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!

Pretty much everyone I know would know a number of people with a diagnosis.
Over 30 friends with it were often diagnosed more recently. In the 90s, the only people I knew who were diagnosed tended to be non-verbal/some used nappies, and the term Aspergers tended to be used in the noughties for people who had autism but without what some called "profound" traits.
Professor Ute Frith argues that the term now is used very differently, so depending in the age group you ask, you are likely to get a range of answers.

I don't think you'll get a very representative sample on this thread because it will attract people who do have autistic friends/family.

@Ponderingwindow may I ask what hobbies these are? It would be so nice for dd to find her tribe.

Ute Frith been discredited as she seems to think it’s ok to deny women and girls an autism diagnosis.

https://www.autism.org.uk/blog/challenging-misinformation-about-autism-using-evidence-to-correct-false-claims

London. Waiting list is about 2 years, bit less maybe. I refer probably 5-8 children a year, some start school with a diagnosis or on the pathway.

When they meet the diagnostic criteria as listed in the ICD 11 (or 10? Can't remember which is the most recent) and/or the DSM-V

How do you know what's happening when you're not with them?

The 1% is a very dated statistic. There hasn't been a count of diagnosed autistic people for years.

@JLou08 ah thanks, so out of date rather than actually wrong. That makes sense.

My DD is diagnosed. I have since realised her Dad is but undiagnosed. Doing research I have noticed a lot of traits in myself. Then I started noticing a lot of traits in friends and colleagues. I am starting to wonder who is actually neurotypical at this point.

Crocheting attracts many autistic women.

My son and half brother are diagnosed. Me, my sister and my dad suspect we are, but due to age and gender haven’t been.

Very common among people I know, particularly on the high functioning/formerly known as Asperger's end of the spectrum. Several friends/acquaintances have autistic DC, I suspect my stepdad is autistic, plus other members of his family, friend's DH (they have two autistic DC), a couple of DH's friends who are very bright people, but almost certainly autistic. It wouldn't surprise me at all if MIL is autistic, but she's in her 80s and no one that age got diagnosed unless they were very severe and she isn't, but has a lot of traits.

I think we need an additional question:

What proportion of of posters on MN consider themselves or a member of their immediate family to be ND?

Same. I actually don't know anyone.

I think the problem with that is ND people are probably more likely to be online rather than out at work/socialising so straight away any results would be skewed.

Looking at this it does seem prevalence (or at least diagnosis) rates are higher in younger age bands, so the 1% statistic is misleading as it does not take into account the fact that autism was underdiagnosed for much of the last 100 years.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10114511/

It seems to be more like 3% in children, so about one per class would be right according to that. I don't know whether the "3 in each class" or "10% of the school" are in schools with particularly high rates, or whether posters are counting children on the pathway (suspected) as well as officially diagnosed.

It is quite likely prevalence is higher than diagnosis figures suggest, because it seems to take so long to get a diagnosis.

I watched both of the Uta Frith interviews and read her article and she doesn't seem aware of the more recent research, which I find a bit puzzling. She states that a large proportion of people being diagnosed as autistic now do not fit the group that she was studying years ago, which is probably true. But I am not sure she is right that there is nothing in common between the groups.

I do find it believable that in the process of studying some phenomenon or group of people, it is possible to both miss part of the group, and/or to accidentally conflate more than one thing into the same group which later gets split apart. But there has been lots of research trying to split autistic people into different groups and none of them really seem to stick. If it was as simple as age of diagnosis that would have been established and I think it has also already been used as one of the criteria (the "four types" study seems like it is supposed to be more replicable than others?)

I don't think autism prevalence could be anywhere near 50%, that doesn't make sense - autistic people struggle with neurotypical social communication norms and often feel isolated among their peers, that would be unlikely to happen if it was 50% of the population. Even with something like sex, where men are seen as the "norm" and the default so norms are based on male bodies, it doesn't mean women feel isolated in relation to men, because we tend to talk to each other.

In all my known blood relations, only my youngest son has and my great-nephew have a diagnosid. They are both at special school - which means lots of friends have a diagnosis too..

I can see lots of family members that have difficulties in some areas - so they have traits - but not to the point that it significantly impairs day to day function across a wide range of social communication and restructure repetitive behaviours, so its more like quirks than a widely impacting disorder.

In fruends not through school, there are more diagnosis in chikdren under 10 than over 10

As far as I know there is just on person in our families and they aren't a blood relation. Which makes sense if it's hereditary

Autistic traits are human traits, so some of them will appear in most people regardless of neurotype and as autism is becoming more talked about, people will make those connections.

It's when certain traits appear together and significantly impact daily life (and prove those to a professional alongside them considering and discounting other possibilities) that you get the 'meets the diagnostic criteria'. Whether that's a good line - or if we need to break it back up into more lines - is a debate that's been going on for many years.

I recently went through the final assessment with DD2. There was some discussions about what she's particular about. Plenty of people are particular about their foods or clothes or their hair or space without being autistic. Being particular about all of those and more and the given reason for that being linked to a strong sensory issue and/or a strong sense of veracity about it alongside also have particular social and communication traits that cause issues in daily life is more likely to get a 'yes, she meets the diagnostic criteria'. There is also questions around trauma and similar things to consider other potential causes.

I found it interesting to read DD2's report and compare it to older siblings. DD1 and DD2 are personality polar opposites. DD1's sing-song voice was brought up by her clinical assessor, DD2's brought up her monotone voice. There were so many things the assessors picked up that I was oblivious to as anything other than normal, but spotting those 'very different but the same' was interesting to me.

In person I rarely mention anything to do with ND or my other disabilities, I've only mentioned it regarding my kids once at a workplace and only because a colleague brought up her autistic daughter up first who just happens to work in the same profession as my DD1 (and it is not a profession generally associated with autistic people) and we were in private. I never discuss it about myself, I am still the mask myself into burnout sort, I'm glad my kids feel they can be more open about it even if it makes me worry.

Both my sons, two of my brothers, and one of my sisters have been diagnosed. My two best friends have 5 kids between them and 3 of them have been diagnosed. (I have ADHD and one of my friends is waiting for an assessment). We met through a pan disability football club that our kids go to. ND people tend to gravitate towards each other. I know more ND people than I know NT people.

I think I read a statistic BTW that autism is about as prevalent as red hair. This doesn't work as an analogy in the UK, because our number of redheads is much too high, especially if you're in Scotland, but it works quite well in the US apparently.

It is a shame IMO that it doesn't work though because I think it's a very good comparison - red hair is very visible and tends to run in families - so you'll generally either have multiple redheads in your family, or you won't have any (or only by marriage).

But anyway, to borrow something which has a closer prevalence rate, even though not as much heredity, you can use twins - about 1.5% of births in the UK are twins (or higher order multiples).

Most births are not twins. Unless twins run in your family, your personal chance of having twins is pretty low. But twins are common enough that you likely know at least one family with twins, in fact over the course of your life you can probably think of several sets of twins that you have known. You may be a twin yourself or have some in your family.

This makes it a helpful illustration to understand what 1-2% actually looks like. We hear 1-2% and we think that is a tiny proportion and cannot possibly account for the amount of families we can think of who have an autistic child. But 1-2 out of every 100 is actually quite a lot out of a whole population, and out of the vast numbers of people we meet in our lifetimes. It's the same with autism and I think this is part of why people are confused about why "everyone" seems to be autistic. It's not because a large percentage of people are autistic, it's because most people don't understand what 1-2% actually means on a population level. Well - twins. It means the amount of people who are twins.

Three family members. Hold in mind that due to the genetic link its rare for there to be only one family member with autism and there will be more undiagnosed I’d guess.

A couple of friends not diagnosed but one considering an assessment.

Not one in my family, on either side. Plenty of dyslexia though.

I know loads of kids with autism, in our neighbourhood, at the kids school, etc. None in my family, though my sister suspects she could be, I’m not convinced but I’m not her so can’t really say. I’d say it’s unusual not to know anyone but I’d have thought the prevalence was higher than quoted.