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.

Ah sorry, misunderstood - that'll teach me to mumsnet at 2am!
Thank you, that's very kind of you - same to you, it's nice to agree with someone on this stuff

I have similar, positive, experiences with an older autistic child. To be fair though, although some of the things we do are autism specific, several of them that I am aware of, or that we do, are not:
There are several council-funded short breaks that are for children in special schools only (which would include some autistic kids, but also others), there is adapted sailing, caneoing and speed boating riding sessions, there is trampolining, wheelchair ball sports, frame running, climbing, including for wheelchair users, a group where families go out together to local attractions, a centre full of sensory and play equipment that runs sessions grouped by need (ie non mobile, quiet, needs lots of space to be loud and run around), bowling, hockey. That’s just off the top of my head. I’m sure there is more I’m not aware of for kids that don’t have autism as I don’t seek those out. I am in a city, but I wonder if there is stuff out there that you just haven’t found yet.

Children with autism and children with severe mobility problems caused by CP are both disabled but may have very different, and sometimes incompatible needs. Nevertheless it seems that in the groups you've attended they've been lumped together, this is probably a resource issue.

Children with autism may be dominating these groups simply because there are more of them. Or because other parents of children with profound physical disabilities find they are unable to attend these groups, because of the behaviour of some of the children attending with autism.

Ideally there should be a recognition that both types of disability (predominantly social/communication/behavioural impacts vs predominantly a disability affecting movement and body functions) have a major impact on families and are very worthy of support. But at the same time, they are distinct, affect children in very different ways, and the very different needs that those children have should be met in different ways.

I imagine that not only would you be happier if you could attend separate support groups / facilities specifically for children with disabilities affecting movement, but that families with autistic children would be happier if they were able to attend separate support groups / facilities specifically for children with autism.

One of the most difficult things for parents of children with marked autism is having to navigate the gap between other people's expectations of their child's behaviour and what their child is and isn't actually capable of. Groups / facilities where the expectations are realistic for their children are obviously therefore going to be a source of great relief. But probably not the best place for physically disabled and vulnerable children who will get hurt in these spaces.

Separate provision is the answer not lumping all disabled children together regardless of their individual needs*

*The same issue happens even within diagnostic categories. Eg the very different experiences and needs of a child with autism whose main difficulties are related to mental health, bullying at school, achieving their academic potential etc Vs a child who is non verbal, needs nappies and has violent meltdowns. They don't benefit from being in the same support group either, even though they may share a diagnosis.

I think your description is accurate. I don't know the reason why.

I worked in a Child Development Centre doing preschool developmental assessment clinics. At least ten years ago, we mainly saw kids with CP, genetic conditions including DS, LAC and occasional ASD. Currently, these clinics are essentially diagnostic services for ASD as there are so many to be seen. The kids with other conditions are still here but they don't get seen in these clinics any more as the ASD diagnoses have been prioritised.

I agree that special education looks very different now too. I also see a lot more kids in wheelchairs in mainstream)at least in primary). This means they're not in special school which reduces the peer group there.

Locally there are some in person support groups for specific conditions including CP. The ones I know are all exclusively run by parents and they fund raise or are affiliated to a charity like NDCS.

Perhaps there might be a local CP support group for you. Best wishes

One of mine is on the pathway and I have been offered nothing whatsoever.
No groups, no parental support, nada.

So whilst I fully sympathise and empathise with you OP, and I do believe you have it harder than we do (even though we ought not to be in competition as it's not a race to the bottom) YABVU to believe there is any access to these things for all ASC children, there's not.

Many of us awaiting ADOS/DISCO have been left for years in the system.
In my area, many opportunities are for children with FSM. I accept that and support it - I'm just kicking myself that I didn't apply for them when I was eligible (I earn more than 7k now but at the time I wasn't earning at all, should have put in an application, as Pupil Premium/FSM is until the end of the key stage.

Swings, roundabouts. I try never to compare as it doesn't ever help in the now.

Parents often start groups themselves because there isn't much out there for anyone. My friend had 2 autistic children and runs a support group. Other parents who attend take it in turns to help out. Maybe do that instead of having a dig at people who are ND, there's too much of that shit on here already.

To add, our local Down Syndrome support group was also started by parents as there was nothing to help them. Other parents have continued it and it's still going after 25 years.

If you want something, make it happen, like other parents have had to. You could also campaign for better support, contact your MP etc, anything but moaning about ND people, especially when they or their parents have often had to make a lot of effort to set up the groups themselves.

Why would child in a wheelchair ( assuming there are no cognitive disabilities ).
Nor be in mainstream?

@x2boys

I was commenting on the changes. When I started work 20+ years ago 'mainstreaming' was just beginning. Buildings were often not physically accessible. Schools were allowed to stipulate kids must be toilet trained etc.

Kids with all levels of cognitive ability tended to end up in special schools. We lost a lot of expertise when mainstreaming started and special schools closed. There are pros and cons to all situations.

I think it is also valuable for kids to meet people like them as role models and peers. It might not feel great to be the only kid/person in school with wheelchair/hearing aids etc.

When DD started mainstream school, she became obsessed with finding 'people like me' and would want to stop strangers on the street to talk to them if she saw hearing aids.

I'm a bit confused about where you want to draw the line of disabled/not disabled.

I have migraines, which cause a long term negative effect on my life but can be holistically managed away. Effectively it makes me 'not disabled' in your view.

It's all a bit silly when the fundamental thing is that OP's headline is untrue.

There are enough resources and there is enough time for all of these problems to be solved, regardless of where you draw the line.

The better question is why aren't the abundant resources we have shared equitably.

No worries, I could tell that my post wasn't coming over to you as I'd intended-probably cause it was 2am 🤣, so happy to re-word it. Glad that I was able to redeem myself 🫠