and all angles of everything we do. Everything. And I wouldn’t have it any other way.

He does have challenges, but there’s no two ways around it - those challenges make it challenging for the people around him too.

When you’ve got a 9 year old, who is the same size as a 15 year old, tearing your hair out because his porridge is the wrong consistency. Or biting you because he liked beans yesterday but doesn’t today, that is a misfortune. Whether you like the phrasing or not.

I can’t be left unattended with our son for any length of time, because he’s stronger than me. When I get him dressed, my partner stands guard close by incase he needs to rush in.

They’re not just his challenges. They’re all of ours. He has no siblings, on purpose, because it would be a challenge for them too.

So yes, we absolutely love him to the very end of the universe, but it’s not unreasonable when talking about children like him to recognise how very difficult it can be to be in their lives, and it’s not unreasonable that people who don’t live like us are not envious of our situation.

I hope the school holidays are going ok
My son has a package of respite care for which im very greatful
Hes having 3 days a week in special needs holiday club and he gets four overnight s a month which is working out a roughly once a week
But he has been displaying very challenging behaviour at times and i was asked to pick him up one evening
So its not the restful time it should be as im always worried i will get a phone call.

JustMarriedBecca · 06/08/2026 22:27

dancehysterical151 · 06/08/2026 10:27

Where did you get proof that ‘intellectually she is in the top 0.5% of the country’?

Her test scores as against her peers based on nationalised tests over the last 8 years.

Yourethebeerthief · 06/08/2026 22:17

Sunnibee · 06/08/2026 22:12

I hear you, and I'm so sorry for the struggles you and your family live with every day. I don't have any objection to what you've written here, and I don't doubt how difficult your situation is alongside the love you clearly have for your son.

I wasn't objecting to parents honestly sharing these devastating realities and experiences. I think it's entirely possible to acknowledge the immense challenges some families face without making sweeping generalisations , and reinforcing the harmful idea that autistic children are always a misfortune in themselves and a curse on their families. Those are two different conversations, and my concern was with the latter, not with parents honestly describing their lived experience.

Edited

Your concern is misplaced because at no point have I said that all autistic children are always a misfortune. Clearly not, with the breadth of diagnostic criteria we have now.

I speak for the families I know who live in the seventh circle of hell because of autism.

You are rankled by what I’ve said because your child is autistic. But I am not speaking about you or your child.

Sunnibee · 06/08/2026 22:12

SleeplessInWherever · 06/08/2026 21:57

I think PP is referring to children like mine.

My son is front, centre and all angles of everything we do. Everything. And I wouldn’t have it any other way.

He does have challenges, but there’s no two ways around it - those challenges make it challenging for the people around him too.

When you’ve got a 9 year old, who is the same size as a 15 year old, tearing your hair out because his porridge is the wrong consistency. Or biting you because he liked beans yesterday but doesn’t today, that is a misfortune. Whether you like the phrasing or not.

I can’t be left unattended with our son for any length of time, because he’s stronger than me. When I get him dressed, my partner stands guard close by incase he needs to rush in.

They’re not just his challenges. They’re all of ours. He has no siblings, on purpose, because it would be a challenge for them too.

So yes, we absolutely love him to the very end of the universe, but it’s not unreasonable when talking about children like him to recognise how very difficult it can be to be in their lives, and it’s not unreasonable that people who don’t live like us are not envious of our situation.

I hear you, and I'm so sorry for the struggles you and your family live with every day. I don't have any objection to what you've written here, and I don't doubt how difficult your situation is alongside the love you clearly have for your son.

I wasn't objecting to parents honestly sharing these devastating realities and experiences. I think it's entirely possible to acknowledge the immense challenges some families face without making sweeping generalisations , and reinforcing the harmful idea that autistic children are always a misfortune in themselves and a curse on their families. Those are two different conversations, and my concern was with the latter, not with parents honestly describing their lived experience.

LastMinuteAgain · 06/08/2026 22:11

Yourethebeerthief · 06/08/2026 21:55

No, of course there aren’t. I agree. It is just immensely frustrating to see the other “half” of the autism experience brushed under the carpet. People do not like the reality of profound autism.

The policing of language by the online advocate community is what makes it especially difficult - we are not "allowed" to say profound Autism (although there has been a push from the National Autism Centre in the USA for the term to be recognised as a support needs category beyond the "level 3", there have also been indications it will be tied to a maximum IQ of 50, which makes a mockery of the definition as it reduces it to "Autism with moderate or severe learning disabilities". That's before mentioning the difficulty of testing IQ in a population whose social communication is impacted to such a degree that they not only cannot access verbal IQ tests, they don't engage with Raven's progressive matrixes or other standard non verbal IQ tests - they simply don't engage with communication, but can demonstrate astonishing feats of memory or patern recognition on their own terms.

In my experience of working with individuals with a duel Autism and learning disabilities diagnosis, some of them are far less intellectually disabled than their diagnosis, but their Autism is what actually disables them.

SleeplessInWherever · 06/08/2026 21:57

Sunnibee · 06/08/2026 21:29

There is a difference between acknowledging that some disabilities bring additional challenges and repeatedly framing autism itself as something that is inherently negative or something to be grateful to have avoided.

When people hear repeated statements that autism is a "curse", or that someone is glad their child does not have it, it contributes to a wider message about autistic people and children: that their existence is something undesirable.

That is the stigma I am objecting to. The kind of stigma that has already affected my 6 year old when she understands so little.

I absolutely understand wanting to protect your child from suffering. Every parent wants that. But I disagree with the idea that autism is simply a tragedy to be avoided. Autism is not just a list of challenges. Autistic people have humour, creativity, insight, joy, relationships, passions and their own unique ways of seeing and engaging with the world. Those things matter too.

I think PP is referring to children like mine.

My son is front, centre and all angles of everything we do. Everything. And I wouldn’t have it any other way.

He does have challenges, but there’s no two ways around it - those challenges make it challenging for the people around him too.

When you’ve got a 9 year old, who is the same size as a 15 year old, tearing your hair out because his porridge is the wrong consistency. Or biting you because he liked beans yesterday but doesn’t today, that is a misfortune. Whether you like the phrasing or not.

I can’t be left unattended with our son for any length of time, because he’s stronger than me. When I get him dressed, my partner stands guard close by incase he needs to rush in.

They’re not just his challenges. They’re all of ours. He has no siblings, on purpose, because it would be a challenge for them too.

So yes, we absolutely love him to the very end of the universe, but it’s not unreasonable when talking about children like him to recognise how very difficult it can be to be in their lives, and it’s not unreasonable that people who don’t live like us are not envious of our situation.

Yourethebeerthief · 06/08/2026 21:55

Coldhot · 06/08/2026 21:53

DS doesn’t have an intellectual disability and didn’t have speech delay, but he’ll probably never live independently.

There are more than two types of autism.

I do agree the present meaning of autism is too broad though. It’s not enough to say DS is autistic as nobody knows what that actually means now in terms of needs. How can they?

No, of course there aren’t. I agree. It is just immensely frustrating to see the other “half” of the autism experience brushed under the carpet. People do not like the reality of profound autism.

LastMinuteAgain · 06/08/2026 21:54

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.

Ironically if you read Kanner's original 1943 paper, the children described are somewhat similar:

https://bpb-us-e1.wpmucdn.com/blogs.uoregon.edu/dist/d/16656/files/2018/11/Kanner-Autistic-Disturbances-of-Affective-Contact-1943-vooiwn.pdf

"Kanner's Autism" used to be "classic" Autism.

https://bpb-us-e1.wpmucdn.com/blogs.uoregon.edu/dist/d/16656/files/2018/11/Kanner-Autistic-Disturbances-of-Affective-Contact-1943-vooiwn.pdf

Coldhot · 06/08/2026 21:53

Yourethebeerthief · 06/08/2026 21:46

I’m behind them all the way. They are often the ones with the fewest resources and the least energy to fight. There are two autistic communities as far as I can see. The diagnosis needs to be split.

DS doesn’t have an intellectual disability and didn’t have speech delay, but he’ll probably never live independently.

There are more than two types of autism.

I do agree the present meaning of autism is too broad though. It’s not enough to say DS is autistic as nobody knows what that actually means now in terms of needs. How can they?

user3199 · 06/08/2026 21:50

Agree OP. There is a young adult in my wider family with very severe autism. His parents managed to care for him at home until he was 18 but it was a huge struggle as he entered his teens. He is now in supported living with 24/7 2:1 care. He will never have an independent life, or any kind of normal existence - no freedom, friends, jobs, travel. There is sadly no positive - he doesn't have an amazing memory, he isn't a maths genius, or any of the other common stereotypes. While he is deeply loved he is not part of the family in a physical way - cannot visit his family home or any family events. He is missing from all the family photos. There is no gift, his life is one of suffering and it's a tragic situation.

SummerNocturnal · 06/08/2026 21:49

Nope.

I will read this thread (I promise) but they all inevitably become a slanging match between
Kanners carers versus Aspies
People with autism Vs Actually autistics
ad infinitum.

It reminds me of the Family Stone when the socially inept protagonist puts her foot in it that her future MIL would not have chosen a deaf child or a gay child.
Of course the MIL went batshit because love is unconditional. Whereas what the socially inept DIL meant was you'd never choose for your child to have a harder path. To face obstacles others won't have to.
Two things can be true at the same time:
You can love your child as they are unconditionally AND YET still wish they did not have autism.
It's also an awful lot easier to love your child with all their quirks that make them them compared with having someone reverse headbutting you and biting you or giving you a black eye. That's damned difficult for Mother sodding Teresa to cope with.

Yourethebeerthief · 06/08/2026 21:46

x2boys · 06/08/2026 21:43

Thankfulky there is more than one autistic community parents and care givers are fighting back and there is a growing on line community of parents and care givers of children and adults with ptofound autism

I’m behind them all the way. They are often the ones with the fewest resources and the least energy to fight. There are two autistic communities as far as I can see. The diagnosis needs to be split.

Yourethebeerthief · 06/08/2026 21:44

Sunnibee · 06/08/2026 21:39

I didn't say I have "access to a more virtuous love because my child is disabled", I said I know how to value, appreciate and love an autistic child in a way you clearly don't understand.
Since you have resorted to insults and clearly dont understand what it's like to raise an autistic child, I will leave it there.

Edited

No, I don’t. And I didn’t want to. Perhaps you should mull over your lack of experience with families on their knees with profoundly autistic children. They never have a voice in these conversations- they’re too bloody broken and exhausted to, and society is only interested in the quirky autistic savant, not little Josh who grew into a hulking violent adult who still has a dummy, destroys every piece of furniture in the home, and smears on the walls.

x2boys · 06/08/2026 21:43

Yourethebeerthief · 06/08/2026 21:37

🙄 Good grief

A consultation with the “autistic community”

God save us. We all know what that community looks like and it’s obviously not going to be spearheaded by all the autistic individuals who are incontinent and banging their heads off the bloody walls now is it?

Thankfulky there is more than one autistic community parents and care givers are fighting back and there is a growing on line community of parents and care givers of children and adults with ptofound autism

Sunnibee · 06/08/2026 21:39

Yourethebeerthief · 06/08/2026 21:34

I'm sorry you can't see or understand this kind of love.

You are so high and mighty and haven’t a clue what you are talking about. What a pathetic thing to say. You don’t have access to a more virtuous love because your child is disabled.

There are autistic people in my life who I love and value. I know families who are fortunate enough to have a child on the, quite frankly, better end of the spectrum. And if my child were autistic I’d love the bones of them just as I love them for who they are now.

Quite obviously, to any sane individual, I am still glad that they are not autistic. Just as I am glad they don’t have Down’s Syndrome, or were born missing limbs, or blind.

”Mother relieved her child isn’t disabled” is not the headline of the century.

I didn't say I have "access to a more virtuous love because my child is disabled", I said I know how to value, appreciate and love an autistic child in a way you clearly don't understand.
Since you have resorted to insults and clearly dont understand what it's like to raise an autistic child, I will leave it there.