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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

How common is ASD

131 replies

glowyjuice · 04/08/2021 21:29

Hi I'm posting this as just to see what other peoples opinions are, I've read that about 1% of people have a diagnosis of ASD, I'm wondering do you think taking into account those who are undiagnosed would this figure be much higher? I do sometimes wonder how many undiagnosed adults or even children there are out there.

OP posts:
BlackeyedSusan · 05/08/2021 01:30

Quite a few probably. Especially women and girls.

MistyGreenAndBlue · 05/08/2021 01:44

If you believe mumsnet, almost everyone.
Until they hit 60 and get dementia.

PumpkinKlNG · 05/08/2021 01:49

My son has been waiting 3 years for a diagnosis

BlankTimes · 05/08/2021 01:56

Was it just ASD alone you were wondering about, or neurodiversity in general, which will obviously amount to a much higher percentage of the population.
Would you consider taking into account that a lot of other conditions can be co-morbid with ASD but can also stand alone.

GiantToadstool · 05/08/2021 02:00

1% officially but it wasnt really diagnised much when I was young.i would like to know if I am as an adult but assessment would be really hard to access.

BlankTimes · 05/08/2021 04:21

assessment would be really hard to access

It really isn't.

Do the AQ test online, aspergerstest.net/aq-test/ take the results to your GP if you score within the parameters for the possibility of ASD, ask for a referral. Your GP will explain how long the NHS waiting lists in your area are, be prepared for a good 2 years. He will also be able to give you a referral for a private assessment, or look for a diagnostic service in your area via the NAS www.autism.org.uk/directory

FrangipaniDeLaSqueegeeMop · 05/08/2021 04:44

The figure will most definitely be higher, getting a child diagnosis is not easy and of course all the adults who have it who wouldn't think twice of reaching out for a diagnosis, won't be taken into account on that figure

OffCycling · 05/08/2021 04:48

My husband and I are both almost certainly on the autistic spectrum, as are our children. We also recognise autistic traits in all of my immediate family and many of my extended family, also in about half of his family. None of us are diagnosed although it seems to be widely accepted within my family certainly - as my aunt recently said, she's sure most of us would pass any tests with flying colours! I asked the GP for a referral in March, in June I received a letter saying they were currently assessing those referred in December 2018. I'd estimate it's far more prevalent than the official statistics suggest.

XDownwiththissortofthingX · 05/08/2021 05:11

If you believe mumsnet, almost everyone

This.

Between 1 in 60 and 1 in 70 of the general population, which is why I've always found the apparent 98% incidence in Mumsnet DC's a bit Hmm

unidentifed · 05/08/2021 05:14

1 in 57 in the UK. 2/3 of these individuals are males. I believe this is 1.76%.

EssexLioness · 05/08/2021 05:35

The figure is thought to be a fair bit higher but estimates vary. Still pretty uncommon though. I think sometimes one’s perceptions vary depending on circumstances though eg it tends to run in families. Both myself and husband are diagnosed, my FIL prob has it too and my friend’s daughter is autistic. Therefore it seems quite common in my circle and i sometimes forget that this isn’t the case

Popsicle438 · 05/08/2021 05:38

If you believe mumsnet, almost everyone
This 100%. I so often wonder why every other poster has a child with ASD and/ or SEN. Is it that these posters are more likely to ask for advice?

Sleepyblueocean · 05/08/2021 06:01

If a discussion is about ASD then people who have or have a family member with ASD are more likely to respond. Same as a discussion about anything else. People with an interest in it are more likely to respond.

Sleepyblueocean · 05/08/2021 06:04

1 in 7 children have SEN.

Vanishun · 05/08/2021 06:31

My personal guess (based on absolutely nothing really except my life and experiences!) is that it's more widespread than we'd think.

If we ever got to the point of brain scans for everyone somehow, I wouldn't be surprised if we saw more like 10-20% of people with neurodiverse brains. It's only the real "sufferers" and extreme cases that get diagnosed.

In terms of representation, I've always thought autistic women are just much more likely to enjoy safe online social platforms like mumsnet, so are probably over-represented here a bit.

It's a friendly female centred community where you can vaguely learn the "rules" over time. You can be anonymous but participate at the same time. You can name change if you've said something embarrassing. You can find people with the same interests. You get to socialise (or feel like you're socialising) but without having to deal with the difficulties of real life friendships. (Well, that's how I feel anyway.)

Likewise, parents of autistic children are probably more likely to look for help online.

Elephantsparade · 05/08/2021 06:49

As a parent of a child with ASD, I was told 1 in 52 but with missing girls i think its 1 in 30.
As for why we are on mumsnet in high proportions. I find a lot of parents like me get quite cut off and isolated as our childs SEN takes up a lot of time and limits chances to go out so its fills a gap. I also spend a lot of time in my car waiting whilst appointments happen or my child attends their school on part time hours and its something to do.

SaltySheepdog · 05/08/2021 06:54

I recon it’s similar figures to dyslexia. I know lots of people with strong traits similar to those diagnosed.

whistlers · 05/08/2021 07:07

[quote BlankTimes]assessment would be really hard to access

It really isn't.

Do the AQ test online, aspergerstest.net/aq-test/ take the results to your GP if you score within the parameters for the possibility of ASD, ask for a referral. Your GP will explain how long the NHS waiting lists in your area are, be prepared for a good 2 years. He will also be able to give you a referral for a private assessment, or look for a diagnostic service in your area via the NAS www.autism.org.uk/directory[/quote]
Just got 38 on that test. Says High probability.

Not sure what to do about that!

Awalkintime · 05/08/2021 07:34

I have a GP appointment today about it as I suspect I am and have for a while and a friend and my mum have also commented that they think I am. My dad certainly is that is very obvious but is undiagnosed.

Sleepyblueocean · 05/08/2021 07:48

I think more parents of children with ASC are likely to be at home rather than out doing stuff because our kids can't cope with going anywhere or there are no suitable activities for them to do. In the summer even outdoor spaces can become too busy. Being online is an easy distraction from any upset that is going on and for lots their only social outlet.

RocketPanda · 05/08/2021 07:55

MN attracts more parents of ASD children because social isolation is more common in parents of neurodiverse children.

Until girls and women are tested using a female based diagnostic instead of the traditional male based we will never see the true figures for ASD.
Personally I reckon for every child diagnosed the parents should be offered testing.

GiantToadstool · 05/08/2021 08:51

RocketPanda exactly. I don't check all the right boxes on an initial screening tool. But I have an autistic daughter and highly obviously autistic father. OT friends who work in the area suggest its likely. I have done a lot of the online training with Autism UK and all the stuff around women presenting differently hit home (especially after however many years of masking.) There's been some good stuff online around women with autism that I've read and I've got some books I'm loooking at. It can be very difficult for women to get referrals under male criteria and not all of us have money for private 🤔🙄. And not all adult women feel they need the diagnosis. (I would if I had money, but I have a ton of health needs that are more pressing too .)

Anyway that aside I'm not surprised autistic woman would be attracted to online discussions. Online conversation goes at a controllable pace, don't have to deal with body language or expectatipns of the other person of "getting it wrong", doesn't have to be at social times of the day, easily accessible without making complicated arrangements to meet up.

As for parents of SEN kids it really doesn't take much imagination to work out why it might be easier to discuss online does it?!

All t

Clocktopus · 05/08/2021 09:28

1 in 7 children have SEN.

SEN doesn't necessarily mean a child has a disability or health condition though, SEN relates to educational needs where a child needs more support than their peers in order to access the curriculum and make progress. One of my DC was a very reluctant reader and fell behind with reading to the point that they were on the SEN register at school. They got extra support with reading, some support in lessons where solo reading was a big factor, and they had targets to work towards. Six months later they had caught up, was reading with more confidence, and they came off the register.

You can have SEN and no corresponding SN (special needs) and visa versa.

Two of my DC have recognised SN (ASD in the main with some co-morbidities). One has no educational needs and doesn't need specific support in school at this time. The other has various SEN and has an EHCP in place with specific support measures including a TA.

Ponoka7 · 05/08/2021 09:38

I don't believe the official figures. We know that women/girls are underdiagnosed because we present differently. Until I had a DD with ASD I just thought that I was a bit strange and didn't get people. Now I realise that I'm on the spectrum and possibly have dyspraxia. The dyspraxia thing has come about because my granddaughter is going through diagnosis at the moment. Through my eldest having dyslexia I realise that my GM probably had it. But then you didn't need to be able to read or write. Her business savvy and work ethic was enough.

x2boys · 05/08/2021 10:08

My son was diagnosed with with autism at three, its a not particularly helpful diagnosis tbh as he has extremely complex needs and is non verbal, the autism spectrum is so huge, irl i just say hes severly disabled as the autism diagnosis means nothing in terms of explaining his needs.