How common is ASD

[glowyjuice]

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.

Or it could be that people with children with ASD are more likely to seek out support on an online forum, as there isn’t all that much support in real life?

No doubt, but I can't shake the feeling that there's a recent craze for picking up on any autistic trait and armchair diagnosing ASD.

You see it in threads that are in absolutely no way relevant to ASD support. 'MIL is being a cow. Me, DH, DD5 (ASD), DS3 (ASD)...' etc when it's nothing more than a whine thread about a cantankerous MIL.

It's at the point whereby its a novelty to find a DC referenced on here that isn't described as ASD or suspected ASD. No, just because he won't eat orange food and is fascinated with blue crayons doesn't mean he's nailed-on ASD.

There are more parents of autistic children and autistic adults online as there is very often a lack of RL support so people find their 'village' in online forums. It can also be a bit of confirmation bias - threads about ASD and other forms of neurodivergence will automatically attract posters with experience of this, these posters are also more likely to post seeking or offering support referencing their experiences.

Two pages into the thread and we're already having the doubting posts and the posts insinuating that people are making it up. In case you weren't aware, attitudes like this contribute to RL stigma around neurodivergence which is part of the reason RL support doesn't exist.

@XDownwiththissortofthingX

Or it could be that people with children with ASD are more likely to seek out support on an online forum, as there isn’t all that much support in real life?

No doubt, but I can't shake the feeling that there's a recent craze for picking up on any autistic trait and armchair diagnosing ASD.

You see it in threads that are in absolutely no way relevant to ASD support. 'MIL is being a cow. Me, DH, DD5 (ASD), DS3 (ASD)...' etc when it's nothing more than a whine thread about a cantankerous MIL.

It's at the point whereby its a novelty to find a DC referenced on here that isn't described as ASD or suspected ASD. No, just because he won't eat orange food and is fascinated with blue crayons doesn't mean he's nailed-on ASD.

But "armchair" diagnosis isn't an actual diagnosis. And most diagnosis starts with someone, usually a parent but not always, suspecting possible ASD etc. So I'm not sure why people get so sensitive about it being thrown in as a consideration.

And as for mentioning a diagnosis when there's no need (!) 1 why is mentioning it so awful? And 2 it might become relevant as the thread develops at which point accusations of "wow that's quite a drip feed" will derail the thread.

I shall make a point to reference my DC dx so you can enjoy the novelty.
ds2 also had Chronic Fatigue Syndrome. Unfortunately DS4 is NT no health issues[sad

The system is so crappy and under-resourced that you are looking at spending several grand to get your DC diagnosed and some help for them privately, either that or wait years and get thoroughly patronised by professionals who know less than you do. So it makes sense on a site like Mumsnet that posters (many educated and well off) have been able to seek diagnosis and help rather than just suffer.

As a teacher I concur with 1 in 30. About 1 in a class on average. Although some.private schools have higher numbers due to lack of support in state, see above.

There's a mainstream private school not far from me with 2/3s diagnosed SEN. That tells you something about lack of capacity.

I need to clarify I think.

1. I am not 'insinuating people are making it up', rather, as I said, I think there's a recent fad, craze, call it what you will, for picking up on any single autistic-like trait and jumping to the conclusion that is evidence of ASD. It's not helped by the oft-repeated nonsense like 'we're all on the spectrum somewhere/everyone is a bit autistic lol', because that then feeds into a perception that any behaviours that autistic people might display being witnessed in an undiagnosed person, is therefore evidence of ASD. In some ways its a good thing that there's an increased awareness, but I genuinely think there's also a growing tendency to suspect ASD where there really is no reason to.

1. I don't think there's anything awful about mentioning a diagnosis, my bemusement stems from the fact that is so preponderant on Mumsnet in particular that I can't help feeling a degree of scepticism. I fully accept all the points about online forums being a source of support, gravitation etc, but even considering this the sheer numbers of people claiming to have suspicions about family members being undiagnosed makes me think that there are surely one of two things going on. Either the accepted figures for preponderance in the general population are so wildly inaccurate that the people compiling them really ought to resign in disgrace, or that a significant number of mumsnetters are thinking they are seeing something that simply isn't there.

Again, I'm not accusing anyone or any specific individual of making things up, I just find the preponderance of alleged ASD on mumsnet difficult to reconcile with the wider world, and speaking as someone with a diagnosis, well aware of the stigma, with lived-experience of many of the co-morbid bells and whistles that are also stigmatised, and also having worked for years with vulnerable adults, it does irk me a little that armchair-diagnosing ASD seems to be all the rage right now.

threads about ASD and other forms of neurodivergence will automatically attract posters with experience of this, these posters are also more likely to post seeking or offering support referencing their experience

Absolutely agree

As for all the armchair diagnosis that takes part on MN threads, it's very rarely done by parents of neurodiverse kids. They are more likely to suggest an assessment would be a good idea and leave it to the individual poster to do what they want to.

The armchair diagnostics are much more often voiced by people who don't have neurodiverse kids and are not qualified to diagnose. They also reinforce the ghastly stereotypes (no eye contact, no empathy, easy to get a dx, etc. etc.) which parents are then left to correct.

People rarely use the SN boards to discuss these things, despite them being populated by very knowledgeable parents, instead they post on AIBU or CHAT so by definition they are going to get a lot of input from people who think they know the answers, but are actually just muddying the waters.

My son was diagnosed at 2.

I suppose you see it more commonly come up as it's parents looking for advice in many cases?

Many years ago before ASD was understood my son would just be described in horrible terms like "simple" or worse ones I don't want to repeat. People have always existed I don't believe the % of population is higher we are just better at detecting and diagnosing

I took the AQ test and got 50. Well that's something I wasn't expecting.

I've been on MN for quite few years and these are my own observations.

I think that a lot of nurseries have checklists that to them indicate neurodiversity and they suggest that to parents who up until that point hadn't thought their child may be anything but NT, so parents are shocked and panicked and post for reassurance or a second opinion.

If those parents ask on the SN boards, they are given answers, if they ask on the main boards and even if they describe quite a few traits, a huge percentage of replies use the phrase 'perfectly normal for that age group' which isn't exactly great either.

The nursery and education system should by now be spotting signs and accommodating neurodiverse children according to their needs but the system is inadequate, they miss most of the children who mask and only seem to perceive the ones who are disruptive or very, very far behind academically.

It's my own belief that primary mainstream education could benefit so many more neurodiverse pupils if it toned down the constant sensory assault in its buildings and had many less special event days and non-uniform type days, or made the non-uniform ones an individual choice without penalty. So many of the activities they see as "inclusive" are hell on earth for neurodiverse pupils.

As for the actual percentage of neurodiverse people in the population, I've no idea, but I'm sure it's vastly higher than the 1 in 100 that's often quoted, simply because so many children and adults are still flying under the radar of the current level of awareness.

The world is becoming less accommodating to ND people, so our lives are becoming more challenging.

Examples:

Loud noise and music everywhere.

Lights are brighter.

Hyper social activity is encouraged - eg social media.

People are more likely to voice their opinions now and seem louder and more outspoken. There seems to be more bullying now.

The workplace is more complex and competitive.

Extroversion is more highly valued now more than ever.

Technology is more varied and complex.

Systems are more bureaucratic.

People are more likely to take offence.

More traffic, people, buildings etc.

More novelty on a day to day basis like a pp mentioned - non uniform days in school. Also, social team building exercises in the workplace.

Life is faster paced.

It's difficult to earn enough money to get somewhere to live now.

All these things and probably more are putting pressure on ND people and we find it harder to conceal our difficulties.

It's actually pretty difficult to get an ASD assessment, let alone diagnosis, for a child. DD2 (13, dx at 11) waited 2 years from referral and it had already been 6 years since I'd first raised concerns when she was referred. She'd been in 3 schools and home educated by the time she was referred, because she fell apart at every transition point.

DD1 (15) has been at special school since she was 4, spent a year in the waiting list and has just had her first assessment. Before that we had to fill in 2 lengthy questionnaires and so did school.

@XDownwiththissortofthingX

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

100% of my DC's are autistic!

Don't forget that you hear about those who are; we are more likely to be stuck at home with autistic kids and often autistic ourselves while the NT of the world are off out and not buggering about on Mumsnet.

Given that it took 7 years (yes that's correct) of me pushing doctors and a team of specialists for my sons diagnosis I would say the numbers are much higher. Some people just give up trying to get the diagnosis because it's so hard to get.

Is there an equivalent online assessment tool for adult ADD or ADHD?

Is there an equivalent online assessment tool for adult ADD or ADHD

Have a look on the Additude website,

Please remember ALL online tests are only indicators of a possibility, they are not diagnostic assessments.

Very common in our family, I'm autistic, ds is & both my brother's dc are, I'm also convinced my mum is but she is 83 & not likely to get a diagnosis.

I was diagnosed nearly 2 years ago age 53, ds was 9 when he got his diagnosis.

I'm diagnosed and both my daughters are so i guess common in our house lol

20 years ago my ds would have been described as naughty. We are still waiting for his diagnosis now which has only come about since he fell apart. I kept hoping it was something else, something he would grow out of.
In his year group of 55 kids there are 3 asd kids including my ds. If they screened every child like they do for other things I imagine the rate would be more like 3 in 30.

I have a daughter who’s autistic (DIAGNOSED!!) Often I see a thread title and wonder if autism is involved and it often is. Bringing up an autistic child these days is so fucking hard and so isolating. Dealing with my NT two year old is just so easy in comparison so I don’t think I ever really post about my NT child much. I don’t talk to friends in real like as they don’t get it and it is too depressing so I come to mumsnet. I assume it’s the same for most parents a) the behaviour of an autistic child is more challenging than NT kids, b) no one in real life gets it.

@daisycottage completely agree. I was discussing this with DH the other day as our daughter is (DIAGNOSED) as autistic! There’s so much more change, stimulus, lack of routine these days. My mum was saying when she was a kid (50s) how they ate the same meals every week each night. That’d would probably be great for my daughter! As probably would be less traffic on the roads, no theme parks, the fact that lots of kids were expected to be quiet. Etc etc

My son had his dx at two years old. I've noticed that since AS has been included in the autism dx and terms like Neurodiverse have been used the Autism diagnosis has lost it's meaning. I'd like to see the diagnosis split again so those with more profound needs have a dx which communicates their difficulties accurately. Autism now seems to mean a few quirks or a difference to be celebrated rather than the disability it is.

Yes, I think more people are being diagnosed with Autism partially because those who are less impaired are now given the diagnosis where as previously Autism dx was given to the more profound. Just to be clear I'm not saying a dx isn't helpful to those not profound or they shouldn't be dx but that the dx for those more severely affected should be separate so that it's meaning is clear.

I really agree there. I now know what would have been called asperger girls. I am sure I was one as I am so similar to my daughter. I have now read a lot about it! (Rather obsessively...)

I am aware of a friend's relative who is profoundly affected and I do think its a very different thing for them. That's not at all the current thing to say though and I can't find the terminology to distinguish which is acceptable...

I have a professional diagnosis of (HF) autism / aspergers. I agree with @daisycottage completely that the modern world makes non-NT people more obvious. Right now all I can hear, constantly, is the hum of traffic and a plane every 5 minutes over my house. I'm bombarded constantly by emails with an expectation these are answered v swiftly. There's no time allowed for reflective answers any longer - my predecessors dealt with paper, the post service and had a far lower volume of work to complete in the same time (I often have to use the company archive so can see this for myself). I also grew up in a quiet rural area (no jobs!). Modern clothes/ synthetic fabrics are so uncomfortable.

I think it's not that we are more prevalent, albeit there is definitely an element of better diagnosis of women and girls, but that the modern environment is much less easily navigated by those with ASD.

@StupidNC

I have a professional diagnosis of (HF) autism / aspergers. I agree with *@daisycottage* completely that the modern world makes non-NT people more obvious. Right now all I can hear, constantly, is the hum of traffic and a plane every 5 minutes over my house. I'm bombarded constantly by emails with an expectation these are answered v swiftly. There's no time allowed for reflective answers any longer - my predecessors dealt with paper, the post service and had a far lower volume of work to complete in the same time (I often have to use the company archive so can see this for myself). I also grew up in a quiet rural area (no jobs!). Modern clothes/ synthetic fabrics are so uncomfortable.

I think it's not that we are more prevalent, albeit there is definitely an element of better diagnosis of women and girls, but that the modern environment is much less easily navigated by those with ASD.

Can I ask how do we make it better? How do I make things easier for my daughter? I work in an SEN school so I'm very aware of autism but my 11 year old is very high functioning and it's very new to us all. She wants to live the life she's always lived and worn her mask through but how do I make this easier for her or get her to find what she can cope with and what she can't? And can I say the thread on adults with autism the other day when everyone described how they felt was amazing for me to help maybe see how she feels. Most saying they feel like the only sober person in a room full of drunks was a massive eye opener for me. So that's why we are on mumsnet, for things like that to helps us help and understand our children.