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

[Packofsense]

AIBU to believe that the vast majority of resources for disabled children, from diagnosis to DLA to clubs for SEND children, to holiday clubs for SEND and special school places, as well as online support groups or RL support groups for parents are for autism or ADHD?

I accept that more people are being diagnosed now which is welcome news, but I'm just wondering why other disabilities aren't seeing similar levels of increased diagnosis and support?
My LO has limited mobility due to CP and I have sought support via groups in RL as well as online, yet I find that there are no groups specifically for CP in RL, and very few online. I don't know any other parents whose children have CP or similar disabilities.
In my quest for support, I have joined a number of online groups for disabled children and their parents and predominantly, the groups are full of children on the pathway to ASC or ADHD and therefore quite often, I don't feel we have the same struggles.
For example, my LO has never attended a mainstream school, will always need mobility aids and physically will always need support, which may mean supported living when DH and myself can no longer offer the support needed.
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.
This is just one example.
With the increasing levels of diagnosis, why doesnt this include more diagnoses of children with disabilities that aren't ASC or ADHD?
Why are all the support groups predominantly made up of parents with DC with ASC/ADHD?
I understand more children are being diagnosed, but why only ASC/ADHD?
Why aren't there much more resources available to reflect the increase in children being diagnosed with ASC/ADHD?
Why are the resources available being spread so thinly to the point where there aren't enough to go around?
My LO used to attend a club for disabled children, and this gave me a couple of hours of respite, but we can't use the club anymore because my LO was scared of the other children after being pushed over and bitten/struck a number of times.
I completely understand all disabled children need support but why aren't we increasing provision to cater for all disabled children?
I can't take my LO to disability friendly sessions anywhere, even when they are for limited mobility because she is afraid of being pushed over/bitten or struck and everywhere I have tried is predominantly full of children with ASC/ADHD with mobility problems which usually means a lack of danger awareness rather than a physical inability to move.
Maybe I'm just having a bad day after my LO was sent home from school today after having hair ripped out by a child having a meltdown.
I have spoken to staff over and over. Today they simply repeated that the other child has ASC and unfortunately is too quick and nimble to always prevent from getting to my child.
I feel like my LO is suffering because there aren't enough school places or resources available to cater for all of the children who need support.
In order to keep my child safe, I must withdraw from the SEND community I should seek support from and that is supposed to cater for and understand disabled DC, yet appears to cater mainly for ASC and ADHD.
Feeling quite defeated and sad this evening.

No support here either, there either 'to autistic or not autistic enough'.

I do get what your saying though but as others have said parents are mostly the ones that organise these groups .

Strictly speaking to have asd you have to be disabled, in that your difficulties have to be severe enough to impact your life to that degree, BUT of course it is possible to meet the additional needs of a disabled person so well that they are not impacted by their disability in that situation. I think this is true for many disabilities. For some though they never receive the support needed and for many it is still unachievable.

When mine was diagnosed with ASD and dyspraxia after an 18 month wait for assessment OP, we were given a poorly photocopied booklist and access to a two day course that was held 20 miles away and had a 9 month waiting list. That was all we were ever offered.

Are you saying OP that there are lots of children that have undiagnosed CP? Or what disabilities exactly are you saying are being under diagnosed in favour of ASD?

I think you would be better off concentrating on the issues that are directly affecting your child OP. Your child has been hurt at school, that might happen very occasionally - but is it happening more than that? If so you need to keep going back to the school as they have a duty of safeguarding towards your child and you need to ask them how they are going to keep your child safe. If this child is hurting other children as well then speak to their parents and arrange to go in as a group. Follow the schools complaints procedure and escalate it as needed - I expect after speaking to staff you would then speak to the Head and then if still no joy move on to the governors. The other child might need 1-1 at all times or even 2-1 and not be getting the support they need. It is not the child's fault that the school aren't providing it. In fact it's not the schools fault either I expect - it's lack of funding from the government.

I think you would also be better off sticking to online groups that are solely about support for parents of children with CP. If it seems there are a lot more for those with ASD then it will be because there are a lot more parents with children with ASD who are probably also the ones starting up these groups. Of course there is also the option to start your own group. It's unreasonable to be angry that there are a lot more parents with children who have ASD than there are parents who have children with CP - and autistic children who have no fear as children may continue this into adulthood and may well need residential care to keep them safe.

You're having a difficult time OP, your child is having a difficult time and it is shit and unfair. But the problem is the government and their cutting and cutting of SEND schools and their general underfunding of all schools. Your problem is not with ASD kids or the parents of ASD kids, it's with the government.

Exactly. I am sick of the word disabled being seen as some sort of negative.

as for support groups it is well worth remembering that most support groups are set up by people who are living through that themselves in some way and feel able to offer help and support to others.

when it comes to general funding for things for those with disabilities it’s lacking across the board and what is available often doesn’t meet the needs of most of the community it is meant to serve. My son can’t access any of the “break time” activities that are supposed to be available because he needs don’t fit neatly into the boxes!

I agree.

I remember a thread where the OP has similar feelings of isolation. Everyone just piled in and told her to sign her DD up for riding for the disabled!

So to be able to 'mainly' function in the world your child needs medication, support and accommodations made for them - but you still don't consider them disabled? Do you understand what disabled means? It doesn't mean you are not able to do anything at all for yourself and are completely and utterly reliant on other people.

Your friends child is more severely disabled than your child, no doubt about it. But if your child wasn't disabled then they wouldn't need medication, support and accommodations just so they can 'mainly function adequately'.

Would you tell someone who had no legs that they weren't disabled as they were able to mainly function adequately because they have a wheelchair and live in a modified house?

Your view isn't unpopular, it's just plain wrong.

Really fair point. I think services could be better funded and more resource put in. But yes there is absolutely a social responsibility as well.

I'm so sorry there isn't adequate provision for your child, OP. Speaking as the parent of a severely autistic child with significant learning disabilities, I can tell you there are sod all groups, holiday clubs, after school activities for children like mine. His special school is great and provides plenty of enrichment activities during the school day but they don't run after school clubs or holidays or anything like that. And we know how lucky we are to have him there!

I get newsletters for 'ASD' families and everything is geared to kids who are very much more capable than my son.

Agree totally. Neither my DS1 (high functioning autistic) or my DS3 (hearing impaired, visually impaired, tube fed, learning difficulties) agree that they are disabled because they both know that society sees disabled people as inferior beings. But I know how much effort and planning it takes to leave the house with either of them so reckon they both are significantly disabled.

Back to the original question, in our area there is help for both of them but you can only access it with a diagnosis. DS1 was diagnosed five years after I first raised concerns. DS3 was diagnosed at birth. Physical disability tends to be a lot easier to spot.

I mean, I have quite a few friends now whose children have a wide variety of disabilities, including ones with global mobility issues. They don't complain about the provision for 'other' disabilities and there is a real sense of comradeship that we are in the same general boat

OP, my son is one of those autistic kids who will continue to run into the road without care or attention as an adult. He'll always need at least one to one care when not in a classroom. He isn't going to 'get any better' and I don't understand why you'd think this. We teach him as best we can, it's painfully slow and his brain is wired differently, quite aside from his cognitive age which is about three (he's 13). He IS disabled. You don't get better provision for your child by claiming that everyone else's isn't as needy as yours. Sorry, I'm sure your situation is just as hard and ours, but in a different way.

I know areas vary hugely, and my children are preschool so it is possible I am wrong.

But for example our area has a trampoline park with SEN sessions, soft play, there as a fireworks display for SEN children, one visiting Santa. The language very much leaned towards ND children as the target audience if you like.

That is good, but the OP has made me think that if your child is disabled but doesn’t have autism or ADHD, it’s hard. And given that isolation is a big issue for parents with disabled children anyway, this must massively exacerbate it - a sort of not fitting in in your own home feeling.

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

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.

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?

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 .

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 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.

@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

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.

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.

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

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.

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.

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.

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