To think there are not enough resources for all disabled children?

We've also got to remember that several disabilities are screened for and parents are offered termination, so those conditions will be seen less in our SEN communities. Then about half of cerebral palsy is linked to prematurity, so those children are immediately known about and therefore those parents aren't having to fight to get their child's disability diagnosed.

DD1 has a brain malformation. I was saying from a very early age that I thought something was 'wrong' (I'm talking weeks) and I was told I was paranoid, 'reading the textbooks', 'being a nurse, not a mother', etc. This went on until she was 20 months, where she was found to have hypermobile ankles. Still no paeds. 2½, I took her to preschool, and they said she was behind. No paeds. Still falling over 'inner ear infection', 'unsupportive sandals'. Finally, sent to the hospital when preschool saw her pole axe away from the play dough table. Global Developmental Delay, epilepsy. The paed still assured me the CT and MRI would be normal. CT was. MRI wasn't.

Developmental conditions are hard to get investigated. She was 15 before her ASD was diagnosed. Now a wheelchair user too. That took about 10 years to get sorted.

It’s all shit for all kids with SEN really, but I do get what you’re saying. The SEN Facebook groups I’m on are predominantly parents of children with ASD. It’s just the most prevalent disability 🤷🏻‍♀️
Start a group? I started a SEN one for my area as there was nothing and it’s been great and very useful. Post about it in groups like SEND reform and I’m sure you’ll find like-minded members.

And very few will be accessing support.

With better healthcare & advice & vaccination etc the number of children being born with & living with physical disabilities has gone down. That's not much to be thankful for of you are struggling with a physically disabled child but I don't think holding a grudge over parents with autistic children is helpful.
There's more parents with autistic children because more children have autism & fewer with disability from polio, measles, rickets, spina bifida etc.

I was going to type a long, considered post. But I just can't muster the energy. I have 3 children with ASD. Range from complex needs, LD & physical mobility difficulties, to intelligent but find academics hard due to language difficulties, to super academic but in burnout. All 3 need specialist education. The 'most disabled' one is the only one who has stayed in state education throughout, because there was provision for her. The other two require independent providers because there is no state provision that can meet their needs.

In the 18 years I've had DD1, there has never been a support group that 'fits' DD1. She has physical needs that most kids with her level of LD don't have, she's more verbal than most kids with her level of LD, but less socially able, and it creates a hot mess in terms of provision, which is why 3 education placements have failed.

I actually agree with you OP.

There was an article a few months back about disabled benefits for teens doubling or trebling due to Autism and ADHD and outpacing disabled benefit claims in other age categories.

But having just helped a friend write a complaint about not receiving an official ASD assessment by her local borough SEND department after a three and a half year wait, (the child has perhaps the most severe case of ASD I have ever seen it even affects their ability to coordinate walking ) and having read the NICE guidelines for education assessment for disabled children/ children with SEN, I must say I see it as a fantasy document when compared with the reality. And I have a nephew and niece with ADHD, quite badly affected, both of them.

But still I can completely understand your point of view.

I agree that there ought to be some way of tiering disabled support for children based on the actual way it affects their lives more. But overall there really isn't enough funding or support full stop. But yes, I agree you ought to be able to get more support.

The reason there seems to be a rise in support groups is because there has been a rise in diagnosis. Simply due to the fact its been under or mis diagnosed for decades. There aren't many other conditions that are underdiagnosed to this level, so I wouldn't expect there to be a rise in diagnosis of other conditions. But the huge spike in ppl getting diagnosed has led to a huge demand for services.

People don't understand the condition, they don't know how to cope and it is still a very stigmatised set of conditions. Where people don't really see it as a as serious as other disabilities, this also creates a huge need for people to talk to people that do understand and don't judge.
(Im going to make it clear that the rest of this post is to educate not insult, as I genuinely believe you meant no offence when you wrote this, but it illustrates the point I will go on to make, and hopefully gives some insight into your question)

You yourself, without even realising, totally trivialised the condition (adhd specifically)as being not as bad as the disability your child has, and therefore your struggles as a parent of a disabled child were not comparable, when you said

"In contrast, other parents in these groups have the challenge of their DC having no awareness of danger and running into roads etc, yet there is hope, I presume, that their DC will learn ways to manage these impulses? Otherwise we may have adults in a few years who will be running into roads? This difference matters because there is little common ground"

What is it about ADHD in particular that makes people certain that it can't 'be dealt with' 'get better' 'just learn to not be so impulsive' 'just try harder'

No, they do not just figure out a way to deal with it, and yes, you do have and will have adults with adhd doing the equivalent of 'running into roads' figuratively and literally!! but because the majority of people think this way, that is why there are so many resources on offer, and so much of a fuss being made to raise awareness, because I'm sure you have never had someone infer that your child would surely just get over their disability as they got older and wouldn't need as much help as an adult.

The fact that there is a total lack of support for ALL disabilities is not something I would argue with at all, BUT picking on the neurodivergent population who up until now have had next to nothing, because they are suddenly being offered the support that should have always been available based on it apparently not being 'that serious', can be very harmful. This group of people are having to prove they even have a real disability, whilst simultaneously defending their diagnosis and desperately trying to navigate school ot work in a world that mostly still thinks, you could do it if you just trued hard enough. Trust me, there is no where near enough support for these people

Every person with a disability deserves support, every parent of a disabled child deserves support, but no disability is above or more worthy of support than any other. And adhd is one of the only conditions where certain people will tell you it doesn't even exist, whilst parents are judged as just being bad parents.

What other disability can you name where people will say there's nothing wrong with the child. The parents just don't discipline them properly?

Support for ADHD is also very very complex due to it being a spectrum disorder, so there's no one size fits all place to go. And pkease excuse the crude analogy here, but its just to illustrate a point For example, if you are paralysed from the waist down, you will be a wheelchair user, you can join a support group where EVERYONE is a wheelchair user, you will all have this in common and will be aware of the challenges you ALL face-theres no ifs or buts about not being able to stand or walk, you can or you can't. There is no such definite criteria for spectrum disorders because everyone's level of disability and need will be monumentally different, this is another reason there are so many groups because one size does not fit all. I hope this gave a little insight into this 'phenomenon' and once again, educate, not insult is ALWAYS my intention. And if anything I said came across as upsetting negatively impacted you in any way, I assure you it was not my intention and apologise.

I get the frustration with special schools not being able to cope with some DC behaviour. My FS attended a special school and was completely overlooked because he was quiet and didn't have these meltdowns. He loves learning but used to get frustrated because some children's behaviour was so poor the teacher stopped teaching to deal with the meltdowns but they happened so often little learning happened. We found once he got to college he flourished. He got more done in one year than 3 previous years. Have you tried cricket for the disabled? The Lord Taverner's run a programme that is free to attend and a lot of DC in wheelchairs go. They have county teams called Super 1's and weeks away too.

Yes aggression is fairly common. There’s nothing wrong with saying so and it doesn’t mean the aggressor is to blame or can stop it or the victim is any less of a victim. Pretending that it doesn’t exist or that the person being hurt isn’t a victim is dreadful.

Can’t say I’m surprised that the OP hasn’t come back. Wind em up and watch em go. Especially when the topic has to do with children with disabilities/additional needs

All this victim and aggressor stuff is ridiculous. We are talking about disabled children whose support needs are not being met in their school environment.

Describing the children in this way misdirects attention away from the actual problem, which is a lack of adequate provision to meet children’s needs.

@CwmYoy thats not what happened to us. In our case the victim lost his education and the aggressor stayed in school.

Actually it's yes.

The school is obviously unable to cope with the violent child. So that child needs to be removed to keep others safe. And found a better placement.

No.

If a special needs school has been unable to manage a child’s disability, they need to look again at their staffing, procedures and such like.

The child you just want to exclude also has a right to an education and to be safe - and that includes preventing them from hurting other children

Let’s not just blame the child here.

If the school cannot prevent that child from harming yours then that child should not be in the school. Your child has a right to an education and to be safe. If the school cannot provided that then they need to remove the cause.

You couldn’t have a dual diagnosis of autism and adhd until very recently either.

This!

My ASD DD would have come under the high functioning label when it existed. If you met her on a good day you'd think she was completely neurotypical.

Transition from primary to secondary school caused autistic burnout so severe that nearly four years later she is still unable to access education. In that time we've had one phonecall from educational welfare.

She spent over a year in her room barely speaking, no self-care, no ability to do pretty much anything. It took 18 months to get even the lowest level of help for her and CAMHS tried to discharge her while she was actively suicidal because they put all her issues down to autism and they don't cover that. The autism service doesn't cover mental health problems, so who is supposed to help these kids? Like many others, she was diagnosed autistic and discharged from the autism service with a couple weblinks for support. She feels like no-one in health or education cares about what happens to her at all.

I'm sorry you feel so unsupported with your child's disability, but believe me, parents of ASD kids feel exactly the same.

With the increasing levels of diagnosis, why doesnt this include more diagnoses of children with disabilities that aren't ASC or ADHD?
Because other disabilities have usually been easily diagnosed, especially physical disabilities. Whereas ASD and ADHD have historically been under-diagnosed, especially in females and minorities. Now doctors understand it better and they are no longer overlooking so many of the kids who are affected.

In fact, until 1994 you had to have an intellectual disability to be diagnosed with autism. If you were of normal intelligence you couldn’t have autism. Now the diagnostic criteria have changed and doctors understand that you don’t need to be intellectually disabled to be autistic, so more people come under the umbrella.

@Fionaville

I'm classed as high functioning and I do really get your point as I can do soooo much more than my 'low functioning' child. BUT I can't cope in the way NT people can and when I try I have a full psyc breakdown and become so low functioning I can't wash or feed myself or even talk half the time. So I do get cross about the functional label because it varies day to day for most of us

There just isn't enough support or resources to go around.

I e found all the support groups local to me are parent led so they set it up for the disability that effects their child.

I also agree a lot of neurodiverse is not disability. I'm autistic and ADHD, it certainly makes life harder but I'm not exactly disabled by it, I have one autistic child who I again say isn't disabled but my other autistic child most certainly is disabled. And my disabled child can't access groups for the same reasons as your child with others behaviour. He can't get a school place in special school as he's academically capable and verbal but can't go to mainstream because has no safety awareness and soils and smears it.

Another side to this is neurodiverse people are used to being dismissed and having to fight just to have their difficulties acknowledged. No child with CP or Down's syndrome or other very obvious disabilities will ever be told their child struggles because of their parenting.

Blame the government not the other parents and disabled children. I've worked in childcare over 20 years and watched as the support for disabled kids was cut and cut.

It's an interesting point. My son is a young adult now. He can walk and talk just fine. But is diagnosed as having moderate learning difficulties alongside the ASD/ADHD. He attended special school. He will always need a lot of support/understanding to access a workplace and it will likely need to be a specialist type placement. I couldnt imagine him finding a girlfriend who doesnt have SEN on some level of her own. In that sense, his disability impacts all areas of his life.
At the same time, a stranger having a short conversation with him/observing him walling etc, would probably say he isn't disabled. Until he started stimming frantically talking to himself (echolalia) but is that enough to be classed as disabled?
In the old days he'd probably have been classed as the 'r word' and nobody wants that. So people with autism AND high needs are classed as disabled. Are people with ASD/ADHD, higher functioning classed as disabled too? I'd say not, but I don't think they are anyway? This is what I find difficult to establish when getting told off by adults with ASD on here for using the wrong language. For saying high functioning/lower functioning. Surely there needs to be a way to distinguish between the two. Because just from how they write on here, it's obvious that they are worlds apart from my son and his peers. I've not been able to get a straight answer yet.

There are many children with Autism that also cannot access those groups for exactly the same reasons as your child OP.
My eldest is autistic with ADHD. She has internal presentation autism which means her meltdowns are completely internal, she just quietly shuts down and at worst becomes completely mute. She also has inattentive adhd, so once again is outwardly calm but inwardly mind racing with a poor attention span. She’s triggered by loud noises and even minor violence/ rough play, the same as your child. She also has moderate learning disabilities which she’ll never grow out of and will likely always need extensive support to be out in the world.
Many children with similar symptoms cannot attend mainstream or special needs schools for exactly the same reason as yours. It’s partly the reason for the epidemic of school refusal that’s gotten worse after Covid. the only way to cure it is to have classes and groups split by children’s actual needs rather than one sized fits all labels. However , that requires money and we all know the current government will not pay so thousands of us all over the country are stuck in the same frustrating position as you .

I understand where you’re coming from but I think you’re looking at it the wrong way.

I have two toddlers. One has a rare genetic disorder called DYRK1A (pronounced Dirk-1a) which is a neurological genetic disorder. He’s now 20 months old and was diagnosed at 3 months old. He has mobility issues and so many other things going on. He also has a very big healthcare team.

My daughter is 2 and is on the pathway to be diagnosed for Autism. When I come across groups (which is rarely for children with special needs btw) there does seem to be more groups for children with ASD/ADHD. I have to seek out support for my son’s condition because of how rare it is.

All that means is that there should be more support that is accessible for those with physical disabilities. It doesn’t mean ‘well those children who are neurodiverse should get nothing (or less) because my child doesn’t get this.’ You’ll have to seek out groups that can accommodate your child. A lot of groups have been started by parents because they felt the same. Maybe you could consider that?

I have two friends who have children with CP and they go to group sessions at their local Children’s health centre with other children that have CP. Do you not have anything like that near you?

Surely that's why there are different levels of claim for child disability payment or dla? If your child's needs are not inhibiting their life to the point of bring disabled then great and you clearly don't feel the need for that distinction. Many children with Asperger type diagnosis are inhibited to the point where their and their families lives are significantly impacted. I suspect many go on to have further diagnosis as they grow older. This is why it's not the diagnosis that's the concern but the level if adjustment and need of each individual child.

So what are you suggesting OP? That resources should be taken away from neurodiverse children?