SEN/PDA help

[Littlemisschatterbox2]

tiktok algorithm is showing me lots of SEN specifically PDA videos. When did this first get recognised as something that people can struggle with? Is it just better recognition and understanding we now have? Or is it just because there seems to be a need to label everyone. I am stuck in two minds are children been labelled to quickly then unwanted behaviour is accepted as part their condition or is genuinely that more people have SEN.

there absolutely no judgement here at all just mere curiosity. I fully appreciate that some have these challenges and I am full of admiration for parents and those who struggle.

Or do you just think there are more because of your feed?

SEN is far far wider than PDA, so it is difficult to follow your question.

@TeenToTwenties absolutely I know there is I suppose because I watched a couple of the videos I see more on PDA and it’s is one I haven’t heard of much of until recently

PDA isn't recognised everywhere yet. It's a specific branch of autism. Autism already has demand avoidant behaviour, so be diagnosed PDA needs it to be really impacting.

We aren't quick to label children, the diagnostic process for autism takes many years. Took my son 3-4 years. He is PDA, and the diagnostic team did not want to include it, but one of his advocates fought to get it put on his diagnosis. Because PDA autistics need vastly different techniques to support them.

It is absolutely not used as an excuse for bad behaviour, and I and his school work tirelessly to support him to become an adult who can deal with the PDA behaviours.

PDA autistics live in a constant state of fight or flight. Imagine how exhausting that must be. Everyday demands, such as toileting can be difficult for people with PDA. But they aren't unteachable, if fact with the right atmosphere my child has gone from being incredibly violent on a regular basis, to very chill. We rarely have meltdowns anymore, because he's being helped to learn how to cope with them.

He is excelling in school and has been nominated for an award for his progress at school. When just 8 years ago, I didnt know if he would be able to access any schooling at all.

TLDR: PDA is a very useful diagnosis because of the difference in support needs from other autistics. And with the right support, they can and do excel at whatever they want to do!

But what about SEN children that are beautifully behaved all the time? My autistic daughter is one such child. We didn’t get her diagnosis to excuse any bad behaviour. We got her diagnosis so that she could understand why she felt different to her peers and be more comfortable in her skin - protecting her mental health.

To answer your question, I think diagnosis rates are increasing because society is becoming more aware of the different presentations of neurodiversity. My daughter would not have been diagnosed if she grew up in my generation as autism in girls was just not understood well enough.

@Littlemisschatterbox2 from my (limited) understanding, PDA is a very specific sub set of autism, or a specific "place" on the spectrum, depending on how it is being discussed.

As more research is done, the more they're able to learn about the conditions and dig deeper I guess?

Also, the more you click, the more the algorithm will show you. Maybe try varying your searches/clicking on different things. It can kind of sneak up on you and then all of a sudden you realise that particular topic is basically all you're seeing and it feels like it's everywhere, be it Sen, anti vaccine, celebrity sex scandals or what have you.

This idea that we are quick to label children with diagnoses is absolutely laughable to any families actually experiencing this. To receive a diagnosis of autism, let alone PDA, is an extremely lengthy process which requires an incredible amount of evidence and perseverance on behalf of parents/school.

I think as a society we are much more aware of neurodiversity and are able to identify it much better.

My son has Autism, I'm 99% sure my husband also has autism but undiagnosed, things have moved on so much in just the last 32 years since he was born.

My son does not have PDA but can still occasionally get very stressed and upset when I ask him to do something. There is a huge difference between bad behaviour and demand avoidance. Now of course my son is only 4 so he does occasionally do things that he knows he shouldn't (unwanted behaviour) and I respond to that the same as I would my other son who is neurotypical. As a parent of a child with Autism I can promise you that it is really clear to me the difference between when my child is behaving badly and when he is struggling to cope. When he is struggling it is not a conscious decision on his part, it is a very sudden response that he can't help. PDA is not unwanted behaviour.

I spend a huge deal of time worrying about my sons future, wondering if he will ever be able to have a conversation with me, will he be bullied in school, if he will ever live independently, if he will ever be able to work, if he will ever have friends/ a relationship/ children, what will happen when I die? Absolutely nobody is "labelling" their children just to excuse poor behavior. My child's social, communication and sensory difficulties are very obvious to those who know him.

I say this with kindness but I think perhaps if you've not experienced neurodiversity within your family, you don't realise the huge impact it can have on everything, I certainly didn't have a clue before my son was born.

It’s not always a long process to diagnosis. My friend thought her daughter had autism and got a private diagnosis a few months ago after waiting a couple of months for an appointment. The daughter is 5 and my friend was saying how easy it was to do.

I would delete the word “label” and replace with “describe”. Its helpful to “describe PDA type behaviour so that people understand it and can deal with it better.

I have tried to word it as best I can I have likely not done a good job. Sorry for any offence caused to anyone.

by label quickly I mean you see endless (well I do) of if you have x,y,z you could be autistic/adhd etc etc. Certain traits I have could labelled as adhd but I have never had that diagnosed nor do I think it’s the case. But as more traits etc are understood is that why more are getting labelled. Whether that be an actual diagnosis (I understand this can take years) or just undiagnosed and believe to be the case. ( that’s not me saying parents are claiming something that isn’t the case, but just no official diagnosis )

i need to stop watching them as I know that’s why I am seeing more and more.

I think it's both more common and used as an excuse for bad behaviour. I have 3 autistic children. My girl is the easy to overlook quiet well behaved academically able type. She very much struggles in school and received no support as there were other more challenging children who took the minimal support available first. I'm also autistic and was just like my dd, I was not diagnosed as a child because like her I was academically able and well behaved. I received my diagnosis as an adult once my children were diagnosed. So for her to be recognised as autistic I do believe huge progress has been made in identifying SEN compared to previous generations.

But then I also have a PDA child. The type of child who sucks all the support from children like my dd when in a classroom setting as their unmet needs are so very challenging and disruptive to the other students school priorities TAs for him. He couldn't cope in school and I pulled him out as he was being traumatised and it was unfair on the other students. Because he is PDA I have connected with many other PDA families for support etc and I must admit some I do wonder if they genuinely are PDA or if the parents are using it as an excuse. PDA is a crippling g anxiety response to all demands including demands like getting ready for things the child really really wants to do, in fact with my boy the more he wants to do something the worse his anxiety becomes and he cannot cope. The impact on his life is significant. He literally cannot engage in normal or fun activities. Yet I've met other children who's parents say they are PDA who are fully able to cope with demands for things they want to do. They also have this attitude they can do as they please because they are autistic. My son will act out then be wracked with guilt and be self harming because he's so ashamed of the effect on others. He doesn't want to do as he pleases he just wants to fit in.

BUT you never know what goes on for children really. I've met them a few times and observed what I have observed and while I may think what I've said here I would never say it or feel such a child should be denied support. I know what it's like to have people judging me and thinking all my son's issues are due to shit parenting so I refuse to make another family feel that way, and would never vote or sign petitions etc to deny these children access to support.

Then my third child is the more traditional autistic. They type people think of when you say autistic. Delayed. Significant issues with speech and communication. Male. Obvious Repetitive behaviours and rigid extreme interests etc etc. Even so getting a diagnosis for him will be years on a waiting list because there simply isn't the services to cope with the volume of SEN and autistic kids.

Not labels. Diagnoses.

When did this first get recognised as something that people can struggle with?
Assuming you mean PDA, early 00s, approaching 25 years ago.

Is it just better recognition and understanding we now have?
Yes, largely.

Or is it just because there seems to be a need to label everyone
Sigh. Not labels, diagnoses. Second sigh, the percentage of people diagnosed as neurodivergent is still extremely small in the UK.

I am stuck in two minds are children been labelled to quickly then unwanted behaviour is accepted as part their condition or is genuinely that more people have SEN
Its neither. There were children with challenging behaviour way before PDA was known about and autism was only reserved for those with severe care needs. But medium-high functioning autistics with PDA and/or LDs and/or other medical conditions were likely not in mainstream school, probably not even in society less than 60 years ago. If they were they were likely viewed as all sorts of abhorrent things.

All the SEN circles I move in with autistic DS have parents who are absolutely shit hot on behaviour management. Far more so than neurotypical peers. It may look different than mainstream behaviour management, but nobody is sitting around letting their kids batter other kids at soft play and blaming it on the autism, no matter what mumsnet will have you believe, There is no ‘accepting unwanted behaviour’, there is never switching off to it.

There absolutely no judgement here at all just mere curiosity
Then maybe try and be a bit less offensive with your choice of words before you post about a topic that is so sensitive and difficult to navigate for a lot of parents.

@VivaVivaa I thought about posting this for a while and reworded it many times. I have done my best to word it sensitively sorry if you have been affected about how it worded that really was never my intention

There is just a lot more neurodiversity around than there used to be, which would be expected considering the genetic link and growing population.

People recognise traits or behaviours that are linked to the huge umbrella that is autism, so will naturally draw conclusions.

I think there are people who will jump to ‘diagnosis’ PDA with any type of defiant behaviour wether or not the child is autistic, but when you have seen a child suffer from the debilitating effects of genuine PDA, then you recognise that it’s far more than just not wanting to follow instructions.

PDA can be an absolutely debilitating condition to live with. It's a profile on the autism spectrum - acknowledging that all autism comes with some level of demand avoidance, due to sensory needs, rigid routines etc - but miles beyond the 'normal' demand avoidance of other autistic people.

TikTok however is a hellsite full of attention seekers and it's not where I'd start my quest for neuropsychological education.

From my personal perspective as a pda parent, it's 100% a diagnosis not 'behaviour' - so incredibly different from my neuro-typical child. It's also clearly hereditary, so nothing new. However all the older family members living very successful lives had different childhoods with plenty of outdoor play, no school until age 7. Very free choices for the first few years they were at school with smaller class sizes and more music, art, and relaxing moments. My son didn't last through reception in UK before being off-rolled by his independent school and I'm shocked to become an "elective" (no choice here) home educator. I expect my son, who is now thriving, to be very successful as is his father and other older non diagnosed pda family. Our education system has stressed and squeezed out diverse minds that don't exactly fit the education targets at exactly the right moments. We are doing brilliant people an absolute injustice.

Having personal and professional experiences of autistic children without a PDA profile vs autistic children with a PDA profile, I think the 'label' is really important.

This is probably a bit outing but I was desperate to have one of my DC sent to a certain specialist school who openly admitted they couldn't cater for PDA profile children due to their educational approach. I knew my young child showed some demand avoidance but it's not diagnosed in the UK so I pressed ahead with pursuing the placement. All was well for a couple of terms (very common for children with PDA), until it was not. It caused very extreme problems. Now I know that I should never have sent DC to that school. In fairness, they tried really hard with DC but fundamentally they were not the right setting.

I also think there's not enough material on autistic children with severe learning disabilities with a PDA profile. This does happen but these families are left floundering in the dark as all the strategies for PDAers are geared towards children with average-high cognitive abilities and ALL the strategies for children with learning disabilities are based on Skinnerism behavioural approaches.

it's a diagnosis, not a label. Do you talk about people having been diagnosed with e.g. diabetes or cancer as 'labelled' with diabetes'? If not, why is not? What's different? Why it PDA a label and not a diagnosis? I guess you have no first hand experience in this area hence the hugely ignorant and somewhat judged post.

Also to get an Asd or related label, ahem diagnosis, you have to wait for years. Im my LA, the current waiting list is 6 years long. Can you please let me know what is 'quick' about that? It's a similar picture across the country.

@Outchy please take note of my earlier post …
I thought about posting this for a while and reworded it many times. I have done my best to word it sensitively sorry if you have been affected about how it worded that really was never my intention

How is anyone meant to learn understand more if those with experience take things as a personal attack which this was not. In answer to your question I thought ‘diagnosis’ more emotive word and ‘label’ more sensitive. Fortunately PP have seen past this provided helpful information.

hope things get easier for you