How common is autism among close family and friends?

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

Why is it a diagnosis if everyone apparently has it?

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.

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.

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

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.

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.

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

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….

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.

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

This is a really good visual representation. The classic “spiky profile” issue means that people may have much greater difficulties in one area than another. It’s amazing how many people still think the “spectrum” is a line grading people from “not autistic” to “autistic”, 🤔🙄😆 rather than a way of establishing the specific profile of needs for a particular person who is autistic.

Yes, you’re absolutely right. It’s astonishing that so many people who apparently feel they are well-informed enough to make comments about autism don’t grasp this basic fact which would be the first slide on any decent training course/ information booklet for people starting from zero knowledge, and obviously therefore makes any “categorisation” or people into “levels” of support need completely unworkable and arbitrary, hence that having been abandoned by all competent neurodevelopmental doctors and removed from the diagnostic criteria (everywhere except in the US, which is miles behind on this - strange given that they are usually at the forefront of medical research, but I presume this widespread denial of neurological medical research in the US is largely due to their current populist politics aimed at the braindead, resulting in them having senior members of the US Government spouting comically ignorant assertions about autism which are even more laughably stupid than the idiotic things the likes of Farage and Badenoch have disgraced themselves by saying in the UK in their pathetic attempts to scapegoat autistic people for the country’s economic woes).

Indeed. They almost always prioritise the available support based on how disruptive a child is, which is not the same thing at all as their level of need for support, and in many cases behavioural issues have nothing to do with disability so a large proportion of SEND funding is being used for children who have no medical conditions. It’s quite scandalous. It’s usually all about what will make life easier for the teachers, rather than what children actually need so well-behaved children with disabilities are effectively punished for their good behaviour by being denied the necessary support for an adequate education.

It’s also appalling that referrals are being based on the judgements of unqualified SENCOs who know next to nothing about most medical conditions so are not in a position to make such judgements, yet are being made the gatekeepers to medical specialists.

There is also a great deal of collusion between incompetent SENCOs and failing Local Authorities/ their corrupt and useless Ed Psychs and failing NHS services such as NHS SALT services etc. The whole things is beyond a joke and there are no consequences for deliberate and systemic law breaking even when it is evidenced at tribunals. What is needed is a proper regulator that will impose personal and organisational fines for unlawful behaviour, suspend staff involved/ remove their professional qualifications, etc (like in any other regulated profession, let alone one that involves a duty of care to vulnerable minors). Nothing will change until there is proper enforcement: education has become like the wild west where many of these public servants seem to believe that ignoring the law is normal and acceptable, so this rotten culture has now become widespread.

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.

While general population estimates suggest dyslexia affects roughly 10% of people and autism affects about 1%, studies estimate that up to 50% of autistic individuals also meet the diagnostic criteria for dyslexia

Those are figures that come up with quick google.

There a list of common morbidties and actual medical conditions that are more prevelant in that 1% or even with ADHD ( level highest 3-4% in UK) which we see in my family.

I have to say SENCO and even teachers have been gas lighting us even about dsylexia for years - me I could understand in 80 and 90s more despite showing classic symptoms but I've had same with my DC. As soon as we finally get near actuals tests not screening ones - them it's very clear.

Yes, many, many other conditions are more common in autistic people. There is a much higher prevalence of immune system disorders and ME; problems with the disgestive system; higher risk of POTS and other heart conditions; nerve system disorders; over 85% of autistic people have sleep disorders due to different melatonin production; higher prevalence of migraines; much higher risk of hypermobility; greater impact from hormonal changes during puberty, pregnancy and peri-menopause; different reactions to medication that are not properly researched; as well as obviously being at much higher risk of anxiety and depression but that is primarily environmental due to being forced to function in inappropriate environments that cause distress and the damaging effect of masking which compounds this mental health damage.

It’s nowhere near 50%.

Yes, unfortunately most SENCOs are very ignorant. They are not required to have any additional training above the PGCE that most teachers do, which includes half a day in total on all SEND. Many SENCOs do not understand their legal responsibilities and of course have zero clinical expertise let alone specialisms in particular medical conditions. Any training they do receive is usually done on the cheap by unqualified Local Authority staff who are equally as clueless and often providing information that is factually incorrect and 20 years out of date (I have seen some of the abysmal training materials, it would be laughable if it wasn’t for the impact on the children). Even the “specialist teams” within Local Authorities which provide advice to schools are not clinicians and often have no idea what they are talking about, operating on outdated stereotypes. Some of the conversations I have had with them have been quite astonishing in terms of revealing their level of ignorance and yet them purporting to be in a position to advise schools on what to put in place. And of course SENCOs like other teachers only see the children in one limited environment where many are masking.

Giving them the benefit of the doubt perhaps they work in areas where its much more prevelant for one reason or another. Schools in particular can get a reputation for being good at SEN and parents pick it and can have wildy different rates of sen to other schools in the areas. I dont know about doctors other than there are lots of comorbitities with autism so you are more likely to be seeing a gp about something else so it could feel like more of your patients have autism because your other patients are just sat in your books and never come in?

But none of the available statistics available nationally back those figuure up. In schools total sen is about 20% and that covers everything from deaf, blind, cp, down syndrome, dwarfism etc. Autism and adhd together make up a big chunk of that 20% but not all of it. Adding nhs referrals together with those who have a current diagnosis still end up around 3% prevelance in medical records, so to get to 20% to 40% would mean these were out by a huge margin.

Im always fascinated by peoples lived experience where they are saying figures like 20, 40 or even 50% and the mismatch with the available actual statistics and parliament reports on the topic. It feels like something has gone amiss.

That's only because the categories were combined (which is as it should be). They would still have met the criteria for e.g. Aspergers then.

That's a separate issue from how many people were missed in the past (especially females). I didn't get diagnosed till I was 34 (though I realised I was autistic when I was 19). But my daughter was diagnosed at 11.

I find it quite baffling that no one remarks upon the fact that if these traits are SO common, how can they be a "divergence" from the norm?

What do we call it if its 50% of people?

Among under 18s? Absolutely loads, about 1 in 5 or 6 at my DC school. But these are all autistic per recent criteria, and wouldnt have met criteria before DSM V and possibly DSM IV as well. Far fewer meet the traditional critera - maybe 2-4 in a school of over 200.

Yes, if you are neurodivergent in one way, you're likely to be neurodivergent in other ways too (or have relatives who are).

I'm autistic and dyspraxic (the latter not diagnosed, but I meet the criteria). One of my sisters is both (both undiagnosed). My daughter is both (both diagnosed), and maybe dyscalculic too.