Massive increase of children with autism

[TickingKey46]

I've noticed since the lock down there is a massive increase in children being assessed for autism and associated conditions. I mean massive.

On the school run parents are often discussing it it's become so routine. I'm really interested in why. Why are so many children being diagnosed with this condition?

The widening of the umbrella diagnosis has lead to an increase in autism diagnosis. Previously only the more complex/severe/ profound were given autism as a diagnosis now the diagnosis is incredibly vast and incompasis a huge range of presentation and conditions.

I feel the change from statements to ehcp's has also had a part to play. Send tribunals are at the highest they've ever been. Parent/ carers are better informed of their rights and are using those rights to advocate for their children. Previously many of the children with ehcp's wouldn't have had a look in under the old statementing process. Having a diagnosis/ seeking the assessment and the provisions can form part of the "evidence" that parents use to get a more lawful plan for their child.

The above ehcp process has also meant that there are more private organisations offering assessments, so they are easier to get in terms of not just on the NHS.

Schools aren't as structured as they used to be and have more sensory stimulating (noisier, more behaviour etc) so a child with sensory issues or a child who thrives on routine may be picked up earlier/ not cope as well in a modern school environment.

Yes that's what I was trying to say

Interesting point a pp made about FAS and drug use in both parents. Because of the stigma, this isn't well known but increasing awareness is a positive of the condition.

Otoh I also have a friend who loves a label (clearly a tad unhinged) and seemingly wants all her kids to have a SEN label. To the point where I'm wondering if this is a Munchausen by proxy case....

Labels are, by definition, limiting.
I have a Ds, 18, dx Aspergers. (Suspected AdHD but never assessed) Dx Dyslexia, Dyspraxia, Dysgraphia.
Dx Clinical Anxiety (so bad his panic attacks looks like Grand Mal seizures & 2 Consultants convinced of Epilepsy)
This is very dis-abling for him. Despite this he's had no help or support at all.

I have a Dd, 16. Dx Autism. Dx Dyslexia. Dx Clinical Anxiety. Fair amount of support at school (no ehcp as Scotland) but only in last 18m.

Their Father got his Dx last year, aged 59, after a breakdown. Their paternal Grandfather was the same, but no dx.

There isn't more 'of' it, but daily life is faster, & more pressured, than ever. It makes it harder to cope if you're ND.

What is DX?

There isn't a massive increase.. it's just that it's become more aware and recognised.. looking back at my school days in the 60s and 70s many of my peers would have been diagnosed with Autisim. When l was training to be an NNEB .. my project was Autism ( this was 1975) .. it was only just being talked about then and not often.. now thankfully we have come a long way.. same with mental health.. and a host of other medical conditions like menopause etc.. all used to be taboo subjects.

Yes, I agree. I too can look back to friends/family in the 70s and identify several who had the signs of autism or asd etc. And yes, at the time, we just thought they were different, but yes, they struggled with every day tasks, school work, etc, but were just classed as either disruptive or thick. When you know the symptoms and behavioural characteristics, it all starts to become obvious.

Diagnosis

There isn't more 'of' it, but daily life is faster, & more pressured, than ever. It makes it harder to cope if you're ND.

I think that’s particularly the case in schools, less structure, more group work, complex friendships, throw in social media which means your in contact potentially 24/7 and it’s easy to see why neurodivergent children would struggle more and so come to the attention of professionals more quickly. I think parents are more attuned to their kids and quicker to question schools if their kids are struggling.

My parents were very much “your teacher is the final authority” and would trust what they said regardless of how I was doing, you went to school and got on with it. Any behavioural issues were mine to sort, there wasn’t consideration that kids might just not cope in school.

My kids know I have their back and their schools know I will question anything I’m not confident with. Which means my kids have the support they need in school. That’s a definite shift from when I was at school in the 80s and 90s.

So true 👍

Nope, having read the post the wording the poster used was extremely clear and unambiguous, and the quite different meaning you've tried to attribute here wouldn't make any sense either. There is no context for that sentence that makes it not ridiculous.

COVID has has nothing to do with the increase in referrals. They were there before and they remain after.
Unless you work in CAMHS or have some
special knowledge then your wrong I’m afraid

Dx = Diagnosis

@HideTheCroissants what a lot of crap. Pretty much all the autistic children I know loved lockdown. You do know how hard school is for most ASD kids.

giggly

Actually I think you’re wrong. I think Covid isn’t the whole picture but has added to it. We were told that some children like ours became unwell during lockdown which is when their autism then came to light. Lack of routine, vulnerability, focus on online activity, anxiety, even more social isolation etc caused huge struggles.Eating disorders rose as did mental illness rose amongst teens, there is a connection between autism and eating disorders. Both my teens became very mentally unwell during lockdown and were then assessed and found to be autistic after, which informed treatment. We were told by professionals that they had seen this a lot.

You also had a big backlog after Covid as diagnoses stopped for a while.

I think better knowledge and diagnosis particularly amongst girls is probably the biggest reason for increase but to say Covid had nothing to do with the increase in referrals is incorrect.

@Santanderfall Sorry but I disagree - two members of my family were diagnosed as a result of the covid lockdowns amplifying symptoms which lead to referrals.

It really was quite an extreme pronouncement of symptoms, much more than changes regularly seen whenever school breaks for weekends/holidays.

Covid lockdowns were a traumatic level of disruption.

Tantamount to an earthquake vs tremor.

For instance, one child completely restricted food to about 4 items, couldn’t sleep properly at all, had enormous meltdowns, sensory difficulties through the roof. It was circus level performance.

By contrast, the same child now is disrupted at breaks but much more manageable.

Oh, and people do have to realise that many services closed to new referrals for 8 - 12 months over the covid era or restricted assessments to older children/adults only because the younger ones couldn’t social distance. That has led to an avalanche of referrals all at once and even greater waitlists so everyone is clumped together. And talking more about autism/the assessment process due to increased struggles.

With so many of us looking back across generations of our family and seeing traits of undiagnosed ND laced over time, I wonder how we can definitely know that autism is on the rise? Many of the older ND people are still alive and remain undiagnosed so we know that they stay unidentified and unrepresented in statistics throughout their lives. Unless you did detailed assessments of large random groups of the population then we will never know exactly how many people are ND and whether it is more common in younger generations.

I know it's probably easier to spot trends in the more severe cases and it seems that these cases are increasing, however could it be that just the number of severe cases are increasing and the number of underlying more moderate cases has remained stable?

never heard of Dysgraphia

Can I just say that most services did continue assessing throughout COVID.

Many services switched from ADOS to BOSA which is done by parent and child with observers behind two way mirror, and allows for social distancing. Parts of the assessment, eg developmental history, were switched to online discussions. A very few assessments were paused for a few weeks right at the beginning. Where delays occurred it was usually in children where a school observation was needed, but we did not down tools for a year and see no-one.

It means poor handwriting and is usually caused by fine motor skills difficulties, which is what most UK practitioners would describe instead of using the term dysgraphia (as fine motor issues impact more than just handwriting).

"And people do have to realise that many services closed to new referrals for 8 - 12 months over the covid era or restricted assessments to older children/adults only because the younger ones couldn’t social distance. That has led to an avalanche of referrals all at once and even greater waitlists so everyone is clumped together."

Not true about closing to new referrals. I don't even think we are allowed to do that by the NHS. Look at the stats and graphs I posted up thread. Referrals continued throughout COVID. There was a dip at first lockdown but not a closure.

Not true in our opinion (work for ND team in large city) as I have discussed elsewhere in the thread. COVID has a great deal to do with the quadrupling of referrals to our service, mostly because a lot of older kids developed severe anxiety and a lot of teeny ones didn't get socialised.

@giggly but that’s EXACTLY what I said! My autistic DS and DH loved lockdown and have found back to normal very hard. I think you have mistaken me for someone else

@giggly my post at 12:22 yesterday is clearly disagreeing with poster saying lockdown was the problem - my response was-

“I disagree with this …. my autistic DS and my (believed to be autistic) DH absolutely LOVED lockdown. They found having to be back “out in the world with people” VERY traumatic because the lockdown made them realise how great life is for them with no requirement to interact with people.”

Otoh I also have a friend who loves a label (clearly a tad unhinged) and seemingly wants all her kids to have a SEN label. To the point where I'm wondering if this is a Munchausen by proxy case....

This is definitely a thing, and I don’t know why it’s considered an offence to say so by MNHQ. So I guess I’ll get deleted but that’s silly because this actually affects the whole issue of how many people have it and should be discussed. I know parents like this, I have a family member like this (seeks multiple diagnoses for themself, doesn’t have kids), and I see it a lot in my creative industry where being autistic is most definitely boasted about and will actively get you work and cool points. Even if self-diagnosed. Much like id-ing as non-binary, overnight you’re in demand because you’re “under-represented” and “oppressed” and there are loads of grants and extra kudos and a premium placed on anything you do. I’m not exaggerating or being flippant, it’s literally true.

Oddly enough lots of people start identifying as autistic and make the most of these opportunities. They’re often brilliant at schmoozing and attending the opening of an envelope and doing endless appearances and talks. So sue me, I think some of them may not be autistic and are just good chancers in a very cutthroat industry. And the autistic people who the grants etc are meant for - or the autistic people who might actually find all that public performance more difficult or exhausting - are less likely to get a look-in.