To ask if your child or children have ASD

[Mumzoo]

Just something I notice on every thread on mumsnet, people mention their "child with ASD". It seems so utterly common on here that it makes me wonder if there are any families out there who still have no children with ASD at all. I have one with (not yet diagnosed but quite evident) ASD and one neurotypical. Growing up I didn't know any children with ASD until a boy joined our secondary school and we were all made aware of this by our teachers in a bid to accept him despite his "odd behaviour". That was one child in a school of 1200 pupils. Now there are one or two in every class. It's quite shocking.

I have no words to describe how much I love that last post jan

And hate it because it makes me sad, it is so, so true.

I have a child with hf asd.
In our extended family there are 5 people that I strongly suspect are on the spectrum but never diagnosed.
2 of my school friends were certainly on the spectrum, 2 more might have been. None were diagnosed as children. One I know was diagnosed as an adult. I’m not in touch with the rest.

I could very well just be seeing it everywhere but honestly I don’t think so.

Lower functioning children aren’t hidden away as they were in the past either.

To those who think it’s diagnosed too quickly, have you been through the diagnostic process recently? 😂😂

I think the latest figures from the CDC are 1 in 58 children diagnosed with a ASC.

I think a lot about where ASC was ‘hidden’ in the past. Apart from what’s been mentioned above - earlier deaths, institutionalisation - I think the fact that there was less pressure to achieve academically. If an acceptable route to working was leaving school at 16 and getting an apprenticeship in the job, it may have helped many children. For instance, I have 4 dc - two with ASD. After dd2 was diagnosed, dh and I realised how prevelant ASD was in our family going back generations. We think she’s fsmily coped by living in outback Australia and becoming farmers. An education wouldn’t be valued here, just strength and the ability to work hard. The solitude would have possibly been quite therapeutic. Dh had uncles who were virtual recluses.

I spoke to an ASD researcher who said he’d encountered this with the farming community also.

ive got 2 with it as well as many others each

in the 80s and 90s if they didnt have it severely or classed as classic autistic they would have been labeled as slow or a problem child(my partner was)and put in the remedial class or just left to get on with it

i know of 5 people that was in that class in the 80s and they left school middle 90s not being able to read or write as because soon as you were put in that class you were forgot about(well here in the valleys of south wale it worked that way) and just went through the system

they were diagnosed with different disabilities in their 30s and that only happened as their child had disabilities

JanMeyer said "The autism itself is disabling enough all on it's own, but what's even more disabling is the shocking number of people who refuse to believe you are disabled because you don't "look disabled", or question your needs because their tiny little brain can't process the fact that a person can be perfectly intelligent yet struggle with simple everyday tasks. Their helpful solution? "Just try harder.""

I wholeheartedly agree, the assumptions people make about autistic adults is astounding.

I advocate for an autistic adult who is not independent and cannot communicate well. At the hospital in the room with the Consultant, explaining the lack of client's communication skills, I said 'Adult cannot do XYZ"
to which the Consultant replied 'Don't be ridiculous, of course they can do that'

There are loads of other examples but I don't want them online/in public domain as I'm considering a formal complaint.

My autistic client does not want to return to the hospital because in their eyes the consultant blatantly lied, client sincerely cannot do 'XYZ'

add a few more stupid (for not taking autism into account) assumptions and stupid (for not taking autism into account) suggestions from other highly educated medical professionals and my client does not want to see any of them again ever.

Mumzoo - no, I didn't miss it, I'm just questioning your assumptions and the math that followed, simply because it doesn't correlate with what I know, both from people in real life and online. I mean for one thing, if ASD is so common and evenly distributed amongst the school population then why are parents of autistic children so isolated?
The only reason I know a lot of people with autism in real life is because one of the secondary schools I went to had an ASD resource base.

PegLegAntoine - it's funny, the OP wondered why there's so many autistic adults/parents of autistic kids on mumsnet, the conversation (well virtual conversation) we're having right now is exactly why there's so many autistic adults on here. Because I could never a) articulate what I wrote in real life or b) find someone that actually understands what I mean.

BlankTimes - Sadly I've had similar experiences with doctors as well. There's a GP at my local surgery who flat out doesn't believe in autism or learning disabilites. He refuses to write sick notes for adults (for claiming ESA) with learning disabilities as well, and basically accused one adult of faking their condition - this person went to a special school by the way. And that's just the tip of the iceberg as far as his ignorance is concerned.
"Of course they can do that" must be something doctors get taught at medical school, come to think of it social workers and other so called professionals seem to be indoctrinated with the same mantra.

JanMeyer

evenly distributed amongst the school population

Nobody knows how evenly distributed it might be amongst the school population but that's how percentages of a population work. 50% of cases in the whole of the UK could be in London yet based on the whole Uk population of 11-year-olds it averaged as 3.5%. One class will have none whilst another could have 25...but the average is still just over 1 child per class (assuming average class size of 30).

Oh..and to clarify I don't mean 3.5 is the average of 0 and 25! I'm just giving examples.

Or even 1. Now I'm not making sense.

Yes that’s a good point jan :) it was MN who gave me the confidence to go for assessment. I had posted a thread (different name then) asking what the hell was wrong with me, after yet another incident in which I’d totally failed to be a functioning adult. It all went from there really.

I’m lucky to be in a very ASD friendly community now (I home ed my DCs and it’s no coincidence of course that it’s more unusual to meet a family withOUT autism in it somewhere...so so many kids let down by a school system that cannot cope) but back then when I was floundering I’m not actually sure how I’d have managed without being able to talk safely on here.

The old institutions were huge the site of one near me is a pretty sizeable housing estate (and the Chapel building which still exists is the size of a Cathedral).
Higher functioning individuals went to special schools, so weren't seen much.
And even higher functioning often passed. Although the more volatile might end up in Prison, the less volatile were ignored. I know lots of people diagnosed later in life.

And of course MN is a source of support for lots of people.

I have one DD with high functioning autism and another NT DD.
It's only since having DD2 that I've realised that the signs were there from as young as 12 months but I never knew anything different at the time.
As PP have mentioned the special needs boards are fantastic on Mumsnet. I don't know anyone in RL who has a child on the spectrum and it can be a little lonely and isolating when you have a child with special needs.

@JanMeyer sorry I'm not familiar with Kaspar Hauser or Peter the wild boy, will shoot off and have a Google though, I don't think anyone can talk too much about Autism especially on threads like this.

I have family who works in a sen department (in a mainstream highschool that actually has several high needs students) and they are of the belief that autism has a strong genetic component- ‘quirky’ kids are often the product of quirky parents and grandparents.

HaveYouSeentheWritingontheWall - I read about Peter the wild boy in a book called Not Even Wrong: Adventures in Autism.
It's a great book and covers many historical examples of autism and how such things were percieved in the past, it's one of the few books written by the parent of an autistic child that I actually like. The only negative of the book is the fact the author writes about his meeting with Simon Baron-Cohen (whom I loathe with a passion) but other than that, it's a truly excellent book. It's so interesting to read about children who lived so long ago, and behaved exactly as some autistic children do now.

@JanMeyer thanks, I'll have a look for that book.

My DS 11 has asd, trust me they are not quick to diagnose it. It’s a helluva lot of hassle. I think we just didn’t heard about too many people with asd only severe cases because that’s what the media always portrays.

I grew up with autistic kids, we had a special school next to our and my best friends Mum worked there and as I was head girl me nd my best friend often went over there to play with them. Also had 2 autistic boys in high school...

@TaimaandRanyasBestFriend

However, I know heaps of middle aged & older males who probably would agree they are "on the spectrum" if you put it to them. None of them seem to think it's important. How nice for them. Is that to mean that children with asd do not struggle because you know some men who don't think it is important? My dh is most certainly asd and holds down a very demanding job, because he has trained himself to work with his traits and for him, they make him very organized and meticulous, which is great for his job!

@Didyeeaye - Obviously severe symptoms are problematic and need specialist support but I'm concerned we label behaviours a bit too freely. It's not just "severe" symptoms that require support though.

My dd is "high (misleading label) functioning" until she isn't functioning and then she can't even dress herself (at 10) believe it or not. Day to day, she can but get her on a day where her anxiety is peaking and she shuts down. She won't dress/eat/sleep/talk etc. Yet her "behaviours" suggest she is HF. She is when things are going well...

She had to shower the other day (she hates them, usually a bath girl) and she disassociated (shut down) during the shower because the sensory overload of the shower was too much. I had to wash her, wash her hair, get her towel and sit with her until she opened up again. All things she does quite happily for herself in the bath.

I still have to watch her in the bath, in case she dissociates (never has, thankfully). But tell me, when should I stop that? I have a friend who disassociates and walks off. She isn't safe because she has no idea what she is doing if you aren't guiding her. She's in her 40s. So there is a good chance my dd will be doing it as an adult too...

But yes, they gave her a label "much too freely"

I'm a social worker and see many children pathologised with these disorders that are perfectly normal for their development and temperament. So you have no background in diagnosis then? Righto, that makes you completely under qualified to diagnose autism/ADHD. To be honest, I think as a social worker you need to educate yourself and quickly because your "on the spot diagnosis methods" could cause a family great distress! I can't imagine raising my concerns with a social worker only to be told the behaviour is "normal" for their development and temperament. You think you know more than the diagnosticians. That's dangerous in anyone, let alone a social worker. It would interesting to see if you have imparted this bad advice to anyone you shouldn't have.

However, I know heaps of middle aged & older males who probably would agree they are "on the spectrum" if you put it to them. None of them seem to think it's important.

ASD is a medical dx which is not made quickly. process takes years. It is not a self diagnosis.

Until DS2 was born I'd only very briefly heard about ASD, mainly through films like Rainman - there was no one in my family who was 'quirky' nor at school.

Cue 19 years later as DS has been in SS since he was 3 and an active member of LD clubs (he also has MLD) and I'm also a secondary teacher - I've obviously become much more aware of the disability and the wide range of how individual the disability is.

Whilst there is no 'family history' my cousin's DD has also been recently diagnosed.

When DS2 was born I never envisaged that we would still have to organise care if we wanted to go the pub when he is nearly 20. Never thought we would spend half our waking hours fighting my LA for suitable education. Never thought we would have to advice DS1 that if something happened to DH and I that he has to put himself first and not allow SS to railroad him into being 24/7 carer for his brother

I mentioned the heaps of middle-aged males who seem to have ASD to say I don't think it's a new thing that there are so many people like that. Rather ASD got very over looked in past.

I think or know it has been a problem for some (I've known these people 5-50 yrs now) but it's their normal so they would shrug that opinion off. They tend to be deemed quite strange by most rest of us. Mostly kind, intelligent & generous people, though.

Current pregnant with DC1 so early days yet but I highly suspect I’ll have at least one child with ASD.

I think my mum has it although she’d never get tested. My two siblings and my cousin have it. It also sounds as if my grandad had it (all on my mums side). So there’s genetically something going on there.

What a fucking horrible thread.

Don't worry though OP, we're probably all just faking it for your attention.