How common is autism among close family and friends?

[momtoboys]

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!

Nobody who works in the field and no credible research has suggested anywhere close to that percentage. Your “GP friend” is spouting ignorant nonsense.

One of my sisters has undiagnosed Asperger’s high functioning Autism. She never got any help with it as my parents especially my mother were/are in total denial. She also is a hoarder, has ocd and probably bipolar disorder. And before anyone says how do you know, I’ve known her all my life plus I have a medical background. My first cousins son and one of my nephews are also on the spectrum.

GPs and a lot of the NHS often are.

I moved my daughter to a new school at the start of year 3. There were 11 boys in her class and 9 of them were diagnosed asd. My daughter was diagnosed formally in year 5 - another girl was diagnosed in year 6 and another at uni (I was convinced they were both on the spectrum right from the off but didn't feel able to say anything and for school not to have noticed...).

Anyway that was at a bog standard community primary school. One third.

I think there are certain places in the country where you get very similar types of people living that aren't representative of the country as a whole.

Anywhere which has particularly high house prices so the only people who can afford to have children in the area are computer geeks or highly paid jobs such as doctors and pharmacists is potentially more likely to have this because it effectively naturally selects who can live there and autism is genetically related.

My eldest was diagnosed with ADHD and ASD in his late teens. It was a long wait and no surprise. Two of DP’s siblings are diagnosed with ADHD, one also with ASD. There is no way on God’s green earth that DP doesn’t have ADHD and quite possibly ASD. Also his dad. Our youngest is in therapy for severe OCD and autism has been suggested as a complication in his lack of progress. I think I most likely have ADHD and ASD myself. When I spoke about this to DS1, he said ‘Well, you certainly have two very strange children’🤣🤣 I also have two autistic cousins and a very late diagnosed autistic aunt who is now in her nineties (diagnosed in her late sixties.) Add to that ALL my son’s friends (birds of a feather …) and many of their diagnosed (and undiagnosed) parents with whom I have become acquainted, I know and interact with loads of people who are neurodivergent.

My husband has autism, as does his dad, mum and our oldest son.
My youngest has ADHD.
My dad and brother both have serious and severe dyslexia and my dad also has dyscalculia.

I am neuro-typical.

Interesting that several people are mentioning dyslexia. Is there a link between dyslexia and autism, i.e. if you have one, you're more likely to have the other?

My FIL is dyslexic and his late brother was autistic (as is one of his sons).

The senco at the school I work in, also said the same thing. She's probably ignorant too. 😉

Nephews on both sides of of our family and at least one cousin

I get that to some extent. Am thinking of the parents. One was an investment banker who would def fit your criteria - the others had more normal jobs. This was 20 years ago when reported autism rates were much lower.

Everyone in my family has significant traits. I am diagnosed, as is my daughter, and one of my nephews. But both my sisters are autistic and undiagnosed, and probably all their other children, and my mum (though she'd never admit it), and probably some of her relatives too.

My dad also has significant traits, but I don't really know his side of the family.

And my daughter is home educated, so all of her friends are autistic or otherwise neurodivergent, as a lot of home ed children are (either because the family isn't mainstream enough to put them in school in the first place, or because they did go to school initially, but their needs weren't met).

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.

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.

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?

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.

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.

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.

It’s nowhere near 50%.

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.

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.

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.

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.

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).

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.