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?

Last year our year 7 intake (mainstream secondary but with a good reputation for SEN provision) was 20% SEN (including social, emotional, and mental health) and another 10-15% additional needs (mostly poor literacy/numeracy but with no diagnosis)

We questioned how many of them would be diagnosed with 'issues' nowadays where as they were just brought up without boundaries

Parenting does not cause autism, ADHD, dyslexia, dyspraxia, or any other SN. It is not down to lack of boundaries.

Then there are the remainder who she described as poorly behaved, sometimes little parental control who inform the school the child is autistic etc...but when asked about diagnosis, they are self diagnosed by parents and not by a doctor

Then they won't be getting any SEN support in school because even with a diagnosis it can be difficult to get the right support in place. Some of these children who are "self-diagnosed" will be on the assessment pathway and simply don't have the bit of paper that confirms a diagnosis, waiting lists are long and by long I mean years in some cases during which you have an undiagnosed, unsupported child whose difficulties don't vanish just because they haven't got that but of paper yet.

If you had any idea of what it's like to have a child with SN, or to have SN yourself, any notion about the assessment process and any clue about having to fight for support then your realise no one goes through it for the fun of it or because they need a handy excuse for shoddy parenting. People who are faking it tend to be weeded out early on in the process and even when you get through all of the assessments there is a minimum threshold for diagnosis so you're still not guaranteed to get one.

The problem @Clymene is people like yourself who won't tolerate open discussion and thought and want to shut it down

No, people like you and your ignorance of children with SN and disabilities are the problem.

And regarding the naughty kids in school who went onto be fine as adults.........there's a good chance that like me they're faking it till they make it.

I struggled all the way through school, the doctor suggested I was ' hyperactive'. My mum tried controlling my behaviour through diet, and her slipper.

I was aware I never fit in, always felt odd. I was diagnosed as an adult when my son's nurse kindly asked if I had a diagnosis...........the diagnosis itself means nothing to me but I do hope if God forbid something happened to my partner it would open access to support from ss. Because bills etc I cannot manage.

Similar with my sis, she was the opposite to me as in she wouldn't speak in public. And she got really badly bullied.........we were so angry with my mum after she died and we found a box full of letters from educational psychologists and school who'd obviously picked up on something. We knew she'd turned away support but didn't realise how bad things were,........again, my sis is Autistic.

There was a lot of stigma back then and people were a lot less likely to seek out they do now, people thought of disabled people very differently, they thought of institutions and a life of no hope. They couldn't see how a fully, functioning child could also have a life affecting disability.

@Brogley ...Pointless debate really as some people don't want to have it. I have not questioned anything about people who have children diagnosed with such conditions. What I am surprised about is parents informing the school that their children has a condition, ie autism which is totally self diagnosed. Surely as a orient if your child was displaying concerning symptoms or behaviour you would be anxious to have a diagnosis and also access any additional support ASAP which as you point out, is difficult to access and impossible to access if not properly diagnosed.

DS has SN (diagnosed by specialists not by me) and received some questionable support at school. According to the school he is the first child they have ever had with ASD/ADHD and are learning... I don't know anyone in real life with a child with ASD so I come on here for advice. I imagine it's the same for many of parents.
A family member has many issues he has and I suspect would also have a diagnosis if they were at school now.

All 3 of my dc have ASD...I googled something and it led me to the Sen board..and I stayed :)

There's nothing wrong with the OP's post. But the issue with these threads is that it doesn't take long before someone like @coffeeeandtv pops up spouting ignorant bullshit

Always happens.

What winds me up is the posts that say a chunk of them are self diagnosed to excuse poor parenting. I've never encountered this despite having contact with a lot of SN parents, I've encountered plenty who have started assessment and are fighting their way through it but not the other. The system just isn't set up to dole out support to everyone who asks. It has to be bloody fought for.

And regarding the naughty kids in school who went onto be fine as adults.........there's a good chance that like me they're faking it till they make it

Yep, I'm seeing a large increase of adults who have recently been diagnosed or going through diagnosis. I'm talking right into their 60s. I've also spoken to woman with kids who have ASD who strongly suspect they're also autistic and it makes sense but they've grown to adapt to the world so won't be pursuing a diagnosis.

@coffeeeandtv "We questioned how many of them would be diagnosed with 'issues' nowadays where as they were just brought up without boundaries."

and

" I have family experience how difficult it is for parents to get a diagnosis and just how little help there is out there,"

So either parents can't get diagnoses when their children need one or children are being diagnosed when there's nothing wrong with them except for a bit of decent parenting. Which is it? 

And I can assure you @Normalmumandwife that schools don't put any support in place for children of parents who have been 'self diagnosed'. Children receive extra support based on need, not because their parents have filled in an online 'is my kid autistic' quiz.

Surely as a orient if your child was displaying concerning symptoms or behaviour you would be anxious to have a diagnosis and also access any additional support ASAP

Based on experience, here is how it frequently goes when you know your child is different and you're trying to get a diagnosis and access additional support ASAP.

1. Tell the HV that something isn't quite right, your 2yo is different to the other 2yo's you know. Get informed by HV that your child is just "a live wire" and will settle down with age

1. Tell your GP that something isn't quite right with your 2.5yo, show GP a list of your concerns. GP tells you that all children develop at their own rate and that you should "relax more" before reassuring you that anxiety is very common in first time mothers and you should speak to the HV

1. Speak to HV again, get dismissed again

1. Child starts school, problems escalate. Tell school that you have concerns about child's development and that these have increased since school starts. School tell you that Reception year is often tricky, especially for children who are on the immature side that your child will settle down with age

1. Problems continue to escalate, raise it again with school and get told that it myst be a "home problem" because aside from some "spirited behaviour" they aren't having any problems

1. Contact school nursing team who take concerns seriously, go into school and pick up on several developmental concerns. Referral made to paediatrics

1. Paediatrics do a preliminary examination and state there are problems with your child's development however they can't go any further as your child is now six years old which is where their service ends

1. Referral made to CAHMS whi respond three months later that due to service pressure they are not accepting any new patients under the age of 7

1. Wait until child is 7, ask for another referral, go through several more months of being stinewalled because child is just "spirited", "lively", "immature", etc

10. Referral finally done, CAMHS appointment arrives and assessment process takes an entire school year as the various observations and appointments are so spaced out. Assessment process is a shambles of lost paperwork, inaccurate recording, and constant judgement. Parenting course has to be completed before assessments are completed, course is very patronising and includes lessons such as "feed your child three meals a day", "no hitting", and "routines are useful"

11. Receive results of assessment which concludes that your child has some traits of autism but not enough but be of concern and a more likely diagnosis is maternal FII related to guilt about being a working mother

12. Ask for second opinion and make formal complaint about CAMHS handling of the assessments

13. Second opinion service fast tracks the appointments, diagnosis of autism made by consultant child psychiatrist who also writes a letter in support of the complaint as child's record shows a diagnosis should have been made by CAMHS

14. School dithering and dally over providing support as according to them "child has coped without it so far" despite overwhelming evidence that child is not coping. Get told that the support measures recommended by the consultant are mere suggestions and do not have to be implemented as they need to target their budget at the children who are struggling the most

15. Change schools

16. Lots of back and forth with new school to get right support in place but they are at least trying and after a few months of trial and error, between us and SENCO we get the right support set up

17. SENCO leaves, new SENCO removes support as "child is doing well so does not need it any more". Things fall to shit. SENCO reinstated support. Child does well. SENCO removes support as clearly no longer needed. Repeat.

18. Make application for EHCP which takes months and means more assessments and appointments. EHCP finally awarded and support is in a place a mere nine years from when you first raised your concerns when your child was aged 2

Then we got to do it all again for DS2 who thankfully, went through the system faster but still took three and a half years from first concerns to diagnosis and still had the initial dismissals of "he's just stubborn" and "he'll grow out of it".

What winds me up is the posts that say a chunk of them are self diagnosed to excuse poor parenting. I've never encountered this despite having contact with a lot of SN parents

Same. And I see a lot of SN parents judged by parents of NT children and suspected of fabricating their child's diagnosis purely because the parents of NT children don't understand and don't bother to educate themselves about it.

If I had a pound for every time I have heard the following phrases then I would be a millionaire:

• "But he looks so normal!", that's because we make him keep his human-suit on in public so that he doesn't frighten the normies

• "I bet hes good with computers and maths though, isn't he?", he once snuck a screwdriver out of the toolbox and dismantled his dad's work laptop during the night so yeah, I guess you could say he knows computers inside and out

• "What's his superpower? All autistic kids get a superpower", he can fly but again we ask him not to do it in public as the normies freak out about it

• "There's nothing wrong with him that some rules wouldn't fix", he has the most rigid thinking of anyone I ever met and everything must be done just so, our life is one long series of rules

• "Send him to stay with me, I'll soon have him sorted out", my sweet summer child... you wouldn't last a day

• "They never had any of this back in my day", that's because disabled people were hidden away back in your day

• "Hes just quirky...", quirky is deliberately wearing odd socks or using book pages to decorate yyour downstairs loo. Walking into a lake because you were following a duck, not quirky. Refusing to shit because you don't like the sensation to the point that you end up at hospital, not quirky. Drinking shampoo because it smells nice, not quirky. Stop with the quirky thing

Why does it matter to you? Your user name doesn't suggest that you have started this thread in good faith.

Yes, people will gravitate to where they can talk to people with common experiences.

I also work in a school doing admissions. We have literally never had a parent turn up with a self diagnosed child and expect support! We have the reverse. People so battered and let down they hide their childs diagnosed conditions until the school place is accepted as they know some schools will fight against taking a child with SEN on.

DS has severe autism, adhd, dyspraxia, and very poor motor skills.
Diagnosis was a long and stressful journey, DH and I were devastated when his nursery teacher picked it up when he was 3.
We're well used to Ds and his idiosyncratic ways but to others he may look rude, naughty, bratty etc. It's just the way he is though.

Actually that's something I noticed too. I can't imagine how difficult it must be to cope if you have one with SEN but many people have multiple. I guess people just cope the best they can and hopefully they have a good support system. I have a colleague whose child has DS and a friend whose DS dyspraxia but apart from that nothing in our circle apart from some just being brats!!

I can't imagine how difficult it must be to cope if you have one with SEN but many people have multiple

Genetic factors are involved. The numbers given to me by DS consultant were that everyone has roughly a 1 in 100 chance of having an autistic child. If you already have an autistic child then it is a 1 in 25 chance that any subsequent children will be autistic. There are some identified genes associated with autism, there are others not yet identified but it is now possible to check for the ones they are aware of and DS had genetic testing as part of his assessments. Before the testing went ahead we were told that if they did find one of the associated genes then we would have a 1 in 4 chance of any future children being autistic. Are DC will be aware when they grow up and possibly want families of their own that they will have an increased chance of having an autistic child.

I post on another parenting board, and have known many of the posters for years, since they were trying to get pregnant with their teenagers. I've noticed that a large percentage of them have at least one child with SEN, myself included. I've sometimes wondered to myself why this is so noticeable. I've concluded the following:

SEN are much better diagnosed now, so it will feel as though more DC have SEN. In reality I can think of several children in my own class who, in hindsight, must have had SEN, but never got a diagnosis or help.

Also, the squeaky wheel gets the grease. Your child is far more likely to be diagnosed in the first place if you are fairly educated in the matter, articulate in describing signs and pushy enough to navigate the complex, broken system that is there to 'help'. I.e. The type of parent who posts extensively in relevant forums asking for experiences/recommendations/what to say to the GP/Ed Psych etc. So they are more visible online.

There's also the massive fact that the 85% of parents whose DC have no SEN don't need to post online asking for help, or to mention it in posts given it's relevant to their DC's behaviour. So the posters who were around on the other site 15 years ago, whose DC have no SEN, are far less likely to have stuck around now the DC are older and they are busy with life. The parents struggling to deal with getting help for their 14 year old are far more likely to need to chat, ask for advice and so on with a group who understands their life. Most old posters drifted away after their DC started school. So the level of SEN stands out more.

That's my reckoning anyway. I imagine the same is true of MN.

@Clymene *
*
And I can assure you @Normalmumandwife that schools don't put any support in place for children of parents who have been 'self diagnosed'.

I'm not aware that I said or suggested they did. That wasn't the point being made and I'm fully aware that children that do have a statement struggle to get support.

I was just surprised at parents making the school aware their child had a condition but self diagnosed. And no my friend wasn't referring to children going through assessment either.

DD has dyspraxia, was right on the borderline for inattentive ADHD and is now increasingly showing signs of dyslexia.

Looking at myself I have exactly the same issues she has and am quite clearly screamingly dyspraxic and have a dyslexia diagnosis that I got to age 40 assuming it was normal to not retain or process any information from reading - I masked it as I've got a very high IQ (it's mensa level if I could be arsed). I only found out when I went back to uni last year and was screened and then saw an ed psych... You just struggled, were labelled as thick or clumsy and shit at pe back in the 1980s.

My son has recently been diagnosed with autism and global development delay. He's also non-verbal and in the process of sorting out a statement for him for school. Yes, I do come here for support but I've name changed quite a bit as well. I like the fact I can ask questions where people don't know who I am. There's not a whole lot of support for families with additional needs. And out of my friends with kids, only one has any clue of what I'm going through. The rest don't have kids with Sen so have zero idea of what I go through, with the worry, the unknown, the uncertainty of his future. I feel like I'm winging it most days.

I also had a very big eye opener just how many families there are with additional needs when I started going to NAS meetups.

And for context, in my son's class, there are two diagnosed (one being my son) and 4 on the assessment pathway.

OP, it’s fair enough to have your question because the way SEN is identified, and the picture nationally, is really interesting, and we can assume it doesn’t particularly accurately reflect ‘actual’ SEN for various reasons. Provision for SEN children in schools and the attitude/approach of local authorities is also patchy to put it mildly; being identified with SEN can be subject to numerous, imprecise processes such as the quality of teaching in the school, the attitude of the SENCo, transition between primary and secondary - when in my experience half the kids identified with SEN seem to be absolutely fine and you also discover the same number who are obviously NOT fine, etc etc. It’s worth remembering that the ‘official’ diagnostic process outlined by a PP is the minority of cases on a school’s SEN list, it’s largely made up of kids who the school has concerns about. Having an EHCP is quite unusual on my schools SEN register.

It’s a very complex topic. I have asked myself your question too re MN and I think it’s likely to be a biased sample cos parents with SEN children are more likely to seek support, but I also don’t think it should be controversial to point out that the MN demographic is more likely to be one that has the resources to seek an ‘official’ diagnosis. Not because anyone has ‘bought’ one unfairly but because the whole process is so long that well- resourced families (in time, money, emotional availablity) are more likely to pursue it.

I don't see anything at all offensive in the OP, who even predicts the reason:

do you think its representative of general population or do mums of DC with SN use this forum more for whatever reason?

And yes, this board has a specific forum for special needs, which will bring many parents who have little support, over here. And then they post on other branches too.

Morning, everyone. As there seem to be a few posters about here who aren't familiar with Mumsnet and our SEN boards, it might be a good opportunity to share the page about our This Is My Child campaign. It's a few years old now but a lot of the information about myths etc, is still just as relevant.

1 in 10 people have dyslexia, 1 in 100 Autism and that's from various different disability statistics. Statistic hasn't changed over time, just more people get a diagnosis now and aren't just written off as rude or stupid etc etc etc