To be confused by SEN, Autism, etc in children?

[Sallygoround631]

A sensitive topic, but I am curious, and hope that it isn't somehow improper to ask.
I admit to ignorance, because I don't have children, and I have not had much experience with children with SEN, Autism, allergies, etc.

What I want to know is, in your opinion, are there more kids with these issues now than, say, 40 years ago, when was a kid in the 80's? (when everything was put down to orange smarties and over activeness)

Was it simply less diagnosed or unknown, and put down to other, behavioural issues?
If so, then I am very glad we are no longer living with such ignorance.
But I am also curious to know if these cases have increased, or merely been there all along?

If they have increased, what are the reasons? Does anyone know?

I feel this is a tender topic and do not wish to cause upset. I am absolutely out of the loop and would love to hear about it.

Educate me!

@BlatantlyNameChanged

I have two feet, can make a tweeting noise, and if I board an aeroplane I can fly. It doesn't mean I'm a little bit of a bird or that I'm on the bird spectrum

ok this stumped me. im confused.

You're either a bird or you're not. You may share traits in common with a bird - number of feet, ability to make a bird noise, potential of flight - but that doesn't make you a bird. The same is true of autism. Lots of people may have traits that are common to autism but that doesn't make them "a little bit on the spectrum" or mean that "we're all a little bit autistic".

I see, thanks.

OP- I am going to assume you are asking genuinely.

Parents like me get defensive because people without direct experience of neurodiversity (meaning having a child or themselves with asd/adhd/other neurological diagnosis, not wider relatives), often assume that it is an excuse. They do not see that so many behaviours are linked to asd/adhd, and assume bad parenting.

If you look you will see it frequently in threads, where a poster will suggest that even if a child is neurodiverse they need to be taught not to do xyz, as though if normal parenting techniques were applied the kid would be ‘normal’

It is also often suggested that we are looking to ‘label’ (not diagnose) our kids with the implication that we are looking to seek a false justification for bad/weird behaviour.

Most people with some neurodiversity knowledge can look back and ‘diagnose’ (albeit speculatively) kids we went to school with 20/30/40/50 yrs ago who were just considered odd. Often it’s us. It’s always been there.

It’s not just autism, lots of medical diagnoses are more prevalent now, for example MS. It’s not that they are more prevalent, there will always have been children with autism/adhd (who were just labelled ‘naughty’) just as there will always have been people with MS. It’s just that there is more awareness of conditions now, and diagnostic methods have improved therefore more people are diagnosed.

that is fucked up, im sorry

It's a sad fact of life unfortunately. At my DCs old school I had parents complain that it was "unfair" DC had a TA when all children could benefit from having one. When they returned to school after covid, my other DC with SN/SEN was allowed to still go into the classroom at their normal time as the staggered start times along with all the other changes was simply one change too much, other parents complained this was unfair too. This DC didn't have a TA but did need classroom support, school refused to provide it and then tried to tell me how unfair it was for me to expect school funds to be spent on one child, that they wouldn't be able to justify to other parents why my child was getting extra help with specific skills and personal care, that it was unfair to expect school to have to deal with the complaints, and that I should do the support work at home instead - the basic message of "your child is an inconvenience". Child is now happier at another school and with an EHCP firmly in place to safeguard their support.

I think that it's partly diagnosis rates, but also autism is genetic and the internet has allowed people who might in the past have struggled socially and not found a partner, to find their 'tribe', find a partner and have children - and the children are therefore more likely to be autistic. Autism rates in children in Silicon Valley for example are far far higher than you would expect by chance.

If you're looking to read further about the history of neurodiversity OP, then I would really recommend the book Neurotribes. It's long but it's excellent.

@covidcloser

I suppose I get offended because I'm autistic and my entire existence has been just one big misunderstanding. It's hard to read the same misconceptions over and over again and not get a bit 'ffs' about it. It's a difficult life to live having people so opinionated about your diagnosis. People always jumping to the 'oh could they be ASD' etc on threads. It's tiring. I suppose that's it. I get offended because I'm tired of it. I'm exhausted thinking about it, reading about it, trying to explain it. It shouldn't be my default but it has become that because of the constant wrong assumptions. I have actually learned a lot on this thread about myself too. I should take a step back and try to explain when people don't know. So I will take that away from this and I'm sorry OP for jumping to the defence without stopping to think.

No need to apologise at all. I wish we were in a situation where you did not have to explain yourself to anyone at all. You should not have to live under the weight of those presumptions or opinions.

I have learned about how you feel, and that is worth something.

I am going through the assessment for adhd. Part of the assessment is looking at your childhood and did you have the same symptoms then.

I did but no one I knew had heard of ADHD in the 60s and 70s let alone know what the symptoms are.

I can see it in my mother and her siblings, in my grandfather and his siblings and even my great grandfather from how people described him. He died in 1920.

@Fromwhenceshecame

OP- I am going to assume you are asking genuinely.

Parents like me get defensive because people without direct experience of neurodiversity (meaning having a child or themselves with asd/adhd/other neurological diagnosis, not wider relatives), often assume that it is an excuse. They do not see that so many behaviours are linked to asd/adhd, and assume bad parenting.

If you look you will see it frequently in threads, where a poster will suggest that even if a child is neurodiverse they need to be taught not to do xyz, as though if normal parenting techniques were applied the kid would be ‘normal’

It is also often suggested that we are looking to ‘label’ (not diagnose) our kids with the implication that we are looking to seek a false justification for bad/weird behaviour.

Most people with some neurodiversity knowledge can look back and ‘diagnose’ (albeit speculatively) kids we went to school with 20/30/40/50 yrs ago who were just considered odd. Often it’s us. It’s always been there.

I can see your point, reminds me of a few thread I have seen in here on occasion, people mentioning kids screaming, etc.

As someone who doesn't have children, I could not presume bad parenting if my life depended on it.

I can appreciate discussion of such issues has been interpreted as 'making excuses'. That would wear you down.

The children with severe disabilities that I look after would not have survived years ago.

Some (a small proportion, in my opinion, but I don't have data on it) will be children that have been kept alive by advances in medicine - dc born very prematurely, and dc born with some medical conditions that would have meant the did not survive some decades ago
I was just coming to add this. I know several children, including DS who simply wouldn't have been alive past birth even a few decades ago. Tbh we'd have been encouraged to abort had we had a prenatal diagnosis and we'd have struggled for life saving intervention at birth. But at least there's medical advances to do it now. Other conditions will decrease die to prenatal screening - which N European country and zero births of children with Downs Syndrome?

It's not just SEN type conditions either.

I was diagnosed with a genetic condition in my late 20s, only a few years ago. Turned out it went back 3 generations - totally missed by doctors, including specialists in that area who really should have spotted it. It killed my grandparent, and he was never diagnosed in his lifetime.

How did I get diagnosed in the end I hear you ask? Google. I had a suspicion something linked all my symptoms. I went googling. Found a genetic condition online and had an "aha" moment. Got referral from GP to specialist. Specialist confirmed my suspicions.

I've gone from thinking we just had some odd coincidences as a family, to knowing it's a condition, and being able to speak to hundreds of others with the same condition online. I've never knowingly met someone with my condition outside my family, so it's great to be able to compare notes.

Better access to information is probably a significant contributor to increased levels of diagnosis too.

Probably a combination of factors, diagnosis threshold is different, better understanding and diagnosis too, but research indicates overall prevalence is increased, various theories but older parents especially older fathers are one area being investigated. Seen lots of other theories but they are no more than that. My dd is autistic, we were 20's but to be honest her father is probably on the spectrum by today's diagnosis criteria so genetics probably play a huge part

It was incredibly difficult to get diagnosis especially for girls - my daughter was over 16 & I knew, as did her school. & her private speech therapist (sore point!) &we are talking the 90's , that it was something else. Many books on ASD written by specialists in ASD note that children went through long periods of misdiagnosis (for instance, epilepsy & ADHD both of these meant children were given drugs they didn't need. or that they had mental health issue (or their parents did ie Mums - they either had Munchausen by proxi or neglectful or both) . To get educational support parents would have to go through hoops & claim for learning disabilities on educational statements because asd for children with average intelligence was simply not understood. the earlier diagnostic criteria were based more on male presentation than female, & females do present differently
I

If you look you will see it frequently in threads, where a poster will suggest that even if a child is neurodiverse they need to be taught not to do xyz, as though if normal parenting techniques were applied the kid would be ‘normal’

So true.

I tried to explain earlier today that sending an autistic child to school when they had been awake all night would not teach them to sleep. Natural consequences of being tired would not work. The majority didn't get it.

OP sent the child in, for her own reasons which was fine but the sheer volume of misunderstanding in that one thread was shocking.

@Sallygoround631

So the further we go back in time, the worse the kids would have been treated

Not necessarily. Before compulsory schooling and the rise of large scale institutions, people with LD (who were then termed "naturals" or "natural fools" (not carrying the same pejorative weight as the same word today)) were often cared for by a person paid by the parish, if they had no family members to do so.
It's a common fallacy that we are so much more advanced in all respects than people of the past and that there is a linear progression where everything get better and better.

Surely it's not better for your children for more people to be educated about their needs? Surely it will lead to a more tolerant world?
I think it's great if others want to learn and don't find it offensive at all.

@DeathByWalkies

It's not just SEN type conditions either.

I was diagnosed with a genetic condition in my late 20s, only a few years ago. Turned out it went back 3 generations - totally missed by doctors, including specialists in that area who really should have spotted it. It killed my grandparent, and he was never diagnosed in his lifetime.

How did I get diagnosed in the end I hear you ask? Google. I had a suspicion something linked all my symptoms. I went googling. Found a genetic condition online and had an "aha" moment. Got referral from GP to specialist. Specialist confirmed my suspicions.

I've gone from thinking we just had some odd coincidences as a family, to knowing it's a condition, and being able to speak to hundreds of others with the same condition online. I've never knowingly met someone with my condition outside my family, so it's great to be able to compare notes.

Better access to information is probably a significant contributor to increased levels of diagnosis too.

I'd never thought about this, what an interesting perspective. We are now more able to research ourselves and join the dots thanks to global communication.

I have history with the negative side of this - used to suffer health anxiety when younger and used the web to confirm my devastating suspicions, which where always wrong, thank god!

Im glad to hear the positive side of this.

[quote entropynow]@Sallygoround631

So the further we go back in time, the worse the kids would have been treated

Not necessarily. Before compulsory schooling and the rise of large scale institutions, people with LD (who were then termed "naturals" or "natural fools" (not carrying the same pejorative weight as the same word today)) were often cared for by a person paid by the parish, if they had no family members to do so.
It's a common fallacy that we are so much more advanced in all respects than people of the past and that there is a linear progression where everything get better and better.[/quote]
now that has me thinking.
we do seem to go by a presumption that things only ever get better. I wonder why..

Surely it's not better for your children for more people to be educated about their needs? Surely it will lead to a more tolerant world?

My personal opinion is that actually creating a more tolerant world will lead to a more tolerant world and the responsibility to do so does not rest with my children. They're human beings, not learning tools.

@BlatantlyNameChanged

Surely it's not better for your children for more people to be educated about their needs? Surely it will lead to a more tolerant world?

My personal opinion is that actually creating a more tolerant world will lead to a more tolerant world and the responsibility to do so does not rest with my children. They're human beings, not learning tools.

So true, and we are all personally responsible regarding our interest to learn. And tolerance would only enable that to develop faster.

You need to remember that Asperger's syndrome and higher functioning types of autism were not really diagnosed until the work of Hans Asperger was studied and translated in the late 1980s/early 1990s.

You also need to be aware that prior to the 1970 "Education of the Handicapped" Act that children with learning disabilities in the UK were not entitled to education by Local Authority education departments. Prior to its implementation children with learning disabilities were classified as "unsuitable for education at school" and were under the purview of mental health services either in institutions or at home

@BlatantlyNameChanged

that is fucked up, im sorry

It's a sad fact of life unfortunately. At my DCs old school I had parents complain that it was "unfair" DC had a TA when all children could benefit from having one. When they returned to school after covid, my other DC with SN/SEN was allowed to still go into the classroom at their normal time as the staggered start times along with all the other changes was simply one change too much, other parents complained this was unfair too. This DC didn't have a TA but did need classroom support, school refused to provide it and then tried to tell me how unfair it was for me to expect school funds to be spent on one child, that they wouldn't be able to justify to other parents why my child was getting extra help with specific skills and personal care, that it was unfair to expect school to have to deal with the complaints, and that I should do the support work at home instead - the basic message of "your child is an inconvenience". Child is now happier at another school and with an EHCP firmly in place to safeguard their support.

it would seem we are going backwards. I used to think things were improving, I can't get my head around it. I feel like I grew up in a world (gen x) that was steadily plodding forward with progressive ideas and acceptance. I do feel that there is a sort of stealth-entitlement going on around us, and I wonder why. I wonder, even, if I am complicit in that. It does no harm to ask oneself such questions.

Thanks.

My son has sen, as a baby he was seriously poorly developed septis which attacked all his organs including causing mild brain damage. If he was born in the 1980s he wouldn't be alive. Alot of babies born poorly or prem are surviving due to better medical care and not just diagnosis as a sickly baby so of cause more children are going to have a diagnosis. Saying that it taken 11 years for a autism diagnosis. He has had severe speech delay. Ongoing health issues, problem with flexibility in his hands plus many more things sensitive wise I've battled shouted cried and I was told it just because he had a rough start he just delayed he'll catch up even it being my parenting, as I was accused of helicopter parenting him apparently not realising I'd spent so long fighting for him I picked up on signals without him needing to verbalise it so step in to support him or remove him if I sense a melt down coming on. Sen is a incredible big umbrella term for many areas of additional needs and whilst progress had been made due to covid we've gone back at least 10 to 15 years from where we'd got to.

Friend's daughter is severe end of spectrum and would have been sent to an asylum.

More diagnosed at the milder end of the spectrum now. In the 70's were deemed odd/geek's etc.

@AliceLivesHere

Friend's daughter is severe end of spectrum and would have been sent to an asylum.

More diagnosed at the milder end of the spectrum now. In the 70's were deemed odd/geek's etc.

Just while we are here to gain knowledge...

The 'spectrum' doesn't have ends. It's not a mild to severe line.