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!

Well first primary school my DC went to was the one designeate the area center for autistic kids within main stream school - so knew quite a few.

My family it's not autism - it's ADHD - it's rife across counrties - family has emigrated last few centuries - and generations just there we all manage to live productive lives. Also have dsylexia and dyspraxia and sensory and processing issues in mix. We tend to marry into similar families - to point assesors have had to tell us things we think of as normal aren't in wider population.

Adults with ADHD around 4% gloably google telling me so more than autsim at 1% - dsylexia it put at 10-20% - dyspraxia 5-10%.

Area we lived for a few years there was an usually large number of rare genetic diseases - it was a white population but I once made mistake of explained why there was a lack of gentic diversity and got called racists and ignorant followed round boards - it was widly known in area and GPs and studied by researchers but MN knew better. Sometime there a reason there for concentration of rarer conditions.

One reason I am here is kids needed more support in school especially in early years and primary boards were extremely useful when RL was very frustrating and full of critsim of our parenting - or TBH mainly me in Mum role.

Children mask at school. Teachers have been shown for decades to be largely oblivious.

Of DS1's original reception class of 30 (now Y5) three kids have left due to autism (two to special schools and one HE). There are a number of kids still in the class who are ND.
My other son's class has so far had two DC leave for special school and at least two more who are diagnosed with autism.

I find it interesting that there are physical traits associated with autism and ADHD. Hyper mobile joints for example and I think gut issues and the latest I read was lower melatonin production.

Yep, sleep issues are a major "thing" with ND, as are food intolerances and allergies. It's really interesting how much of my "health issues" are actually probably because I'm autistic.

Looking back, I can think of a few girls who might have masked and I agree that we were better trained by the end of my career. However that doesn’t change the fact that the learning environment was almost always calm and pleasant. The vast majority of pupils were cooperative and were able to work independently, in pairs or groups as directed. Very few refused or were unable to participate fully or take an active role in their own learning.

It's genetic so it's unsurprising if it runs in families.
Im autistic, as are both my sons.
My niece is undiagnosed but clearly ND! Ive been saying it since she was 3. She's a grown woman now.

Growing up, I always knew my family was different, it wasnt until my sons came along and were severely autistic and during their assessment professional attention turned to me that it all fell into place and hen I realised my dad's strangeness, my sister's... all ND.

There's something very wrong with my mother too but its not autism.

Also what is 'managing well'. DS is autistic, I'm not diagnosed but 'passed' the triage so on the waiting list so must have a higher chance of being autistic than average!

You'd probably have thought I was fine back when I worked in retail, but I had to quit the job after three years because I was fantasising about harming myself to get out of going in. I was not fine, but if I'd served you on the till or helped you pick out a party dress for your child, you'd never have known.

If you are ND then it's highly likely your family are and you're drawn to people who are similar to you, so your friends are too.

My mum's family - four siblings, loads of kids and now grandkids and not one of them remotely asd. They are all mega sociable, sporty, outdoorsy people with few over-obsessive hobbies.

My dad's family - nearly everyone is asd. No one was diagnosed until the 90s but you can see the traits so clearly in my dad, his sister, his parents, my cousins.

My brother and I have a lot of traits but weren't diagnosed. Both his sons are diagnosed. I adopted - guess what, both children were diagnosed!

As a result of having children in the asd world, I ended up knowing a lot of parents with asd too. I get on so well with them.

My husband's family is huge - his mum was one of 9. Not one relative has any traits

Two of my children are autistic. My cousin's daughter is autistic and my husband's cousin has two children who are autistic.
One of my nieces is waiting for a diagnosis but it's very likely she's also autistic. I have a strong suspicion my dad is also autistic but as he's 82 he's not likely to bother getting a diagnosis.

My friend shows so many signs of autism. She's undiagnosed and untreated.
She knows she has ADHD (undiagnosed but again so, so obvious) but she is surely AuDHD.
She doesn't know that she is autistic too. All her strategies and adaptations are unravelling for her at the moment because she is peri.
Constant burnout and in trouble at work too.
She'll never go for a diagnosis because it costs a lot and she will be screened through countless questions. She hates being perceived and hates lots of questions.
From what she says about her mother (deceased in her 60s) - I assume that she got it from her.

My DD does this - I will be in the middle of explaining a question that she has asked and she ms literally just stop I’m bored now.

although one of the areas we need to work on is her inability to understand why people might think she is rude. I fully appreciate she doesn’t mean to be but her inability to be anything other than direct and to the point (and walk away!) means she gets in a lot of trouble for defiance and rudeness at school.

Two of my nephews have a diagnosis of autism. 1 niece dyslexia, my daughter visual processing disorder and hypermobility, my sister and I dyslexia. My Dad almost certainly has some neuro diversity ( we all suspect autism) but he’s 84 so as a child he was just pigeon holed as naughty. My Dad has had a melt down because someone used the ‘breakfast mugs’ in the evening.
If a new person meets my family enmass I have to warn them that my family will question them like the Spanish Inquisition, it comes from a place of genuine interest - but none of them have any idea of boundaries or pacing questions - they all want all the information now. If it is a family party there will be around 40 of them doing this!
DH didn’t read till year 4, left school with zero qualifications, then got a degree in his 30s and is now one of the key opinion leaders in his field - so likelihood of some ND is very high. His industry likes ‘blue sky thinkers’, but also people who thrive on process - they work in different areas, but interact this is always interesting. DH is very process driven.
Then I also work in an industry that selects for ND as it needs problems solvers who can think out side the box - one of my team has ADHD, but I spend my team managing the clashes of last certainly other ND.
All of this can lead to times where DH, DD and I are all at home, but all overwhelmed so are off quietly alone doing which ever activity we use to manage our feelings of being overwhelmed.

My son has the whole spectrum of physical issues and there are moves to place this type of ASD into a separate category like profound ASD and there is certainly no masking.

inability to swallow for 2 years plus
pneumonia from above
pooe inability to defend body so my son had cellulitis as a toddler
profound fits
severe glue ear requiring 2 sets of grommets and adenoids removal
inability to sleep so melatonin
inability to poo with severe constipation and now a permanently stretched bowel
severe dyspraxia
severe working memory disorder
severe receptive language impairment
issues with expressive language due to false starts
complete lack of body awareness when younger eg touching nose impossible
Major SPD and returning some OCD
Noticeable swift mood swings
small head or microcephalic aa a baby
low muscle tone / retained primitive reflexes

Masking was never an option and sadly we are let down by the one category of ASD - it’s lost its meaning.

When someone diagnosed with ASD as an adult is placed in the same category as my son it is clear they have had different experiences. For my o wondered if my son would live and for them they were masking.

For my son his childhood has heavily scarred him as he was not able to do sports at all ( had to be helped into the sack for the sack race and taken off curriculum) He was unable to access the canteen and needed all sorts of adjustments as even a fast pass did not work and he starved. He was pooing only his pants until aged 11 when they sorted out better meds and had all the pain and suffering.

i wish that people would volunteer more at neurodiverse groups and see the reality of what disability is at the lower percentile range eg in the 1 or 2 percentile. These adults cling together as they have no friends. They need organised groups to socialise or have to be velcroed to a PA.

I am most likely ASD by the wider definition . I do not say that lightly. Someone we know is an Ed Lstj and ran a school for ASD and nagged me to be diagnosed. I do not see the point as with it I am not disabled and can seemingly ‘mask’ and get on with things. We have no funds in this country and I mix with the adults and kids with high needs who will depend on the state to exist at all.

My son has no concept of masking. At aged 22 if he needs to talk to himself he does. If he needs to flap he does. He can’t help his wild mood swings - it’s hard to keep up. 2 days ago he made a noose with electric cables as he did not like a conversation I was having with his PA . Ten minutes before that he was all smiles. He keeps you on your toes.

I strongly worry about his future as the state gets eroded by the widening of definitions and more and more people wanting to access things like pip.

My uncle, my son and his father, both of my nephews. My best friend has three adult children. All three.

The sleep, gut issues - allegeries/hay fever and asthma and joint issues are common in my family.

Most family members though just carry on as GP aren't interested or can't help - so it help ourselves or cope till we can't then it looks like it's just that one member of the family when it's rife in all.

The sleep issues we'd spendt years managing as best we could were according to assessors a clear sign of ADHD.

I didn't realise autoimmune conditions were also associated with ND. That resonates a lot with my family - my DC and my parents! My GP was a bit shocked when I listed off all the autoimmune in my close family.

I do hear the challenge with the wide spectrum. Not sure what the answer is as the people I know who are probably considered 'high functioning ' are not really high functioning. For example one became extremely reclusive and hardly left their house in 30 years.

The issue with the word “spectrum” is that people think it’s a spectrum from a little bit autistic to extremely autistic. It’s more like a colour wheel, autistic individuals may find some areas less of a struggle than other areas.

A GP friend of mine said that the current estimate could be anywhere between 25% and 40%.

I have one adult child with a formal diagnosis but realistically all my kids are neuro divergent. If your kids are, you are....and/or their biological dad. My husband couldn't possibly be 😉

Also, if you are my friend, you are almost certainly neuro divergent 🤣

My nephew has a diagnosis... in retrospect I'm sure my late aunt was autistic and pretty sure my dad (her brother) is too.

This. Same as ADHD.

If you have lots of neurodivergent friends and family there's a fair chance you are too.

Indeed one comment I've heard is the best thing doctors could do when they had a child diagnosed is to also to automatically consider medication for the parents!

Of course usually they are compliant and participate and endure it, until they can’t anymore and end up out of school with a complete mental health collapse. The environment may seem calm to you but is totally inappropriate for many autistic children due to the sheer number of pupils per class and the level of noise and social interaction demanded. What you see at school is the masking. It doesn’t mean they are “fine”. This is the mistake teachers make over and over again and it’s so depressing that so many still haven’t grasped this even with all of the research demonstrating this unequivocally. In their ignorance they continually expound this “they’re fine” nonsense about any child who is well behaved and contains their distress inside, causing immense and irreparable long-term damage, and they almost always ignore the parents who actually see the damage when it comes out at home and have to continually pick of the pieces of their children who have been smashed to pieces by the school children and desperately try to glue them back together, over and over again.