How many kids actually have SEN?

[justasking14]

Morning all, not trying to be offensive with this just genuinely interested.
A big proportion of people on MN seem to have DC with autism or SN of some kind, its mentioned in their posts & replies. Have other people noticed this too & do you think its representative of general population or do mums of DC with SN use this forum more for whatever reason?

What I wonder is why, if you have such a vast experience the main two things you had to contribute to an SEN thread were sugar and bad parenting?

That’s very kind of you to say purpleboy. Honestly, every parent I’ve met with a child / children with SEN works just as hard as I do (if not harder) in extremely challenging circumstances, often even more challenging than ours. They are hands down the best parents I know, so it’s extra galling to see people being suspicious of their parenting. Even when they say “oh it’s not all parents of ND kids” - which ones is it though? Is it me? My friend A who can’t get a diagnosis because her son also has glue ear so they won’t diagnose until they are sure it’s not his hearing (two years waiting so far)? Or friend B whose child is 5 and she and her family are constantly covered in bruises because of his extreme violence, while their other son is placid and calm?

I often think that the parents and kids who have it the worst are those where it’s not clear there’s a problem until they are at primary or even secondary school. They are the ones who are treated like they are terrible parents, forced on to parenting courses, find out that the schools are slagging them off in internal emails etc.

At least for us there was never a question that there was an issue - children don’t just regress as significantly as mine and pay no attention to people and not understand that words are a thing unless there’s something going on.

And the real kicker is that professionals instantly see me as a good parent. I’m white, middle class, well spoken, degree educated. The assumption is that I’m a good parent from the off. That is not the case for many people.

And the work I’ve had to put in to secure help for them, fight on their behalf for education (I had to write a 9,000 word document this weekend for their tribunals just to highlight all of the salient pieces of evidence I’ve uncovered) and so on is not feasible for a lot of parents, especially those who have disabilities/ learning difficulties / literacy issues themselves. What happens to their children? It keeps me up at night to be honest.

Like I've said, a thousand times, for most children the process is absolutely necessary, however, on occasions, there are children that get diagnosed without needing it, without a proper look

Without a "proper look" at what exactly? That's a contradiction in terms anyway since any assessment process is literally that. Why don't you say what you really mean? Because what you mean is "take a look to see if it's shit parenting rather than a neurodevelopmental disorder."
What do you class as a child who gets diagnosed without needing it? Come on, share your non-existent expertise with us.Because spending time in a special needs school doesn't make you any kind of expert. Unfortunately people who work in special needs can be just as ignorant as everyone else. For example, my brother has autism, and his special needs teacher once challenged his diagnosis because in her words "he's too friendly and sociable to have autism."

I know of many children who have been diagnosed in under 12 months with no real look into their home life.

I don’t believe you 2007millie.

Yeah, not how it works. People don't get diagnosed with autism for being a bit different or quirky, not for being a loner either. People seem to have no idea what the diagnostic threshold is and i find it really disrespectful to people who have and are disabled by their autism.

To be fair to the poster who said they believe they would have a diagnosis if they were a child today, it’s hard to put across in a couple of sentences why you think that might be. I’m one of those parents who came to a very gradual realisation that I’m probably autistic since having an autistic child/children. A very very slow realisation that horrified me initially. But one day I realised how it explains everything about myself and my life, quite honestly.

2007Millie you claim to work in an SEN school. Children who attend an SEN school will have an EHCP and therefore will have been through a very thorough assessment process. Were you not aware of this?

Anyone not understanding what parents if autistic children go through should read @Brogley post on the very first page which sums up completely what is experienced. I sat nodding my head in agreement.

I was lucky my son was diagnosed aged 7 with the paediatrician saying “clearly autistic, absolutely no doubt whatsoever about the diagnosis”.

I was also fortunate that the LEA having refused him a Statement of SEN then backtracked furiously once they had a piece of paper with “ASD” on it.

I was so cross because his needs had not changed...all that was different was an official diagnosis.

Aged 17 he now attends a sixth form college for students with moderate learning disabilities.

Boundaries...ha....he never ever understood them. He has his own boundaries and coping strategies though and you certainly wouldn’t find him out on the street causing problems for society.

I know of many children who have been diagnosed in under 12 months with no real look into their home life.

But how do you know?

One of my twins was diagnosed at his first appointment with the neurodevelopmental paediatrician. It took one hour total although I’m sure she knew quite soon into that session.

That doesn’t mean that was the sum total of his assessment though. He’d been under the neonatal team until 14 months old. He was referred to paeds after off the scale worrying scores in two separate assessments by health visitors. He’d had a SALT assessment already, and an OT assessment. So it’s not as simple as all that.

DT2 took two appointments as they wanted to rule out other things first - but he was under four consultants, had endless tests, an MRI of his brain etc first.

@nevertrustaninja

Absolutely aware. I don't believe a single pupil at any SEN school is there without needing to be; places are like gold dust to get in one.

To be fair to the poster who said they believe they would have a diagnosis if they were a child today, it’s hard to put across in a couple of sentences why you think that might be.

I understand that, but to be honest I'm more interested in what "form of condition" they think they might have been diagnosed with rather than why. It's just i really hate that phrase, simply because I've encountered several people using it as a code of sorts for autism. And it's like well if you just mean autism then say autism for fucks sake. I know, I'm a pedant, and more than a little cranky thanks to the muppet up above.

2007Millie - Could you explain where you are coming across children who you feel have been incorrectly diagnosed and in what role you have observed their assessment process?

• And the real kicker is that professionals instantly see me as a good parent. I’m white, middle class, well spoken, degree educated. The assumption is that I’m a good parent from the off. That is not the case for many people.

And the work I’ve had to put in to secure help for them, fight on their behalf for education (I had to write a 9,000 word document this weekend for their tribunals just to highlight all of the salient pieces of evidence I’ve uncovered) and so on is not feasible for a lot of parents, especially those who have disabilities/ learning difficulties / literacy issues themselves. What happens to their children? It keeps me up at night to be honest.*

Yes to both of these points. I used to get so paranoid about what me and DS where both wearing at appointments for fear of being judged a bad parent. I still get paranoid when professionals have to come into the home that they will judge cleanliness or whatever.

It really worries me how many children must slip through the net simply because they parents aren’t able to (for a whole host of reasons and I am certainly not judging the parents) fight the system to get what is needed. I knew it was difficult but until trying to navigate the system I never realised how difficult (and until having Ds I worked in education including special education)

@SinkGirl your absolutely right. The judgement is there from the moment they set eyes on you. I see it all the time, disapproving looks, eye rolls etc when a child is behaving in a way that is deemed "inappropriate" there is no tolerance or understanding as to why the child might be behaving in that way.
I have a sister with LD never diagnosed as she is now nearly 60 but it's pretty apparent once you start speaking to her, her daughter (my niece) is even worse and unfortunately her daughter (great niece) who is 9 is pretty much non verbal and still in nappies. When we go out together the looks and comments we get from people is astounding. But I'm a bolshy bitch when I need to be so I enjoy educating people on their narrow minded views. But it's easy for me to do that because I'm not faced with it day in and day out like my sister and niece are. I can only imagine how hard and draining it is if that is your constant life.
The only place I see them truly accepted is at great nieces school, the staff there are just wonderful and the parents and the kindest, most tolerant and patient parents I've ever met.

And if a child has a diagnosis in under 12 months it's more likely that e professional,s are absolutely certain of it rather than a wait and see approach when a child's presentation is more subtle

2007Millie - So you know many and multiple children misdiagnosed but the process is probably correct 99% of the time. Yet you focus on the many/multiple 1% who just needed to not drink sugar and have no boundaries?
Can you not see how insensitive it is to focus on misdiagnosis on a thread asking why MN has so many parents with a child with SEN?
The implication is MN has disproportionally attracted parents who parent badly with misdiagnosed children.

millie sounds perilously close to the type of poster who thinks the GP diagnosed autism because the parents want DLA. I'm reminded of an old poster who presented themselves as an expert on autism in the classroom but eventually said they were the school secretary. I can't remember enough to search for their posts.

www.theguardian.com/world/2019/sep/02/hong-kong-protests-calls-grow-to-give-citizens-right-to-live-and-work-in-uk

Accidental post, sorry.

I'm reminded of an old poster who presented themselves as an expert on autism in the classroom but eventually said they were the school secretary.

That would definitely make more sense. I've never read such a pile of crap for a long time.

@SinkGirl Absolutely spit on about the waiting to be judged and anyway prepared for battle. So, so many parents do not have the resources to fight through the endless opinions. 9000 word document? I hope it works like a hammer.

2007Millie knows more than Doctors and Scientists. I've heard it all now

You clearly all think the system is perfect and assessments are completed flawlessly every single time. Unfortunately, this isn't the case.

Forgive us for not believing you when you think "your experience of children who you know have had Coco Pops for breakfast" is more valid than years of research with controls by actual scientists.

You clearly all think the system is perfect and assessments are completed flawlessly every single time. Unfortunately, this isn't the case

So you're just going to keep insisting you're right without answering any of our questions?
Like what qualifies you to decide which child does and doesn't need a diagnosis? Do you have any relevant medical qualifications?
Or how about how you can decide which child really "has problems" and which child is just badly parented? Tell me, what is the source of your magical powers?

I don't think anyone thinks the system i s perfect far from it but ssessment,s for autism etc are generally not just one person's opin ion diagnosis,s are generally given after months in my sons case lot of casees years of assessments