What % of kids have asd?

[Chilto]

So many friends kids have recently been diagnosed with asd and adhd. I am considering seeking diagnosis for my 2 kids and myself as we have some traits and find social situations difficult. Kids have occasional meltdowns but only at home. However a few years ago I would not have considered it as we are all ‘managing’ but maybe not thriving. Does any one have any up to date numbers of percentages with asd conditions?

The diagnosis made a huge difference for my child at age 9. At age 6 I probably would have felt the same a little. In time you will see how important it is for them. There will also be no room to blame you for certain behaviour - because trust me - the school will absolutely include people who will try blame you for any difficulty your chikd has. You can throw in GPs and potentially some pediatricians into that mix.

I think rates genuinely have risen, but I also think there are changes in schooling and wider culture that make it harder for children who might be borderline coping.

Many children now are not only expected to do a full school day but also to attend childcare, and this can be 10 hours a day in a noisy, busy environment.

Children who struggle to attend are being forced to, by both the school system and also because their parents may be out of the house working. When I was at school lots of kids didn't bother attending and nothing was followed up, and many families had a parent at home who was quite happy to allow their child not to go in. So it was much easier for autistic kids to just slip out if the system.

Kids who have severe behaviour problems are also no longer allowed to slip out of the system, so they are in school making it a stressful environment for other children.

Add this altogether and you have a very stressful school environment plus a stressful childcare/wrap around environment, with no alternative available, so autistic children who previously got by are no longer able to cope.

Mines 13 now and i agree it definitely does make a difference but it’s a real fight still, it’s not a case of getting the diagnosis and then the support becoming available. Mine was really struggling in school, having meltdowns getting fixed term exclusions etc and when we got the diagnosis I though we would then get the support but we still got turned down for ehcp assessment and had to go to tribunal. To cut a long story short he’s now age 13 and is in a specialist autism school that he couldn’t go to if he wasn’t autistic so a diagnosis is 100% worth it for us. My query was more to thr person who said an adult diagnosis had changed her life, as I can’t imagine there being masses (or any) support available for autistic adults particularly if high functioning

One issue is that the diagnostic criteria to meet overlaps with several other conditions, and as autism is becoming more well known with more resources in promoting awareness & support and less stigmatised, the more that's going to be considered before other conditions both by families and professionals. Add on that what can help an autistic child can also aid children with those conditions, if not as well as care for their condition, as well as many children who are just not handling the stress of the current education system, and the spike and contrast between what is experienced and stats isn't surprising.

Academic estimates are 1-2% of the population are autistic.

Same estimates put FASD at the same to twice as common, but we'd never know it just looking at SEN stats or parent conversations, because it is heavily stigmatised. The only time I've seen it discussed is with Children in Care. FASD has both heavy overlap in symptoms and a comorbidity of FASD is ASD. It has far fewer resources and ability to be diagnosed with only a couple centres in the whole country for those diagnosed after infancy, and there is still a lot of myths about it like requiring the 'sentinel facial features' to be truly FASD, even though that presentation makes up only 10-15% of those affected. Many of the things for ASD help those with FASD, though social education and things like memory tend to need very different care for the best support.

OCD, clinical anxiety, and trauma response dysregulation in children also has significant overlap, and so do some learning and language disorders. Stress can also present with some of the symptoms like sensory overwhelm and sensory seeking, a strong drive for routines, and social difficulties.

Another issue is how data is gathered on the numbers. All of the reporting varies a lot.

Some schools only report those who have an official diagnosis, others will report any child in the very long screening and diagnostic process - which in some areas, including my own, it is strongly recommended any sibling of a child who gets a diagnosis also goes through the screening, and others report any child who is getting Social and Emotional support recommended for ASD children as ASD.

Same with wider research - some is based on official diagnosis with a buffer for a portion of the waiting list and undiagnosed, some track and include self-reporting, some is based on extended same classroom observations and family discussions to see how many children would meet the diagnostic criteria which tends to be a strong standard when looking at child diagnoses though it obviously as issues when we're looking at wider populations (and obviously for things like FASD, there is far more grouping by communities than we'd see for something like ASD, in areas with a lot of alcohol issues, FASD rates have been reported as high as 7% of children in the area schools).

Mine would have been diagnosed with Asperger’s.

Shes now in burnout. Can’t speak to some people, too overwhelmed to do anything. Cant attend school. She got 9 high grade GCSE.

Id say it fluctuates in severity.

I think a lot of it is more awareness, especially about the different presentation in girls. Plus the diagnostic criteria include the requirement that everyday functioning is impaired. Lots of autistic people can function pretty well in the right environment. But schools today are stressful, noisy and regimented. Social media is stressful and means that DC have less time to recover from their day. Life for teenagers now is so different from when I was a teenager in the 80s. I think that change in environment may well be partly responsible for more people meeting the criteria.

IME of early years it's around a third of the cohort, at least. I don't think 'neurodiverse' is really that uncommon. It's getting less common to see 'neurotypical' children. As awareness of the differences people have increases and coding type skills and STEM & ICT continue to be prized I suspect the pendelum will swing the other way.

1 in 9 seems right to me - I’ve got two autistic dc. In the 1980s, neither mine nor DH’s DMs worked when we were pre school age, my DM was at home throughout primary so we never did any after school, any holiday clubs.

we expect a huge amount of endurance in out of the house childcare and activities from babies onwards these days, set against increasingly fragmented communities/families.

i too think we need a society wide re think - one of my dc loathed every single bit of childcare (due to not feeling really safe in any setting) and the other one did so appallingly badly in it that it was one never ending disaster.

https://worldpopulationreview.com/country-rankings/autism-rates-by-country

@ArseInTheCoOpWindow My Dd got immediate support from a psychologist. She was diagnosed 18 months ago and still sees her every fortnight.

Really? Through the NHS? How old is she please?

It would be interesting to know how accurate that is. I wonder if the criteria is the same in all countries too. I can't see that 3rd would countries would bother testing the poor who didn't get a chance to go to school. Also some parts of autism may not show up so well depending on the surroundings. If you are sensitive to sound, it may not be an issue if you look after sheep on a hillside compared to being in the middle of a noisy megacity.

Not sure what you’re on about - I’ve been in the workplace for 30 years - always with computers and email (and very shortly into work, the internet) and we certainly sat and learned in a classroom - even with computers sometimes!

She was diagnosed at 16. Will be 18 in July.

We live in Sheffield. It seems to be unique in that the ND unit is an annexe of the Children’s Hospital rather then being in the clutches of CAMHS. It has nothing to do with CAMHS which is probably why it’s so good. The whole department ( and is quite big) is staffed by ND psychologists and psychiatrists.

All children get an allocated specialist psychologist. This psychologist also offers family support. They see them as long as they need to. The ND nurses are allowed to prescribe melatonin. It should be what other ND services are modelled on. Theres even an on call psychologist who we’ve used more than once.

They’ve been amazing. We’ve bought the pyschologist flowers and all sorts. I don’t know how we’d have coped without them. They’ve supported us and Dd through severe burnout. I absolutely love them💕💕💕

What difference does it make?

Not all ND are into coding or computers though. Mine hates them.

I get what you're saying but I was just making the point, like when Silicone Valley became a massive thing, people started to respect the skills set that most of the employees had. Same with specialist Conservatoire and Art or Drama schools. It's not to say that people with ND don't go into other areas.

As well as historical
underdiagnosis, especially in girls/women and people of colour, there’s another thing really masking the true rates.

Basically the numbers of people who are ASD and people with ADHD have been thought to be pretty different- ADHD rates being much higher even before recent increases. Up to about ten times higher, depending what rates you look at.

However people looking at the overlap between ASD people, ADHD people are finding many more people have both than was previously thought.

Until about ten years ago it was thought you were one or the other. For the last ten years or so it has been possible to be diagnosed with both but it was thought to be rare.

Rates of how many ASD people also have ADHD and vice versa according to different studies and practitioners.

But the general ballpark it is increasingly looking like someone is more likely to be/have both than just one or the other. So that shows something is up with the supposed rates of both as thought of in the past.

And that would suggest the ASD/ADHD rates are likely more similar to one another than previously thought (rather than there being ten times more people with ADHD than ASD people).

So there are three sets of people here:
People diagnosed with ADHD whose ADHD has been masking their autism.
ASD people whose autism has been masking their ADHD.
People not diagnosed with either because both conditions co-mask each other.

I decided to get dd diagnosed after her teachers referred her because I was always getting in trouble at school for things that I just thought were normal. Because I wasn’t diagnosed I had no awareness and the teachers could just assume I was naughty. I wanted to ensure dd doesn’t face that