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?

@Brogley Never was a truer word spoken (or written)

dd2 first raised concerns when she started playgroup at 2, given 'social communication disorder' and dyslexia diagnoses at 7 - no support provided, intermittently out of school as unable to cope, finally diagnosed with ASD at 15.

dd3 after 6 years of struggling and on and off school refusal some bright spark at school has finally said 'we think she has ASD traits'. She's also 15.

You really don't get support in school because your mum says you have SEN!

It's a combination of things. Professionals are better at understanding and diagnosing SEN. It's no longer considered shameful to have a child with SEN so more people talk about it. Parents who have children with SEN are more likely to use forums like mumsnet for support. Premature/sick babies are surviving who wouldn't have before and they are more likely to have disabilities. Adults with SEN are more likely to have children of their own and some SEN can be genetic. Also it depends what you mean by SEN. Many people when they think of SEN assume you mean severe SEN. So when people talk about their children who have SEN there will be posters who assume they are talking about non verbal older children who are in wheelchairs full time when the poster is actually talking about a child with hypermobility or a stutter.

Many people when they think of SEN assume you mean severe SEN. So when people talk about their children who have SEN there will be posters who assume they are talking about non verbal older children who are in wheelchairs full time when the poster is actually talking about a child with hypermobility or a stutter.

Yeah, that's what comes from the terms SEN and SN being used interchangeably. I wonder how many people on MN know they aren't the same thing?

It's really annoying on here when people post about a situation and then refer to "my SEN DC." Like what the fuck does that tell me about their issues and the relevance (or lack of) to the situation? Just say what their actual issues are. And yes I'm aware not all children with SEN or SN have an exact diagnosis, but you can at least briefly explain their difficulties. Plus i really hate when people write "my SEN/ASD child." It's so reductive and a little dehumanizing. But i know I'm a pedant and someone will no doubt say i need to relax and that how people phrase things doesn't really matter when you know what they mean. Yeah, it does matter though.

@x2boys I'm glad you raised the point of learning disabilities. Two of my dc have ASD in a fairly similar way. The massive difference between them is that one is also cognitively impaired and as such, goes to a special school. In our County, all the SS are either Moderate Learning Disability or Severe LD schools.

What I find frustrating is that our County doesn't formally diagnose LD or test IQ. I have been driven half mad by people telling me how clever my son must be because he has ASD. Or surprised he can talk because he has ASD. Or surprised he goes to a SS as MS accommodate dc with ASD. I just describe him as disabled now as I can't bear to hear people's mindless appraisal of my son and their expectation that he will become an IT expert or frankly ever have a job, when quite clearly, that is nonsense.

I also do not give people the chance to tell me that I 'have to be ambitious for ds' as who knows what hidden potential he has. I am ambitious for him ffs - I would like him to be successfully able to manage his own toileting by the time he is 18 and be able to control his anger so he doesn't keep breaking expensive technology (we are 3 iPad screens smashed since lockdown began).

Only on MN do I hear about scores of badly behaved kids getting diagnoses handed out like sweeties to disguise how badly parented they are. And yet, apparently, it really does happen!

I actually think the numbers of children with undiagnosed SEN are vast. You only have to read parents on MN discussing their children who are “quirky”, “anxious”, “have sensory issues”, and “struggle at school” but DEFINITELY aren’t autistic, to realise that for every child with a diagnosis, there are one or two others whose parents don’t want to label them and refuse to get them assessed.

(Just last week I had a family member say to me “Oh I just don’t agree with labelling children” like allowing them to struggle through life is infinitely better than a dreaded label. I should also mention that my son is autistic. FFS).

So if you think developmental disabilities are over diagnosed, in reality I think you ain’t seen nothing yet.

I would love to know where these places it is so easy to get a diagnosis are - I think a lot of people would move there rather than have the fight to just get a diagnosis (let alone any required support)

Real life support is very hard to come by for parents of children with SEN, so I completely understand why they would look for it here (my 12 year old is diagnosed with ASD)

Indeed @Sirzy. We have been on the waiting list for 15 months. A waiting list that is still, supposedly, nine months long.

So creeping is the implication that parents are inventing labels in order to excuse badly behaved children that I've started to notice people putting (diagnosed) in brackets before or after naming their child's condition. "DS has (diagnosed) ADHD" or "DS has autism (diagnosed)".

Like other pps have said there is a huge range of conditions that result in a child having SEN.

DDs condition is a genetic one arising from problems with brain development in the womb affecting learning and development. If you met her you would probably think that she was just cripplingly shy.

I really have never come across any "self-diagnosed" children and as other pps have said they certainly would not get any additional support. We have been lucky with DDs school, which is a small rural primary, but even within that small school there are at least 4 or 5 children with EHCPs. AS others have said there is a startling degree of ignorance about what will result in a child having a SEN diagnosis.

If DD had been born, even 20 or 30 years ago she would probably have just been called a slow learner and very shy, although her immediate family would definitely not call her shy!

The other thing I would add is that I work with secondary school students who need additional support. Those kids who are disruptive and have chaotic home lives are often those who don't have a diagnosis.

This is sadly because getting a diagnosis for a child requires organisation, patience, time, a certain level of communicative ability and basic literacy skills. The kids who come to school with shoes that don't fit, who don't have anyone who is stable enough to meet their needs or set boundaries, are unlikely to get a diagnosis primarily because it is such an involved, complicated and lengthy process and their parent isn't able to cope.

Fortunately, the school I work in gives help where it is needed, rather than on the basis of an EHCP. I work with kids who don't get enough sleep at night, who never have a pencil case or calculator and who need to wash/need clean uniform. It makes me realise that students like my son who has autism and a loving family who are always there to support him, are the lucky ones.

When I joined mn close to 8yrs I didn't have a child with asd,adhd. Dc recieved dg 2 years ago. Mn is huge and diverse so you might notice it more if you pay mind to it. In real life all my friends dc except 1 appear or have been diagnosed with something neurological during the course of our friendship.

That's the thing @MrsBobDylan people think they know what autism is with all the autism awareness campaigns etc but the media,rarely focus,s on people with autism and moderate or severe learning disabilities even a paediatric nurse told me son just have a special talent 🙄

@Brogley thank you for that incredibly rude reply, however, I know of multiple children who were diagnosed with autism due to behavioural issues when they were fed nothing but sugar and junk food with no routine and were told 'we aren't really sure if they're autistic, but we will diagnose them in case you need help in the future'

Oh yes we love collecting labels. So far we've seven. One more and I qualify for my free goat. Our consultant told us 30 years ago DS would have been in a home he sleeps less than 2 hours a night and can't be left alone yet some people still think we're faking it because he looks normal. I tell them it's the way we part his hair.

I'm rude? You're the one making untrue statement about children with SN.

Autism is not caused by junk food, sugar, or lack of boundaries. It is a neurodevelopmental condition, if you are autistic you are born autistic. It not something that happens to you because of how you are parented.

The diagnostic process is both long as thorough with several gatekeepers to pass before you even get to a clinician, by the time you do get to that stage there are clear indicators of what the diagnosis will be. They don't hand out a diagnosis just in case you need it or just because your child has some behavioural issues that might be autism.

Your ignorance of what autism is and how it is diagnosed is astounding. You really ought to go and read up on some facts before posting inaccuracies.

Oh don't talk crap Millie they don't diagnose autism for fun or if they are not sure ,and why was @Brogley,s comment deleted but @2007Millie very ignorant comments not?

I've messaged @MNHQ to ask that same question especially as they quoted This Is My Child earlier in the thread by let ableist comments like that stand.

2007Millie - ha ha ha. As if.
i hope you reported the people giving these 'just in case' diagnosis to their professional bodies for malpractice.

I know of multiple children who were diagnosed with autism due to behavioural issues when they were fed nothing but sugar and junk food with no routine and were told 'we aren't really sure if they're autistic, but we will diagnose them in case you need help in the future'

What a load of bollocks diagnosis just doesnt happen like that.

Christ, it's insulting some of the shit people come out with.

@2007millie.

I know of multiple children who were diagnosed with autism due to behavioural issues when they were fed nothing but sugar and junk food with no routine and were told 'we aren't really sure if they're autistic, but we will diagnose them in case you need help in the future

You clearly know nothing about autism, for a start the sensory issues they have makes it very difficult for them to eat and as for saying the parents give them no routine is pure bollocks. Autistic people need a lot of routine to get through the day.

The problem with sEN is it covers soo much, I now hate the phrase. It includes those diagnosed and those not. I have all the Dys,s and come under the SEN term or SPLD (slightly better but too vague). The trouble is you can get help. (this has got worse of late not better.) But it never goes.

Haven't RTFT, but @Brogley your comment explained the exact way my child and multiple others I know have been dealt with up until now (except we've just received a letter saying as it isn't urgent he's been removed from their referral list and we will need to re-refer when 'trust restrictions are resolved'). Honestly so shocked you got it spot on. Couldn't have explained it any better myself. I've screenshotted as I can actually use it to describe the steps I've already taken. Crazy.