To think there is a definite surge in annoyance towards the disabled?

[WarySwan]

I have seen it in real life. Not just social media forums and news outlets where every other post seems to be about 'free money this for disabled' and 'free cars'.

My 2 children have autism. They get highest rate DLA. About £800 a month. We get respite care funded that costs the tax payer about £700 a month.

Just had an extension on our new build house, housing association, brand new bedroom and ensuite installed. Free of charge through the council.

Motability 7 seater car. 25 plate.

People seem to just see this and see the money. They do not see the costs that are present because of disability. The amount of time and resources it takes to keep 2 profoundly children at home.

They do not see that my children will need 24/7 care for life. 2-1 support in public. The constant cleaning and caring. Waking up at the crack of dawn, years on end. Cleaning smearing and endless washing. Endless marks on your body from a child who doesn't get that taking a chunk out of you will hurt that much and scar

Watching your eldest almost die as he can't speak a word or use a communication device. Meaning appendicitis went undetected until he was almost dying. The constant battle of keeping a cannula in his arm with hospital staff just not getting why a play therapist does not bloody cut it and he needs constant supervision that I cannot possibly do 24/7 without moving from the bedside. The weeks spend in recovery because of this.

If we do not or cannot provide this care, residential placements are about £40,000+ per month. Yes. Per month. It is eye watering in cost. That won't change anytime soon because social care is beyond shot to bits.

My children deserve the best life possible. And a dignified society should surely want to ensure this happens? Children who are not disabled and their parents have options. They have chances and doorways. Mine will never work. Never have a marriage or children, they won't even be able to cook a basic meal.

There is no overtime or upskilling for me. No situation where they fly the nest and I can focus on my career again. Unless they become some dangerous through no fault of their own that a 40k plus a month placement goes ahead as the alternative means I could die or be seriously injured, and that would mean they'd be at risk if I am literally unconscious on the floor.

They still deserve dignity and compassion. The chance of a good life. They are very happy currently. Good routines that are followed to a T. Safe at home because I have the resources to do it.

Care placement does not save money. Unfortunately. It would cost over ten times what I get in benefits.

I have seen so many mentions of people saying those on benefits should have no savings at all. Nothing. Really? You think my life isn't hard enough? You think I shouldn't be allowed a small nest of savings too?

When I finally drop down from caring, I will have next to no pension. After spending a lifetime ensuring the state doesn't have to take full responsibility for 2 adult men that will mean at least 4 paid members of staff are present at all times.

I am not just talking about MN. It is everywhere. Even 'funny' reels on Instagram targeted about how the disabled get this and that. How they should all drive a basic tiny car that has something written in bold to make sure everyone knows its a free car, as if they're really disabled, they'll use. That'll stop the chancers eh!

This is NOT about criticism towards PIP and DLA for things people deem questionable... even though they almost certainly dont have all the facts. This is about the blatant and not hidden disgust and begrudge of help to those with lifelong and profound disability

PEOPLE keep saying in black and white, no room for confusion in their words, that the disabled get too much. That it isn't fair.

I suppose this thread will get deleted. But a lot of views seem to be going unchallenged about the disabled that wouldn't be allowed if it was about something else that's suppose to be a protected characteristic. Seems to have quite a few comparisons with a certain country in Europe 80 or so years ago. When the hatred and deceit was being thrown around and brain washing people before not many years later, the public became okay with euthanasia of them.

Hell, I am sure we are already there for some. As I have seen with my own eyes, people commenting on MN and the likes of social media where their bloody name and pictures of themselves and their work can be traced, that euthanasia could be an option, ideally.

Don't live in the UK, but all this "it's so hard to get a diagnosis of autism or ADHD" is definitely not true where I live. Basically you go online, fill out a few forms and pay I think the equivalent is 500 pounds, then pay the same for your meds.
25 years ago everyone knew which of the childrens psychiatrists to go to to get an ADHD diagnosis.
Maybe things are harder in the UK but it's a matter of weeks here if you are prepared to pay, and I'd be suprised if it wasn't the same there.

I have professional experience in this area and I can say honestly that i very very rarely met anyone who was a fraud. People who verbally attack the disabled are either deeply ignorant of their genuine struggles or just bullies looking to have a go. Eithwr way, they are people who need to have a word with themsèlves and grow up a bit especially as it may well be them who end up diabled as they age. Then see how they like being treated like pariahs. We used to be a kindly country . Now far too many people read the Sun or the Daily Mail or the internet and just get brainwashed. Grow up and think instead of being a sheep bleating untruths .

@Perzival @StartingFreshFor2026 Thank you, I see I have been naive about the potential for abuse. In an ideal world where that wouldn't happen, in answer to the question about whether I'd live somewhere if I couldn't leave - honestly, yes. Managing independently for the rest of my life is like looking down the barrel of decades of more bad decisions, more stress, burning out and needing to leave/change jobs, never getting things right, never learning from my mistakes, likely poverty in old age because of the above - yes, I would. I would rather just opt out, if I could. Sorry, this is a derail from the main point of the thread.

Can I just say, a true anxiety and panic disorder is debilitating. I don’t mean feeling a bit awkward or sweaty getting on the bus, but horrific intrusive thoughts, depersonalisation and agoraphobia robbed me of my 20s.

I worked through most of this, because I didn’t actually know what was happening to me and had no idea that I could get some help, and then it morphed in to psychosis.

Lots of claimants for anxiety and depression do absolutely take the piss, but there are also lots of people on the brink of suicide because of this illness. It’s not always a Micky Mouse disability.

Nobody is paying to have their nails done out of their kids DLA.

That comment came up because someone said without DLA they couldn't afford to have their nails done, because the DLA payment pays for some of the disability related costs that were coming out of their household finances, freeing up their own money to pay for stuff for themselves... and people like you apparently don't understand that distinction.

"dumb members of the public"???

Do you know what "dumb" actually means? Or are you deliberately being offensive?

Also, police officers are not restricted to those of the male gender, so you need to think about your choice of language here too.

Given these points, you might need to temper your complaints about how others behave online.

Hi OP. I can relate. My 3 YO is autistic and possibility ADHD and I’ve been fighting tooth and nail for an assessment. He’s non verbal and i worry so much for what his future will be. He is severely autistic and screams a lot (he expresses his happiness like this. He does it when he’s happy. He does this A LOT).

People just don’t understand. The constant appointments, the speech and language, the development, the doctors appts. I am hoping that he will soon be able to get the DLA to go towards helping him now and in the future as I know I’ve got a long road, but like you said, the attitude people have is disgusting. It’s just ignorance and lack of understanding I feel.

It’s so much to take on. I’m also undergoing chemo at the moment, but I will do everything in my power to ensure my child has everything he needs, everything in place for future education and care plans and health plans. It’s not easy but wouldn’t change him, he’s perfect in my eyes.

You sound like you’re doing amazing. Well done mama.

I understand the rationale for making the ASD criteria less linear.

But I feel that removing the distinction between non-verbal kids like the OP’s and the middle-aged person working fulltime with a family who has sought a later life diagnosis, has done the former group no favours. So many ‘high functioning’ people are now talking about themselves as autistic and disabled that very severe cases like the OP’s children are forgotten about.

The less severe group have their struggles of course but I feel it’s not right to think of them as in the same category as those who are non-verbal adults in nappies etc. It is controversial I know, but I think the latter have lost out with the new criteria.

Neither of which would be enough for evidence of the level of care needs required for disability benefits.

Many GP,s will sign someone off wirk if they say they are anxious paticularly if they say its work related, that,they might also prescribe anti depressants
That means nothing however when applying for disability benefits.

I have absolutely no problems with people who have real issues getting benefits, like yourself. That is what it is there for. You sound like an amazing parent. It must be so hard.

I have issues with people who lie, cheat and sponge off of the system. Those are the ones that are abhorrent to me.

Like the silly cow around the corner, who lies about her working partner living with them and apparently goes on lots of holidays abroad. I haven't been on holiday in a long time. Boils my piss.

Totally agree with that. We all know AT LEAST one person that plays the system. I know many.

This has really made me cry. My son is 11 but this preys on my mind more and more the older I get. We're entitled to respite, funding is in place, but I just can't bring myself to leave him with someone else. It was bad enough when he started school, and when he started transport.

I'm praying I outlive him, as much as it would probably kill me to be without him, but I just cannot bear the thought of someone abusing him. He is happy and loved with me. And tbh, if I was diagnosed with something terminal, I probably would end it for the both of us.

I know some people think I should be at work because both my boys are at school, but it just isn't possible. With my disabled DS, there is no breakfast or after school club, and the cost of child care for him would be ridiculous. He often misses several weeks of school for various reasons. Plus, it's enough that I get by on about 4 hours sleep a night, and then I do have things to do all day. I'm always busy. There aren't enough hours in the day. I'm sick of feeling like I have to justify every penny we get and any funding or help we may receive. I hate that some people look at my son like he's a creature and should be locked away.

But on the plus side, there are some people we meet who respond very positively to my son. At one of the pubs we go to (my son loves a meal out), there are some regulars who are really protective of him and have said to let them know if anyone says anything untoward about him and they'd sort them out!

I know what you're saying but I still think the functioning labels or levels present issues. One of my DC presented as classic / profound autism for a long time but now speaks (a bit) and uses toilet. He is still a whole world apart from someone who would have received an Aspergers diagnosis a few years back. My other 'profoundly autistic' is not always my most complex child.

That said, I know completely what you mean about people who have degrees, high paying jobs, spouses, children they look after, can drive claiming they have 'complex needs' or are very severely disabled but mask. It's hard to stomach when you have a child who will always be included nappies and will never be able to tell you if someone is hurting them.

Personally, I think part of the solution is in professionals being brave enough and skilled enough to deliver diagnostic reports that acknowledge the struggles of so-called 'higher functioning' people but also are realistic and crystal clear in terms of their likely, true support needs.

"Many GP,s will sign someone off wirk if they say they are anxious paticularly if they say its work related, that,they might also prescribe anti depressants
That means nothing however when applying for disability benefits."

Yes I've been on anti anxiety medication for a while but there is no way I would qualify for PIP.

Medical advances mean that more children are surviving with these conditions than would have previously. People say that conditions such as arfid, allergies and adhd didn't exist many years ago but they did, we just didn't understand them. Years ago lots of children were described as "sickly" or "not long for this world". Some of them would have had undiagnosed conditions like arfid or coeliac disease. Children who these days would have constant supervision by adults would have been sent out to play, like all the other children, maybe with an older sibling in charge. Many would have had fatal accidents as children, others would have run away to sea as early teens and been killed that way. Babies born prematurely are surviving. Also medical intervention during childbirth is saving lives but is also traumatic for both mums and babies.

Don't you listen to absolute arseholes, they have no idea what they are on about. Ask any parent, what they would prefer, money or a normal child, and if they are honest, they would always say 'normal child'.

100% agree with you.

No one knows unless they provide that care. I didn’t begrudge you or anyone in that situation anything.

I’m sure most people think like that.

Try to think they do for your own sanity and happiness.

My DS was put antidepressants age 10. And yes it would be evidence for disability benefits.

What the fuck is wrong with you? Nasty, nasty wording in your last sentence there.

Like I say, because many people with autism (and what was once asperges but is no longer called that), are bloody nothing like my DC yet can present similarly as small children/babies/toddlers

My uncle was a smearer at age 3. He's now a cardiologist. No wife or family. Invested entirely on his work. But he is an asset to society.

I have a disabled sibling and as a result, my Mum wasn't able to work until they went into a residential care setting. My Dad worked 60 hour weeks to make ends meet and we lived in social housing.

My own husband doesn't understand how difficult it was for our family when we were kids. We were only talking the other day about what films we watched when I was a kid and I said we didn't really. He said they got a video from Blockbusters every week and scoffed when I said we couldn't afford it.

His family was a traditional "working class" family, so he thinks we compare, but we truly don't. I had one foreign holiday as a child, which my Nan took me on. He went away every year. His parents are mortgage free and enjoying their retirement. My parents are still in social housing. All because they had a disabled child.

Yes, we had a "free" motability car, but my God they'd prefer to have had a well child and the ability to own their own home.

People just don't understand what it's like to live with a disability and the majority of disabled people deserve everything they get "for free". Unfortunately, there is a small minority of people that take the piss and give everyone else a bad name.

Not sure if this has been said but it's untrue that 40% of Scottish children start school with a SEN diagnosis. 40% of children within the Scottish education system have an identified additional learning need and that could include being gifted, having English as a second language and so on. ALN can be temporary unlike SEN and might just be an issue that needs to be addressed in order to make more educational progress.

And there is a fatal flaw in the argument.

‘a massive amount of resource for a person that will never contribute to society’

What about those who worked for years, decades often, before they became disabled and were forced out of work when every reasonable adjustment tried couldn’t help them to perform to the required targets? Imagine what that feels like..

Reducing the worth of a person simply to how much of a contribution they make is degrading, demeaning. And dangerous.

What's the alternative? Should we let the disabled suffer, or euthanise them, perhaps, since they're useless to society?

the autism labelling thing is hard. Technically myself, and my two kids are all 'high functioning.' <vom> AUDHD but have VERY different levels of 'needs'

(Before i was physically disabled) i can hold down a job, run a household, drive, raise a family.. mine manifests in social difficulties, and sensory issues. my adhd presents more of an issue these days.

my DS19 can talk to you, but he has big social/emotional delays, can't use public transport, still needs supervision and prompting to wash/dress, has ticks, high anxiety, ARFID, regular meltdowns, can't use public transport, will never drive, and needs constant supervision and care.. he is 'high needs' alongside being 'high functioning'.

DD16 is somewhere between us.. she may make it to where i am in time, but it will need a lot of input and work to get her to my level of function.