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How common is autism among close family and friends?

242 replies

momtoboys · 16/07/2026 16:41

Posting here for traffic. It has long seemed to me that very frequently a post on mumsnet includes mentions of SEN, autism, etc. Posters mention children having these traits, the poster has these traits, a friend or a partner. It appears that it is way more prevalent that I could have imagined.

How many of us have a person who is close to them (either family of friend) that has been diagnosed with autism? Thanks!

OP posts:
Gemstones9 · 19/07/2026 14:23

Me, one of my friends, a friend's daughter, and possibly a couple of people in my family but they aren't diagnosed.

BetweenTheThoughts · 19/07/2026 14:47

It probably feels more common because people are much more open about talking about autism now than they used to be. Forums like this also naturally attract parents and families looking for advice or support, so it can seem overrepresented compared with everyday life.

DrRylandGrace · 19/07/2026 14:54

Arran2024 · 19/07/2026 13:00

Sencos are there to implement sen policies - there is a lot of paperwork involved. They tendvto be told what to do, which children to see, by the head. They aren't independent, able to identify struggling children and take action.

Usually the children who receive help are the acting out ones. Anyone sitting quietly is likely to be overlooked and if your child hasn't been seen by the end of year 4, forget it - there are only two years to go till secondary, meanwhile every year brings a new cohort of acting out children.

I had a good relationship with the senco at my younger daughter's school. I needed an ehc for secondary so I asked school in year 4 if she could be assessed by the ed psych. Senco came back to me with a date - i genuinely thought she was being seen. Long story but it turns out that the Ed psych observed her for 5 minutes through the window! And as she wasn't an acting out child, of course she didn't see anything untoward. I had to commission a private ed psych instead.

Even the end of year 4 I’d say would be far too late. It has taken 5 years and 4 legal cases to get an EHCP in place for one of my children, despite them being diagnosed with autism in Reception, due to the Local Authority obstructing it at every possible stage of the process.

Each time I have to take them to tribunal, resulting in a delay of 12-18 months. Then, when they are found to be in the wrong all that happens is that they are ordered to do what they should have done in the first place. There are no consequences, nobody is fired, there are no fines, no professional qualifications are removed, and so they go on to do this to the next family and the next and the next because the financial incentive is for them to delay provision as long as possible: every week they delay doing what they are required by law saves them money. They do not even have to pay my legal costs back when they lose each hearing (e.g. Paying thousands of pounds each time to have expert witnesses attend unnecessary tribunal hearings when it’s already crystal clear that they have no case. And the LA being so disrespectful that they don’t even bother to turn up to the hearing to defend their indefensible position, because they know already that they have no case and it would be embarrassing for them).

I actually had to call the school as a witness to these tribunals: the LA didn’t want to call them because the school disagrees with their position, so the LA didn’t want them there to give their evidence and wanted to have a hearing without hearing their evidence, or that of any of the medical specialists who unanimously disagree with them that this child didn’t require an EHCP.

They have ruined almost all of the child’s time at primary school with this behaviour, with them rarely able to attend and learning little when they are there as well as having their mental health completely destroyed. This is a very bright child who is kind and sociable and desperately wants to learn but has committed the arch crime of not being violent or disruptive, so therefore apparently doesn’t deserve any support to access education.

I have had to pay tens of thousands of pounds for private operations, therapy to try to repair the damage the school has done, physiotherapy, private SALT therapy because the NHS SALT service falsely claimed it was only commissioned by the ICB to treat non-verbal children (which the ICB subsequently confirmed to be false) so what calls itself the NHS SALT service discharged the child after having met them for 5 minutes because they could speak in sentences.

And that is just one of my two children for whom these incompetent and shameless law breakers have ruined primary school and their mental health, when prior to school they were happy and well-adjusted children despite being autistic. Between the two of them I’ve had to go through 7 tribunal cases now with more to come and still neither has been placed in an appropriate school that they can actually attend regularly, 5 years later.

And much more not listed here as well: the legal costs, and the stress, and trying as a lone parent who is autistic myself to manage all of the legal paperwork and additional parenting they require plus a full time job and having them off school for up to 4 months at a time because the school has made them suicidal, as primary school children, when I am a lone parent and also need to provide for them financially. Absolutely heartbreaking to see the damage done and one can only hope that Dante’s 8th circle of hell awaits these disgusting people at Local Authorities who are complicit in deliberately harming autistic children and causing lifelong damage to them to save themselves money, spending money that could be used for appropriate educational provision instead on armies of vultures to fight legal cases against the exhausted families of disabled children and feed off their carcasses. What kind of career choice is that? As a result of all of this they have now caused such extreme damage to my own health that I am unlikely to be able to continue full time work because I have multiple organs failing. Slow hand clap - that’ll be tens of thousands of pounds per year in tax lost, far less than it would have cost to put them in an appropriate school that they can actually attend.

If one were to start the process in YR4, of even getting a diagnosis, the child would likely long have finished school before they have a diagnosis and the parent has completed the 4-5 year battle to force the LA to put an appropriate EHCP in place.

I don’t know how these people sleep at night: they know the damage that they are doing to disabled children and their families and continue regardless. 99% of tribunal cases across the country are won by parents, a statistic that’s been static for many years now, so these aren’t “mistakes” (I mean, if they were, then surely the staff would fired anyway for gross incompetence if they are getting 99% of their job wrong!?). No: it is systemic, deliberate law breaking that is well-evidenced. The solution to that is extremely strong enforcement, coming down on it like a ton of bricks with very significant consequences just like would be the case if regulated professionals in law, finance or medicine broke the law.

Yet the Government is doubling down on the failed “one size fits all model” and trying to force MORE autistic children into mainstream state schools which will never be appropriate for a significant proportion of them. It’s state-mandated child abuse, effectively, which they are desperately trying to “sell” as though it’s for the benefit of the children. Kafkaesque.

They know exactly what they are doing. One couldn’t design a more torturous environment for most autistic children than a mainstream state school if one tried.

It’s not education law that needs changing, it’s enforcement of the law. Everything would change overnight if there were robust enforcement and appropriate consequences for unlawful behaviour, as there is in every other regulated sector. It requires a regulator with a mandate requiring it to take firm, zero-tolerance action itself on the systemic illegal behaviour, not gaslight parents by treating each case as an isolated and unfortunate event and expecting the parent to enforce the law.

Sadly our disingenuous and appalling excuse for an Education Secretary ignores anybody who points this out to her, and is hell bent on making a broken system even worse - not just for autistic children, but for all children in state mainstream schools by pursuing a policy which has already been shown to be an utter failure. It’s quite something for somebody to manage to devise a way on making the situation even worse than it is currently. Her pathetic response to the Local Authority whistleblower on ITV news recently was quite hilarious: she denied that she had any knowledge of Local Authorities breaking the law, despite the fact that they are found to have done so in 99% of tribunals, a fact of which one would assume she is aware after two years in role?! She said she would “take action to hold law breaking Local Authorities to account”. I wonder why she hasn’t done so for two years? I wait with bated breath for her to tell us what this “action” will consist of….

WeatherOrNothing · 19/07/2026 15:00

NotBreezy · 16/07/2026 16:57

I am in my fifties. None of my family or my husband’s family or the generation below us have diagnoses. And the sprinkling of new grandchildren don’t have diagnoses either. My friends and their kids do not have autism diagnoses. Maybe I am an anomaly.

Same here. Know not a single person or child. I only ever read about it online but personally don’t know anyone

SeriousTissues · 19/07/2026 15:10

My daughter was diagnosed but we disputed it. She has one trait which only affects her at school and is a trait she shares with me. However I have long suspected that her dad is, along with his two siblings and one of their children.

shoesandshipsandsealingwax · 19/07/2026 15:12

BetweenTheThoughts · 19/07/2026 14:47

It probably feels more common because people are much more open about talking about autism now than they used to be. Forums like this also naturally attract parents and families looking for advice or support, so it can seem overrepresented compared with everyday life.

I agree, also forums naturally attract people who are neurodiverse as many feel more comfortable communicating via screens/words than they do in person. I know I'm much more comfortable expressing myself on here than I ever would be in real life.

DrRylandGrace · 19/07/2026 15:28

ITV news report with the whistleblower, who spoke out about how Local Authorities are told to ignore the Children and Families Act 2014, the statutory SEND code of practice, the SEND regulations 2014, the Equality Act 2010, the Education Act 1989 and indeed international law setting out the requirement for even developing countries to provide education for all children. Yet, apparently, this is too much to expect in the UK.

She describes how the Local Authority staff (in the department in which she works) are told not to leave any paper trail, not to answer their phones, refuse to speak to parents, ignore emails. She describes how the staff - in these departments whose salaries we are paying through our tax to ensure that appropriate educational provision for all children is put in place - laugh together in meetings about how they have denied disabled children access to education and make jokes about the distress they have caused to the children and their families, when the children with disabilities are so distressed that they become unable to attend school and their parents are distraught. They sit there mocking the children and families and laughing about it:

https://www.itv.com/news/2026-07-03/council-staff-told-to-delay-access-to-send-support-whistleblower-claims

MrsPapillon · 19/07/2026 15:36

The question that is being asked is “How common is autism among close family and friends?”

If you have an autistic close relative you are much more likely to have another autistic close relative than the general population (or indeed be autistic yourself). Hence posters like me who have maybe a 50% prevalence in our family. That doesn’t mean 50% of the general population are autistic. It means that there is an obvious genetic component to autism and people who are affected by autism are more likely to contribute to threads about autism.

DrRylandGrace · 19/07/2026 15:46

MrsPapillon · 19/07/2026 15:36

The question that is being asked is “How common is autism among close family and friends?”

If you have an autistic close relative you are much more likely to have another autistic close relative than the general population (or indeed be autistic yourself). Hence posters like me who have maybe a 50% prevalence in our family. That doesn’t mean 50% of the general population are autistic. It means that there is an obvious genetic component to autism and people who are affected by autism are more likely to contribute to threads about autism.

Yes, an odd question to ask in the first place because obviously with it being genetic the answer with be almost completely dependent on whether your family has these genes (and in terms of friends, obviously similar people gravitate together in similar professions and social circles, so while most people will have a variety of friends who are autistic or not, autistic people will also tend to have more autistic friends and acquaintances!).

Quite an odd question for a thread because I’m not sure what the OP was hoping it will reveal given that obviously the majority of people, for the reasons above, will likely know lots of autistic people or very few at all. And the aforementioned fact that in most cases (unless they had a specific profile of needs meaning they were incapable of masking, which is generally only the case when there are other conditions as well as autism present, diagnosed or not) you would only know if someone is autistic if you know them very well unless they decided to tell you, so nobody could even answer the question the OP posed accurately, only instead what proportion of the people they know are they aware of being autistic. In many cases people will not have told them and they’ll have no idea. And in some cases the autistic people themselves won’t have yet realised/ accepted that they are autistic.

I’m not really sure what the point of the OP was, @momtoboys ? Mumsnet obviously wouldn’t provide any kind of statistical evidence, so I would genuinely be interested in why you asked the question to start with.

I hope it was well-intentioned.

MerryUmberHedgehog · 19/07/2026 15:48

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TigerRag · 19/07/2026 15:54

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Why is it a diagnosis if everyone apparently has it?

shoesandshipsandsealingwax · 19/07/2026 15:57

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When you say things like this it makes you look very silly. HTH.

MrsPapillon · 19/07/2026 15:59

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No we’re not.

The ‘spectrum’ was a spectrum of Autism from Kanner Syndrome to Asperger’s Syndrome and all autism sufferers would be placed along that spectrum according to their behaviours and needs. Only people with autism were ‘on the spectrum’. It was never a spectrum of ‘Autistic’ to ‘Not Autistic’.

DrRylandGrace · 19/07/2026 16:06

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Ridiculous comment. You clearly do not understand what the spectrum is. It’s not a measurement of whether someone is autistic or “how autistic” they are, it’s about the specific profile of needs of someone who is autistic.

It’s usually good for posters to read the thread before commenting to avoid posting ignorant rubbish, so that they don’t make themselves look very stupid.

One wonders if you think other neurological conditions should be “ignored” and are an “excuse” (I’m not sure why you think an “excuse” is required, either. 🤔Should people with disabilities need to “excuse” their very existence, or is there some way you consider them to have wronged you personally, which you believe they should have to provide “excuses” for? Please do explain).

One wonders whether people who write ignorant things online about autism post similar unscientific bile about people suffering from other neurological conditions like epilepsy? Dementia? Parkinson’s? Cerebral Palsy? Brain tumours? Huntington’s? MS? Or, do people writing spiteful and ignorant nonsense on the internet about autism just have a specific and irrational hatred for people with this one specific neurological condition, about which they know nothing at all?

Maybe some of the people with an irrational hatred of autistic people have been binging on GB “news” or similar media designed for those who need never concern themselves about neurological conditions because their brain is already dead.

It’s usually best for people not to comment on topics about which they know absolutely nothing unless, of course, they enjoy making a fool of themselves publicly and advertising their stupidity.

MerryUmberHedgehog · 19/07/2026 16:31

Not really. Ive probably got more experience than you.

Gengha · 19/07/2026 16:33

My 17 year old son is autistic. My husband I think may be on the spectrum but no diagnosis. My son was diagnosed about 8 years ago but I had suspected it since he was about 3. I’m pretty sure I have 2 nephews on husbands side who are as well, but I’ve never mentioned my thoughts to their parents.

SupernaturalAddict · 19/07/2026 16:46

Ds has severe autism. Diagnosed as severe on his report before the changes to what was included in the diagnosis. Diagnosed at two after a delay with the nhs so should have been diagnosed at one.

I know many people with autism via ds; school, families of kids with disabilities etc. The majority of children I know who have autism likely wouldn't have been diagnoses before the change in the diagnosis or would be classed as Aspergers/ high functioning.

No others in the family are diagnosed including our other child who is definitely does not have autism.

I have close friends from before I had ds none of those have autism or have children with autism.

Widoeeyes · 19/07/2026 17:13

My sister has 5 kids with autism. I suspect my sister has it too.

my sister in law, and both her kids have it.

DH, DS and I all have some various traits: social awkwardness; sensory issues, dreadful coordination. None of us diagnosed. I took years to speak, so did DS. I took years to learn how to tie school tie; shoe laces. And cannot drive. Both DH and I have decent; fairly well paying jobs. DS is doing fine at school, but has always had frequent meltdowns outside of school. The biggest issue being around clothes and shoes

Widoeeyes · 19/07/2026 17:20

What I would say is that there does seem to be a general feeling that it’s over diagnosed, and perhaps some parents pushing for a diagnosis for disability benefits.

regardless: I think there does need to be some changes to the schooling system: it doesn’t work for so many children: especially the bullying that some kids need to endure, that as adults in the workplace would be completely unacceptable

DrRylandGrace · 19/07/2026 17:32

MerryUmberHedgehog · 19/07/2026 16:31

Not really. Ive probably got more experience than you.

Funny

DrRylandGrace · 19/07/2026 17:33

Widoeeyes · 19/07/2026 17:20

What I would say is that there does seem to be a general feeling that it’s over diagnosed, and perhaps some parents pushing for a diagnosis for disability benefits.

regardless: I think there does need to be some changes to the schooling system: it doesn’t work for so many children: especially the bullying that some kids need to endure, that as adults in the workplace would be completely unacceptable

Diagnosis leads to neither disability benefits nor SEND support at school.

Alittlefrustrated · 19/07/2026 17:52

My DP and DS are, I can confidently say, undiagnosed ASD. I was involved in ASD assessments for 14 years, hence my confidence.
DP has an adult nephew who is to be assessed, and a great nephew who is diagnosed ND, including dyspraxia.
My DSis believes she is ASD - I think she's right,and that this contributed to her severe eating disorder and anxiety.

Widoeeyes · 19/07/2026 17:55

DrRylandGrace · 19/07/2026 17:33

Diagnosis leads to neither disability benefits nor SEND support at school.

That may be the case: but the perception among many is that a diagnosis is the gateway to riches

twoshedsjackson · 19/07/2026 17:56

When I was teacher training, many years ago, autism was a relatively unknown term and I believe that many more pupils "flew under the radar", especially if, as PP's have said, they were quiet and withdrawn rather than acting out. I caught up somewhat during my career as we were given more insight and hopefully training.
In retrospect, I can think of some characters who have passed through my classes, thinking, in retrospect, "That would explain a lot...."
I remember one of Victoria Wood's dramas, in which a character portrayed by the redoubtable Thora Heard came out with the immortal line, "We didn't have special needs in my day, you sat at the back and did raffia work!"
It is also true that some "powers that be" will do their best to stall on diagnosis, because of the expense implicit. In my opinion, they waste money paying lawyers that would be better spent on appropriate funding, staffing and training.
More than one teaching acquaintance of mine has related being firmly steered away from voicing concerns; as awareness grew, teachers were quicker to spot early signs and flag them up, so that the right help could be given early, only to be shut down, almost as a trouble maker.

TheFairCat · 19/07/2026 18:08

Ponderingwindow · 16/07/2026 17:34

It runs in families, we tend to get jobs with other autistic people, and we most easily form friendships with autistic people. If a person is autistic, they are likely surrounded by autism and that is a good thing.

I have a few hobbies that tend to attract the ASD crowd. It’s amazing how different the communication style is when we are the majority. It’s wonderful. Everyone is so relaxed and we just jump into deep conversations like it is nothing. There is no small talk. People walk up to one another and give compliments or ask questions. It’s just the most open and sharing experience, regardless of why we are gathered.

I’m really sorry to sidetrack from the original question, but I was really interested in your response and wondered if I could ask about it?

My daughter is autistic, but seems to present quite differently to ND peers. Both of her best friends are also autistic, but I have noticed neither of them tend to ask many questions and are more likely to give information rather than ask for it (neither do they seem very interested in information about other people when it’s offered if I’m honest!)

My daughter is completely different. She loves asking questions and will give people she barely knows the Spanish Inquisition given half a chance. She’s very sweet and I think people are a bit taken aback, so they tell her all sorts!

She will remember things that people have told her, like if they’ve mentioned their Mum’s poorly or they’re due to have a blood test etc and will ask them about it. She’s really interested in my husband and I’s jobs and asks loads of questions about them.

When we go to zoos, galleries, museums etc she has endless questions and we often have to drag her off when the staff members are beginning to look like their heads might explode!

She does have things she is particularly interested in (animals and nature) but she’s also just really, really inquisitive about people and goes straight in with the questions, even if it’s just someone we’ve got chatting to in the line a theme park.

Obviously we don’t want to make her overly self conscious, or dim her spark as she’s such a lovely person, but it does make me self conscious and I am often telling her it’s none of her business or ‘that’s enough questions’ etc.

I love the idea that when she’s older there might be social opportunities with people more like her, but the autistic people we know seem to communicate quite differently. For example I doubt her best friend even knows what I do for a living, whereas my daughter knows a frightening amount about her friend’s parents!

Does what I’m describing sound familiar to you as another autistic person? Or is she just a bit of an anomaly?

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