Autism rate unbelievable

[OneShyLimeBird]

I don’t mean to sound insensitive, but the rate of autism has increased so much that I am doubting my own high functioning diagnosis, and the diagnoses of many others. The meaning of autism has expanded so much that virtually every other child has it. It used to be so rare, I’m not saying your child doesn’t have needs but you used to have to meet a much higher threshold to be diagnosed with autism that it’s now lost all meaning. It can’t all be autism.

Sorry. I have reread it and understand now.

As others have said, there is more acceptance and awareness of ND and therefore you would expect people who would have not been diagnosed and be able to access support 30 plus years ago to now be. I’m sure this is the main reason for the increase in those officially diagnosed, and can only be a positive thing.

I do however wonder if there are other reasons for the increase.

One of the things that we were asked about early on in the pathway to diagnosis for my DC is whether she was born prior to 37 weeks (she was) as this indicates a higher likelyhood of ASD. Given that babies born prematurely are far more likely to survive, compared to 30 years ago, it follows that you would expect to see an increase in children with ASD.

There is also believed to be a higher prevalence of ASD in children who have an older father, which is also imagine is more likely now, compared to the previous generation.

My dc all have autoimmune conditions as well , and bowel issues. I do think there’s some kind of link. I definitely do NOT think it’s the mmr but the association between bowel issues and autism alongside that I feel maybe there was some truth in those things being connected it’s just that dr decided to blame mmr and he was wrong ! (My dc were all clearly autistic before they had their mmr later than usual )

This is quite a powerful post. I agree with this

What if we hadn’t appealed? You’re suggesting that people get PIP purely on the basis of a diagnosis. There will be lots of autism sufferers who don’t need personal care and won’t meet the eligibility requirements for PIP.

I agree that the system of awarding PIP needs to be overhauled.
71% of people who appeal get a decision in their favour.

But most people don't go to an appeal. The DWP relies on this of course.

I know exactly how PIP works, and how you have to show an inability to meet the descriptors. I've claimed it myself (won on appeal) and assisted three other people to get it.

And of course you don't just write a diagnosis and expect to be awarded. But that goes for any diagnosis.

You have to fill in the form properly.

I have autisms only diagnosed as an adult. Although I tried to get a diagnosis as a teenager it was not successful. I am so disappointed in the psychologist I saw. It would have made my life so different. It has just become more apparent as I got older.

I might not appear to have traits in public because I am careful about only doing things I can manage. I can cope at work because I know the structure of the interactions I will have and with lots of rest.

Outside is a different story altogether. I hate having autism.

I agree that there definitely does appear to be a huge increase in the diagnosis of autism in recent years. I would be greatly interested in a study of whether the rates of autism have actually increased due to environmental or other reasons, whether it was previously being underdiagnosed or whether it is now being over diagnosed and other factors are causing what appears to be autism.

I was diagnosed with atypical asperger's syndrome when i was 10, a few years before they got rid of that diagnosis. I don't like referring to myself as autistic, it doesn't feel like i should be calling myself autistic when previously it was only the most severe cases which were diagnosed as such. By removing the previously different diagnoses, it feels like they've invalidated my existence.

I hate it too , I feel as if it’s ruined my life but a big part if that is down to the way it was ‘managed’ by my parents . I’ve made it my mission to get my dc diagnosed early and to have early intervention/ therapies etc and to get them each an EHCP as I want them to have a better life with autism than I’ve had

I’m a retired professional. Part of a diagnostic team. Autism in my opinion is not over diagnosed, in the case of girls and women, it is very much under diagnosed. Part of the above statement is fact, the other is opinion.
As with the Swedish universities and others claiming overly diagnosed; it’s an opinion, not a set in stone fact.
I would also like to point out we don’t just chuck a dx in every direction and see where it lands, it takes a few months to make a dx. I ask about background, how the child functions at home/school/social situations. I observe the child in different settings.
Frankly, I find the negation of the experience of those with autism offensive.

I use the term Aspergers because thats what a sibling of mine has as a diagnosis. Its perfectly valid and applicable.

I feel like we're at a point where we understand autistic people really quite well, but we still don't really understand very much at all about autism.

The idea of a spectrum made a lot of intuitive sense to me. The current narrative that it's an "on/off" condition, ie you have it or you don't, doesn't resonate within my family, some of whom are diagnosed autistic (well, Asperger's because we're of that generation), some who present very similarly but have never felt the need to seek a diagnosis, and some who are unsure whether to pursue a potential diagnosis or not. I'm acutely aware, however, that there are many others out there who absolutely don't have that luxury of "I wonder whether it's worth pursuing a diagnosis" - they 100% need that diagnosis and support. These feel like two very distinct categories to me.

The nature of diagnosis is that you have to meet certain thresholds across different criteria. By definition, there are some people who just tip into the category of "autistic", and those with a number of autistic traits who don't quite meet the threshold. And that threshold has been decided at some point, and may or may not be entirely accurate.

I don't think it is being over diagnosed. My kids are both autistic and have really struggled hugely in school, so I think about this a lot.

100 years ago the things that cause my children the most distress just didn't exist. Artificial scents, strip lighting, car fumes, sirens, are all a complete nightmare for people with sensory sensitivities. There is much less playing out then there was even when I was a child, so kids don't the proprioceptive input they need, they come straight from home, and spend loads of time on screens. The meals people ate were less processed. School is more free flowing and unpredictable than it was. And so on.

I also really hate the demonisation of parents for screen time/ convenience food in a society where for most people both parents need to work to provide food and housing or their kids. It's systemic, parents are set up to fail to a large extent.

When mine were in upper primary I would encourage them to go to the local park with friends. We live on a street next to a very small and safe park, you don't even have to cross a road to get there. Literally none of their friends parents would let them go. It was absurd that 10 or 11 year olds were all cooped up on minecraft rather than outside. And now, they socialise online, they don't want to go out.

Can I ask do you think that professional awareness of autism has improved recently? When my DS was diagnosed there was practically no wider awareness of autism and I didn’t start pushing for a diagnosis until DS was 6 (although I did know that his behaviours weren’t normal from when he was a baby). They gave him an “unofficial diagnosis” at 7, and I had to fight for four years to finally receive an official diagnosis when he was 11. I discovered subsequently that autism had been queried three times in his medical records by various health professionals before he was three years old.

These days anyone would look at DS and immediately know he has autism (he stims - hand flaps, exaggerated blinking and ticks, always looks down, talks like an old professor). It makes me angry still that I had to battle for a diagnosis that was so obvious, and it still took years of appointments with paediatricians, Ed Psychs, SALT and OTs. My friend’s child was diagnosed after a single zoom appointment during lockdown.

No one is negating the experiences of those with autism. You can have an opinion that there is overdiagnosis without negating other diagnoses, surely you understand that?

And yes its an opinion, just like a clinician or clinical teams diagnosis is an opinion, Autism like many conditions cant be tested for or proved in the same sense that diabetes can, so clinicial variance will always be part of the picture, plus whatever belief system or starting point you come from with regard to Children's behaviours or backgrounds.

You got to laugh at the posts that are being deleted because they called out that neurodiversity labels are being abused by some MN users. Must have hit a sore spot ..

It’s nothing new sadly. Parent blame when children have SEN is a massive issue and so many parents desperate begging for support get labelled with FII and subjected to CP investigations

No, mumsnet just recognise them for the trolly shit that they are.

Sorry but you’re wrong. Autism can be seen on a brain scan, it lights up differently. I wish having one was standard in order to get a diagnoses, but it is too expensive to implement

My DD gets the usual you don't look or act autistic especially as she has lots of friends and enjoys being a typical teenage girl but spend any time properly observing her and you'll notice her social interactions are not as multi facetted or complex as her peers and she clear doesn't understand some nuances.
Just because she appears not to be autistic doesn't mean she isn't or doesn't meet the criteria.

The brain is very complex we've barely scratched the surface in understanding it. The fact that there lots of families I know with both "higher" functioning and non verbal autistic (some needing residential care) family members shows to me that there has to be a genetic element and depending on the mix of genes you get different extremes of presentation.

It's also interesting that both Autism and ADHD are linked and running in families together again there must a underlying genetic reason.

I'm sure as well in the future we'll find more than one thing going on as well that have similar affects on the brain.

@Hairycooter ND is an umbrella term for various conditions that are linked to differences in the brain and how it processes information and reacts to various stimuli.

Like cancer can mean various presentations and severity.

Thats interesting because Ive been told by a number of practitioners and many many posts on here that its not possible. I have long said that in time there iwll of course be a 'test' for it which is much more able to to determine and count things in or out because its about the neurology of the brain so why wouldnt it be visible if we make the right test or examination

And you talk of the expense, but people are generally waiting around 3 years at the moment for an assessment, it would be much more cost effective to have MRIs to cut all of that out, also cutting out a range of clinician time as well.

Anyway my point still stands, those brain scans are not part of the diagnostic process in any case and so the variation will still be part of it.

Sorry but you’re wrong. Autism can be seen on a brain scan, it lights up differently. I wish having one was standard in order to get a diagnoses, but it is too expensive to implement

I find this very hard to believe.