How common is autism among close family and friends?

I was recently at a family wedding and realised that our neurodiversity runs rampant through it. I didn't realise it until I saw us all together in one place.

There is a genetic link between families with ND. Some services will screen the parents if a child attends for assessment because the link is strong.

Thank you. And yes, I agree: it’s a word often used inaccurately to describe a factual and typically autistic style of writing.

I am so sorry to hear what your family has been through, as well. It is horrific.

There are a cluster of conditions which are commonly co-occurring which are things like dyslexia, dyspraxia, ADHD, autism, OCD, EDS, POTS, fibromyalgia, hypermobility, allergies, dysautonomia, I've probably missed some. Being born premature also has an overlap with several of these (it is likely to be causative). I think this is why a lot of people find the "neurodivergent" umbrella to be useful because it can describe a kind of sense that there is some common thread running through several of these conditions.

I think dyslexia had its big recognition movement in the 90s/00s - there seemed to be loads of children at my school diagnosed with dyslexia. I suppose because it is fairly easy to spot and tends to directly cause issues with learning to read/write, which obviously are a big focus at school.

When I moved to college post-16 and studied a creative course our course leader had a whole thing about dyslexia, because her daughter was, and how dyslexic people are more likely to be creative and said if anyone felt comfortable to share, to raise their hand if they were dyslexic, and it was nearly half of our class. This made me curious as well because out of my friendship group at secondary school we had been 60/40 dyslexic and not, and in my friendship group outside of school I can't remember now who was and who wasn't but there were definitely more than should have been statistically representative. Friends I made at college outside of my course were also something like 80% dyslexic. Out of all the long term relationships I've had, the two most significant (including DH) were dyslexic. I am not - I could read within a few weeks of starting school, aged 4, and have always found reading/writing/spelling to be basically instinctive. So it made me wonder why it was so overrepresented in my friendship group - I was later diagnosed with ADHD and looking back, I'd be astonished if most of my dyslexic friends don't actually also meet criteria for ADHD or ASD.

It's not on the website any more, but the Lorna Wing Clinic used to have a short history of autism diagnosis on their website where they said that this was a fairly common pattern - that in the late 90s/into the 00s dyslexia was being widely diagnosed but that many children identified as dyslexic at this time would also meet criteria for ASD or ADHD but this was much less likely to be picked up and a lot was explained away by the dyslexia (because this can also cause processing and sequencing issues).

Before my son was diagnosed at 2 (he's now 8), he's on the severe side of the spectrum, I didn't know anybody know of anybody who was autistic but now I can definitely see traits in the family.
To be honest I didn't know much about autism and it was very much something that happened to other people.

My son was diagnosed mid way through primary school, Dh and I last year. Most of my friends are neuro diverse, or have a neuro diverse child. I think that is because you meet other parents with similarly diagnosed children. I also seem to have a radar for like minded people.

Dh has a brother who almost certainly was on the spectrum and I believe one of his nieces is. His cousin also has a child on the spectrum.

My maternal side of the family 4 of 5 cousins diagnosed and all of their children are neurodiverse
Thw paternal side of the family no diagnosis in my generation but many work as engineers or in computing and have traits.
7 of the children have diagnosis

In my friendship group, everyone has at least one child with diagnoses or awaiting diagnosis

As a number of people have said, genetics play apart and we gravitate to those like us.

This is a serious question, so I hope it's not offensive or worded wrongly. But how does one know they've got suspected autism and not another issue (for example anxiety) or it's just their personality? Thank you.

I don’t find it confrontational. That word is always produced when posters reply with facts, highlight ignorance- and are autistic themselves. Not nice.

Well actually after the taxes my husband and I have paid I too would have liked adequate healthcare, treatment and education for my children. We didn’t get any of it and the money we have had to scrape together for private care to keep my dc alive is frankly appalling. Then you get the care costs and impact on our jobs. Where isthis money we’re supposed to have had from the tax payer because we haven’t seen a penny.

Might I add that we are a relatively ok off family so the carers allowance I get got a 40% tax hit.

My sons pip is taken with weekly counselling and PT trainer.

He gets UC for university as he is unfit to work but then we have had to have him far longer as a child at home eg 2 years life skills and 3 years sixth form.

There is zero financial benefit and huge costs.
Even our wills cost thousands as we had to have specific vulnerable person trust drawn up.

We will have to share some of DH retirement monies to put a hefty house deposit down for DS as the alternative will be supported living or HA at their will placement. The mortgage will be arranged by a HA.

Over the years we have spent thousands on SALT therapy and various reports eg Ed Psych SALT and OT. The NHS reports reached the same conclusions but are scant eg 2 sides. The NHs tended to say ‘ it’s really bad and nothing can be done ‘ eg his memory impairment meant his receptive language could never improve.

I had a holiday without my so this year and event it was a huge effort in planning.
i had 2 PA staying at my home. Its all so intrusive.

Frankly I hate all of it. I want to wage a magic want and make it all go away.

Maybe in the 19th century he would have been the lad who was slightly odd who could be found a job in reality he would not have survived.

No the reason being people like Kemi Badenoch and Bigel Farage spread such myths re autism and others fall for it. hugely offensive and abelist to boot

There is a different category of ASD emerging for those with neurodevelopment disorder with clear physical issues. As such my son could not swallow for 2 years from birth in that this epiglottis failed to close so all fluids went into his lungs He was tube fed. This was accompanied by microcephaly on the 9 centile.

He had associated developmental delays eg delay in developing his immune system he was hospitalised with cellulitis at aged about 3.

There was development delays in several areas.

He has profound fits lasting over an hour and even now has these odd sleeps in inappropriate places. We await neurology on this.

Also he had severe bowel incontinence and is managed on bowel medication - he now has a stretched bowel shown by on x ray

Hw has hypotonia which we improve with lots of exercise but nonetheless it’s there.

There is also associated severe dyspraxia ( 0.5 percentile) severe receptive and pragmatic language. This is accompanied by paranoia as when your semantic pragmatic score is that bad life is scary.

Development was heavily delayed eg alternating feet at aged 10. Touching nose at similar age.

Yet he has a spiky profile and goes to university with a PA ( to ensure he checked emails / gets to the right place at the right time/ supports him to try to engage in work shops/ help him navigate corridors). Part of the jobs is to wake him up a Sen can fall asleep any where eg on buses etc

As a toddler he had a VEP done and that showed latency of the white matter. I was told by the neurologist to brace for global delays but here we are

So for ASD there can be hard physical signs for some that can’t be imagined/ made up etc. You can imagine profound fits or an epiglottis that does not work. You can’t fake hypotonia. You can’t create white matter damage.

Yea the hourly clock dose not function eg awake at 3 0 clock. Having to be told to go to bed. Melatonin taken.

There are also odd things like a desire to make a cake ( inedible) at 10 o clock at night. Sometimes our World seems a bit mad. He tried to meet a ‘friend’ and got the wrong time / had the wrong idea so his dad had to sit with him in the pub whilst he ate waiting for the friend to show to go to a theatre performance. This was his second attempt to meet a friend/ friends. Both were a disaster eg wrong time / place / dare - he can’t make arrangements. We run his diary.

He can’t seem to ask people about themselves. He would like to have friends but does not know how it works eg asking questions about them.

Due to our journey, there is a strong suggestion that our position was caused by a genetic predisposition to ASD (mild enabling success in life) combined with an assault on the brain by a virus in utero ( CMV) This has led to all this. I think that the viral impact on babies should wn looked at more. CMV is more devastating in women who delay having kids until late 20 or 30s when they lose their immunity and then get exposed to nursery aged children after their first child’s birth. So that could account for an increase in ND.

Despite all that I had a neighbour saying he does not seem that ASD. However as we ( his team LA / mentors) can’t stop him talking to himself I am not sure what visual spectacle they want. Had they been in our house last week, they could have seen him make a noose with the charging cables of his lap top whilst his PA and I were talking walking around and saying ‘o have to die now ‘. His Pa and I thought ‘jeez’

I have a neighbour saying that and in contrast a mentor said this about my son

XXX is a lovely young man but providing support
for him is very difficult - he has very complex needs

i also had life skills deciding that he was not overly safe around for example a microwave. One day they send him home for safeguarding as he was having an incident and expressing desires of death.

I have constantly had to deal with the opposite eg things my son could not do because he was too ASD eg years ago he could not go to a local SEN school as it was for learning issues eg dyspraxia and dyslexia and they said he was ‘ too autistic for their other students’. I desperately told them ‘ he can overcome that I will tell him to mask it ‘ and we agreed another trial day but he decided to stim all day in the different school surroundings. ( even through he knew the building well as he were there for tutoring) The nearest proper ASD school for academically ok kids would have been boarding. The LG gave me a free hand as we had an NHS consultant recommendation for 5:1 class size due to hearing / very severe receptive language issues. I could not face that and kept him mainstream.

This is the deranged Hell I live in when a neighbour can say that and then a mentor/ school head / life skills says the opposite. This is the issue - the neighbour does not work with my DS but the mentor and life skills did.

I try to explain to my neighbour that telling me that my son does not ‘look ASD’ is not helpful - it’s actually called micro aggression. I don’t say it like that as it’s tooo overt.

My neighbour is kind and means well. They want to say he seems normal. I think that they think this helps or they think he’s not presenting like Rain Man.

Yet there is me telling my DS not to flap his hands whilst walking down a road or talk to himself as it looks odd.i am so scared about his being the odd ball in the community when we ( his parents ) die.
I have made so much effort to ensure he dresses well so he does not look ‘different’ To overcome the hunched ( retained reflexes / anxiety caused by ) ASD walk we bought him a back support. He tiptoe walked at aged 3 and had paedo boots as part of that.

I have to deal with the reality of the experts and their opinions which have broken my heart over the years . If my son goes for a walk with me and this neighbour and has a conversation about his hyperfocus that’s lovely. If he can present normal for that 20 minutes I am glad but I have the reports from school ( sixth form)
saying my son was bashing his head on a desk drawing blood. I had reports from life skills saying similar ( he was hitting his head). Recently I get calls from a disability agency telling me that was an emotional flare up. Or I get his Pa telling me about some event / misunderstanding. This is the horribleness of the reality I live in.

I also apologise if my style of writing was perceived as confrontational. Perhaps you can excuse me that given what I have described that my family has been through, and then having read the comments on this thread.

Thank you for your later comment, which was more reasonable.

I would, however, like to make four points:

1. Making sweeping statements like this about how people are trying to get autism diagnoses to get money from the state causes immense harm and increases the discrimination against the vast majority of autistic people who struggle an immense amount with failing services and are largely hugely financially disadvantaged by their autism, not benefitting from it.

2. Whether my children deserve to go to school and have adequate medical care shouldn’t be dependent on the fact that I have already paid for it many times over in tax. That makes what the state has done to my family even more egregious, sure, but ALL children deserve school and healthcare. These are basic things in any civilised society and if this isn’t provided then what it the point on anybody paying tax at all?

3. Autistic people (like me) are vastly over-represented amongst our highest taxpayers: much higher than the prevalence of autistic people as a percentage of the population. It’s not remotely unreasonable to expect adequate services for autistic people to be funded from general taxation given our outsized contribution to the treasury as a group. It benefits everyone for the right support services to be in place so autistic people can thrive and make the hige contributions to society which they have done throughout history (many of the most famous artists, scientists, inventors, mathematicians, composers etc).

4. Please don’t make such comments in future. They increase the general ramping up of hatred against people with disabilities by horrific politicians spouting nonsense on topics of which they know nothing. I’m an economist and I can tell you with no doubt at all that adults or children with autism are not the source of the UK’s economic woes. In fact, the few growth industries we have left are heavily populated by a very disproportionate percentage of autistic people, so these prejudices are not only unpleasant but also self-defeating for the UK populace as a whole and I encourage you in future to rebut them rather than repeat them, albeit with your “some people think” caveat.

Entitled?

Because after paying tens of thousands of pounds of tax per year for decades I expect there to be schools funded that my children can attend and a health service that doesn’t put their lives at risk?

Ok then.

I am only “unpleasant to deal with” when dealing with unpleasant people who try to blame other people for their own incompetence, negligence or failure to even follow the basic legal requirements of the roles we as taxpayers are paying them to do. Or, of course, people who make ignorant and spiteful comments on topics of which they have demonstrated immense ignorance yet decided to comment, anyway.

Actually, @DrRylandGrace I’m sorry. You’re not entitled. You have paid tax and you should be able to access education and healthcare for your children.

I find your style of writing very confrontational: as though someone is shouting at me. I do need to be clearer: there is a Perception that those with autism get lots of benefits: I’m not saying that it’s a reality: but many people think that it’s the case.

the reason being that some of us know people who have barely worked a day in their lives that claim lots of benefits for illnesses that cannot be physically proved:

I will say that you do sound like you would be really unpleasant to deal with, and if I’m honest, very entitled. The world owes none of us anything f

I’m not saying you are. I’m saying that it’s a common perception: not a fact. It’s the perception that needs to be stamped out.

I checked back today @Widoeeyes hoping that you’d have provided the details of where I can collect the refund for the six figure amount I’ve had to spend on top of normal parenting costs, simply because my children are autistic.

As I said, simultaneously I’m being expected to fund the salaries of the school and Local Authority and NHS staff who continually break the law and have illegally denied my children access to the basic level of education and healthcare that I’ve been funding for everyone from my tax money for many years, having been a higher rate tax payer for well over two decades now, and continue to be expected to do apparently, despite these services being denied to my own family.

Having to pay these evil sub-humans’ salaries — people who deliberately break the law at every possible opportunity to deny children with a disability adequate healthcare and education — while simultaneously having to fund private healthcare etc because of their failings and pay for expensive legal cases to try to get these sub-humans to comply with the basic requirement in the Education Act 1989 and set out in international law (that all children have a right to go to school - with which even developing countries are expected to comply) has cost me a six figure sum of money already.

Having children off school regularly or sometimes for months at a time has cost me my career progression and health, alongside having to spend 20 hours+ per week dealing with all of these despicable morons who don’t even understand their own legal responsibilities, on top of doing my own full time job.

According to you, “many people” say having autistic children is “a gateway to riches”.

So where do I go to get my riches?

Or, surely at least I should be able to reclaim the money it’s already cost me due to failing services behaving illegally and refusing to do their legally mandated jobs. That would be a start.

Where do I go to get my refund?

If you don’t know, perhaps you could ask the “many people” who you asserted have said that riches await us, then come back and let me know. That’s not much to ask, surely, if you’re going to make such assertions on a public forum.

If I at least get a refund for what it’s cost me in nominal terms so far we could have an extremely fancy summer holiday every single year for the next ten years and I could probably given them both a substantial house deposit when they become adults. And that’s aside from any compensation for the damage that these abhorrent people have done through their deliberately illegal behaviour, people who should be banned for life from working in any role that involves children or their welfare.

So where do I get the “riches”?? Or at least get my money back?

Awaiting your response.

Many thanks.

My closest friend's daughter was diagnosed as autistic nearly 30 years ago, and she's the only person with autism in my friends and family (as far as I know).

With hindsight, I think that I've taught a few students with undiagnosed autism over the years, but I still tend to think of it as quite rare.

My father and grandfather, and my father in law and his father were "probably" autistic, given that today we know more about the condition, but they weren't formally diagnosed. All the traits were there. But me and DH always just thought they were "different" compared to parents of our school mates etc., which was how they were perceived at the time. None of them were bad enough not to live a pretty normal family life, long term jobs, etc., but none of them really thrived in their jobs despite all of them being very intelligent/smart etc.

To a lesser extent if we think about it, both DH and myself are probably a bit that way too given our behaviour, likes/dislikes, etc., but again, not really interested in getting diagnosed etc., as we've lived our lives as best we could.

Thankfully DS isn't! He had tendencies during his childhood and teen years, i.e. no friends, obsessive behaviour/habits, eating disorders, etc etc., but since he went to Uni and then moved to a new city for his graduate job/profession, he's really changed.

I think a lot of it is learned/observed behaviour rather than genetic via DNA etc., at least for the more minor/moderate end of the spectrum. To an extent, I copied my fathers' and grandfathers' behaviour, noticed they didn't have friends nor a social life, etc., so it was kind of "baked in" to me through childhood. But I'm first to accept that I'm talking about the minor/moderate end of the spectrum and not the severe cases of autism.

Teaching is not parenting.

I have not been harsh on teachers. I’ve pointed out that many of them have absolutely no idea about autism except for a few stereotypes they’ve absorbed, and obviously only know a child in one context, so it is baffling that so many of them seem to think they are experts on the topic. I’m sure there may be exceptions but the majority have little idea about it which, as I pointed out earlier, is hardly surprising given that they receive no training about it from anybody qualified during their professional qualification and the CPD on it is generally useless.

• My dad has diagnosed ADHD and autism
• My brother has diagnosed ADHD
• I have diagnosed ADHD and it's in my records that I display numerous autistic traits and assessment is recommended.
• My daughter has diagnosed ADHD and autism
• my cousin has diagnosed ADHD

Nobody is diagnosed on my maternal side of the family, but My mum and and two of her siblings have clear ASD and ADHD traits.

My maternal grandpa also has a lot of autistic traits.

3 of my close friends have diagnosed ADHD, 2 have a lot of ADHD traits.

Pretty much all of DDs friends are also neurodivergent as well 🤷🏽‍♀️

This is a community where everyone knows each other. These were children that I saw out and about and still see them now as adults. Many were/are friends with my own children. Many came to our home. My children went to their homes.

I think you're being very harsh in your view of teachers. So many here find it difficult to 'parent' their own children. Imagine trying to teach/entertain/supervise 25+ children at once, on your own!

We always worked closely with the few parents who had concerns about their children, but we're only talking about a few.