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!

There will always be deluded people who live in fantasy worlds. It doesn’t mean we should pretend their fantasies have any merit or let them drive public policy, which should be based on evidence.

Yes, many teachers are bullied into compliance, over unlawful behaviour towards disabled children or even safeguarding issues. The state education system is now rotten to the core with law breaking being purported as normal: the rotten apples have spread their mould to almost the entire barrel. There needs to be a very robust regulator to root out every single mouldy one and throw it in the trash or the whole thing will continue to decompose.

Anybody who cares about children at all should watch this broadcast.

My younger daughter was excessively chatty and some people thought that meant she couldn't be autistic as she had such "good" social skills.

But it was a masking technique. She didn't quite know how to act around other people so she had strategies instead. People often her annoying and inauthentic.

Later she was diagnosed with a clinical speech and language disorder and went to a speech and language school where they tried to teach her not to be so forward, but it never really got better.

The big problem we had was that she would talk to anyone - teachers, bus drivers, the postman - like they were her friends, like she didn't understand hierarchies of people. My other daughter has autism too and so do my nephews and none of them do this.

Autism can come out very different in different people. Your daughter's behaviour could benefit from some speech and languagecsupport tbh. It will make her vulnerable when she is older and out on her own.

It doesn’t sound that unusual for an autistic girl. Autistic people are individuals as well as have as much variation in personality as non-autistic people. That said, it may be worth you considering if actually she has ADHD as well as autism, because that combination in girls often classically results in the type of behaviour that you describe, but then extreme exhaustion after social interactions. Hyperfocus on topics of interest, talking incessantly, asking endless questions, immense stubborness but also huge sensitivity (which they hide around people they don’t know, pretending to be very confident) and sometimes all of the questions can be a combination of the thirst for knowledge but also partly a defence mechanism; asking others questions as a simple way to engage (because people generally love talking about themselves) without having to reveal too much of themself to others, so part of masking. It’s hard to say though from such a brief description because autism is a neurological condition, it doesn’t determine her personality!

Also, please let me know where to collect my riches. Having autistic children has so far cost me a very high sum of money in legal and medical costs due to illegal behaviour from schools and Local Authorities and the failing NHS (so paying for these services twice, through my tax and then again through post-tax income), as well as it having cost me my career progression because I have children off school for months at a time, and my physical health, not to mention the trauma that this illegal behaviour from schools and the Local Authority has caused to my children and the lifelong damage that has done during their formative years, and the family time that’s been stolen from us while they are little with me instead having to be locked in my study preparing legal paperwork to try to force these abhorrent human beings to simply comply with the law and do their jobs (while also being expected simultaneously to fund their salaries!).

I’d love to know where to collect these “riches” or, as a minimum, a sufficient amount to refund me for the large amount of money these incompetent and disgraceful people’s illegal behaviour has cost me, so if the “many” people with this “perception” could kindly direct me to where I can at least collect a refund - if not some compensation to put us back in the situation we would have been in if they hadn’t been breaking the law for the last 5 years - that would be lovely, let alone “riches” 😆i.e. me actually getting MORE money than I started with before these sub-humans having trashed our family life, health, finances, my career and my children’s education to date.

This is very exciting news! I can’t wait to hear where I need to go to collect the cheque which - even for a basic refund - will now be well into 6 figures.

Loads of neurodiversity in my DH’s family

DS has ADHD (diagnosed) and probably autism (will be a few more years before he gets a diagnosis)

DD has dyslexia and some ADHD traits

DH has some ADHD traits

Lots of friends have at least one family member with ND

Me and DD have ADHD, DS diagnosed with Autism yesterday, Dsis has ADHD. A few women I know seem to think their kids have autism/ADHD, but they're not diagnosed.

Sorry I haven't come back to post. I find that statistic fascinating. Also the idea that people with autism tend to gravitate to people with autism so there may be clusters, makes so much sense but it never would have occurred to me.

My eldest daughter and both my brothers are diagnosed with autism. My husbands brother is diagnosed with autism. 2 of my friends are diagnosed with autism, 2 others diagnosed with ADHD. They all have children that have been diagnosed with either Autism or ADHD. 1 of my husbands friends is diagnosed with Autism. I also have a friend who isn't diagnosed but I strongly suspect is ND who has a brother diagnosed with Autism and both her kids are on the pathway for diagnosis.

My son is complex needs - profoundly autistic, with limited communication. He also has ADHD.

My partner is diagnosed autistic. My FIL is likely both, but undiagnosed.

My friend has 2 autistic boys - completely different profiles. One similar to my little boy, the other verbal and without cognitive impairment, but huge sensory and social issues.

Another friend is AUDHD, diagnosed as an adult, her son is autistic including ARFID.

Quite a few in my family, but it's genetic.

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.

• 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 🤷🏽‍♀️

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 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.

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.

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.

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 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

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:

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.

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.

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.

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.