Is it moral for me to claim disability?

[QuietGarden3]

I’m autistic and was diagnosed as an adult. I’m really struggling to accept my diagnosis because I feel like some of my symptoms might be improved and the diagnosis is so common I’m not sure it’s real anymore or if it’s just my personality, an illness or the way I was raised or a combination of all those things. I’m verbal, not aggressive, and able to reflect on my difficulties. But I’ve experienced being ostracised, targeted, threatened, and have had problems at work. It feels like I’m in trouble almost every week. I have a very small number of friends who understand me well, and I often need someone to explain or defend my behaviour for me. I also experience severe bowel issues.

I was advised that I would need a lot of professional help to address my behaviours and reduce being a target, but that support doesn’t exist on the NHS. I’m wondering whether claiming might make some of that support accessible for me.

I am aware that this benefit is often associated with children with more severe autism, such as non-verbal children in nappies, but I’m wondering whether it’s morally right for adults like me to claim.

Oh they will but I found the Tribunal very fair good luck with it.

I have a professional job, I can sit and contribute in meetings and have a lot of responsibility. When overwhelmed (which is often), and sometimes just on a day to day basis, I struggle hugely with transitions, which means I struggle with things like having a drink, have a shower, leave the car without prompting/support, and also struggle with things like washing and cleaning, taking medication and managing my money and need support for these. None of this affects my work.

I will fight like a tiger for as long as it takes - they haven’t a chance in hell of being able to deny us forever - he’s non-verbal, profoundly autistic, severe learning disabilities and developmental delays. I just absolutely despise that their strategy is to put families through all these hoops to get what they are entitled to, in the hope that they’ll lose heart along the way and give up, saving them a bit of money. It’s so dehumanising.

I don’t deal with kids’ claims (as you’ll know, it’s all separate from adult PIP). But I’m wondering if they’re giving you reasons for refusing/underscoring your claim? From what you’re describing here, I’m struggling to see how they could possibly do it, and what their rationale would be.

Are they giving any reasons, any counter argument to what you’re claiming your child’s level of need is?

I think you’ve humanised why I’m so uncomfortable with people who can work, and aren’t very physically disabled, getting the money. I could in theory apply but I work, can afford my extras, and ultimately don’t really need the money for anything. We’re storing up huge problems by simply handing out PIP for high functioning autism, anxiety and ADHD. The money really should go on better quality respite care for exhausted carers of people with profound disabilities (like your DS) as firstly they deserve it and secondly it’s going to cost a fortune when they break and need emergency intervention. I hope you are awarded soon.

They did the same to me ,my son is also severely autistic, non verbal etc ,but the Tribunal.were very fair as soon as I walked in they indicated they were going to find in our favour and just asked me a couple of questions ,sent me out for a few minutes and when I came back in there was a nice of paper saying my son had been awarded HRC and HRM ,it shouldn't take going to tribunal, paticularly when its very clear the level of need but often it does.

They declined high rate mobility despite 55 pages of evidence proving SMI, saying “we have given you low rate mobility as he may need support to navigate places that are unfamiliar to him”. He can’t navigate from our living room to the bathroom without support!!! I don’t think they bothered to read the claim at all!

Thank you! I am autistic and have ADHD and anxiety myself, and there is absolutely nothing about our needs that is the same.

I am autistic and I claim PIP. I have other issues too which are all mental and not physical.
It is not impossible to be awarded for it but you need a lot of evidence to back up the struggles you have. I had a mental health team. Family can also give accounts and you can make a diary and submit that too. CAB are good at helping with stuff like this too.
If you want help with the struggle you have due to your autism then there might be help out there. Do you have a MIND branch where you live? The one where I am has an autism service. You get a one to one worker and there are courses they offer to help you understand things like boundaries and keeping yourself well. It is worth a look about. Some GPs have people called community navigators too which can help you to find and access other support.

I am autistic and get PIP (enhanced rate daily living and mobility). I've been getting it for years, since it was DLA for adults. I have MH issues too but no physical health issues. I don't work and I think it would be difficult for me to work, although I am academic and I have a couple of degrees. I don't feel any moral dilemma in claiming it. If I wasn't entitled I would have been turned down. I've never needed an appeal because I prepare my forms in detail and collect tons of evidence. What has helped is having professional reports to support my application - for me, that included my social worker, OT, psychiatrist and CPN.

I think you've just pointed out that there are huge assumptions about what is 'disabled'. DD2 should be capable of work, physically. We are still, at the age of 18, fighting the same battle we have fought since age 5. As soon as Christmas is over, the anxiety about going back to school begins. She's in a special school with bespoke timetabling and complete 1:1 support through the day, and still she can't cope. The rhetoric about people 'just turning to PIP' isn't helpful. If someone meets the PIP criteria, they meet it. I have 3 wildly different children. One is verbal but has learning disability and that combined with her ASD and ADHD traits (awaiting diagnosis) means she is never going to be independent. One is of 'at least average intelligence' but her ASD and language disorder plus anxiety and depression means that she has struggled to get to more than 50% timetable in years. We limp from burnout cycle to burnout cycle. The third is exceptionally intelligent and was heading for grade 9 GCSEs. Now in a special school after a breakdown and will require extensive support to get to the point that she can function in society. All get PIP and all deserve it. DD1 won't need to justify it because it's so obvious. That's the only difference.

How does it work if you can sometimes do these things but other times can’t? I have narcolepsy and some days I won’t eat because I can’t wake up. I have my meals made for me as a result. But other days if I can avoid a sleep attack, I could manage to bung something in the microwave if need be. I can’t live alone for safety so have to live with family. But I can do my own personal care.
Some days I could manage to take the dogs out. Other days I literally can’t wake up and my family has to do them. But if I was seen walking my dogs, would I be seen to be claiming fraudulently? I find it so confusing.

I have narcolepsy, Asperger’s and a chronic autoimmune disease. All diagnosed. People tell me I should try and claim but on reading the forms, I’d have to talk about a bad day, but that wouldn’t be every day. Would I leave myself open to trouble then?

It goes on whether you are affected for over 50% of the time. The assessors explore that at the assessment.

Just be honest and write what you have written here
And send any professional evidence you have to back you up.

I have a desk job, I have adjustments at work such as extra breaks and my job doesn’t require me to do physically tiring / physically difficult tasks like getting dressed, chopping vegetables, showering, walking. I can use my voice to dictate at work or I can just use the mouse and keyboard which is a lot less movement than getting ready for work in the morning.

Work is mentally exhausting so I do have adjustments in place. I get up earlier because I need to sit down in the shower, lie down to rest after showering before getting dressed, lie down to rest during getting dressed, lie down to rest after dressing… you get the idea

its perfectly possible to need PIP and be able to work

It does take some time for how to fill in the form because you need to fit your specific needs into the very generalized questions, but they do apply to conditions like autism as well as physical disability. An example of how to do this could be:

Needs communication support to be able to express or understand basic verbal information.
I work as x at y place. I find it easy to understand factual information such as "please take the white file to the corner office" but I can take longer to process this than the average person. I am unable to understand tone or subcontext and I have x, y and z reasonable adjustments in place to support with this.
I am unable to express basic work information in a way which doesn't offend other people accidentally, and I need someone to advocate for me on a weekly basis to help resolve misunderstandings. An example of this would be last week when I was asked to share a box of donuts round the office. A colleague took offense at me offering her one and I still can't understand what happened. My manager spoke to me to explain that she felt I was saying she was fat, and asked me not to do that again. A colleague came with me to the meeting and explained that I was following the instruction given in a factual way.
Over the last 5 years I have received 6 verbal warnings and 4 written warnings for this type of miscommunication, and have been asked to leave 2 workplaces. I find these incidents distressing because, even after the event, I am unable to understand what has happened and I require an advocate to support me.

I just don't understand why you think this. The criteria for each activity for PIP is laid out in the descriptors. To fulfil a descripor, the activity has to be done:

• Safely (the applicant is not in danger when carrying out the activity)
• Reliably (To an acceptable standard)
• Repeatedly (As often as is necessary)
• Timely (at least half as fast as someone without disability)

The minimum score for the daily living part of PIP is 8 points. That can be achieved by scoring 2 points across 4 descriptors, 8 points on one descriptor and no points on others, or any other combination.

The activities are:

• Preparing food
• Taking Nutrition
• Managing therapy or monitoring a health condition
• Washing and bathing
• Managing toilet needs or incontinence
• Dressing and Undressing
• Communicating Verbally
• Reading and Understanding signs, symbols, and words
• Engaging with people face to face
• Making budgeting decisions

Someone who is physically disabled may score points for dressing and undressing, washing and bathing, and managing toilet needs, but be perfectly capable of working throughout the day.

Someone with anxiety and depression may score points for engaging with people, washing and dressing, taking nutrition, preparing food, etc., but may be able to work in a highly structured and predictable job.