ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

Some of the Nazi footage wasn’t released until then as had to wait for it to be declassified by the German government. Declassification usually is 50-70yrs after initial classification, as most governments set a date to review classified information and then decide whether to release or renew the classification. So these Nazi reels of old footage weren’t even available for study until fairly recently.

Minuscule and insignificant

I'll remember that when I'm rocking back and forth, unable to talk and crying.
When I can't talk to people in real life so I stand there counting my fingers.
When I forget to eat and drink untill some one asks me if I have.

I'll remember my needs are minute and I'll just try fucking harder.

Could you buy in some support @Thesmallthings You have to pay for support as an adult anyway (even those who require 24 hour support have to pay a significant contribution towards their care costs unless health funded and that is very rare indeed. Those living in residential homes lose the care component of PIP etc).

Nobody is suggesting you just try harder. Ffs can you not even try to imagine what it would be like if you couldn’t communicate AT ALL?

I have a support circle that helps me daily. With reminders and will step in when I can't function. Which isn't every day.

Having to work, being over stimulated not being able to be allowed to decompress from it it all which leads to burn out and not coping.
Because the out come is work full time and burnnout and not function or try and help my self and get fired and Habe no money to support myself and children.
My financial situation is not the best. But we get by.. again with support.

I can't afford any help. Such a life coaching which I think I would find helpful along with counciling. Though iv had cbtyand that did nothing.

I can imagine.
And they deserve all the help they can get and then some more.

But why does that mean you can say my support needs are stupid and don't count and I don't need support.

And you are telling me to try harder... Because obviously you know my life and that my needs are minimal so the fact that I'm not coping and getting by by the skin of my teeth means that I just need to try harder cos I'm failing at life.

I’m also autistic. I struggle to talk to people. I forget to eat. I have panic attacks. I have difficulty with executive functioning so I’m constantly late and disorganised and can’t find stuff. Some days I struggle to even have a shower.

But at the same time I recognise that I’m a mother, with postgraduate qualifications, I’ve had jobs and relationships, and I can do stuff like walk and talk and use the toilet and cook etc. My needs are nowhere near the same as a person with severe autism. That’s why I think there should be a different word to differentiate.

I wondered why the term Aspergers was no longer used
Ok I agree that Asperger’s is a bad choice of word because of its history. But I still think there needs to be a word to differentiate high and low functioning people with autism.

Could you buy in some support
Where would the money come from though? A large proportion of autistic people are unemployed or under-employed. Most don’t get any disability benefits. I certainly wouldn’t have the money to pay for any support.

@Schlaar people who need 24 hour support pay a considerable contribution towards their care. They don’t work , it comes out of benefits. For someone with less intense support needs it might well be more cost effective to organise the support they need themselves .

The only people who don’t have to pay are those who are CHC or section 117 funded. It’s rarely given (luckily for my son he does fall into one of those categories - but I only know of one other person locally who has that funding).

I also think the support that would benifit less severe autism/ADHD should be more well known about or advertised.
Even if it is paired for.

Teaching and supporting and allowing work place to accommodate us would lessen the cost on tax payers by lowering thoses on benifits.

But why does that mean you can say my support needs are stupid and don't count and I don't need support. it doesn’t and I don’t think that your needs are stupid or shouldn’t be met. I need glasses, I can’t read or drive or do very much without them, I’m not blind though and my need of glasses is insignificant compared to a blind persons need for drivers, canes, braille, tech etc. I STILL need my glasses but push comes to shove I do not have significant needs in a room full of blind people.

Not once have I said my needs are greater.
I'm autistic not stupid.

By your lodgic .. you need glasses. But you don't deserve to be given the tools to see better. So no glasses for you.

Or if you want those glasses.. make it near impossible to get due to resources or money
But remember glasses will only help and improve life quality and length... Other people are blind so don't expect any help. Just try harder to get on with life with out them.

@Schlaar people who need 24 hour support pay a considerable contribution towards their care. They don’t work , it comes out of benefits. For someone with less intense support needs it might well be more cost effective to organise the support they need themselves
Yes, people with severe needs receive benefits which they use to pay for care. But what about people with less severe needs? Those people don’t receive benefits. How are they supposed to pay for support?

I agree, it is more cost effective to organise support myself - but how would I pay for it? I don’t receive benefits for my autism because my needs aren’t severe, so my budget for paying for support is £0.

You have the right to request a social care assessment. As part of that, your finances will be assessed. If you’re a very high earner and/or have significant savings, you’d be expected to self fund. However, you’re entitled to access an assessment of needs via your local adult social care team.

@Thesmallthings thats not what I said and verbal autistics with less complex support needs are NOT the ones missing out on support.

You said my needs are minuscule and insignificant

You needing glasses is the same by your lodgic. You'd cope fine and be willing to give up your glasses and be ok in every day life because there is blind people.

Ok.. sooo why can't the answer be every autistic person receives the support to live their personal and unquie life.

In an ideal world, an autistic person would have their support needs funded if they had no income or savings to pay for that support themselves.

But in the real world there’s a threshold for support being funded. You can have genuine support needs, but if they’re below that threshold you won’t receive any support.

I have genuine support needs because of my autism. But they’re under the threshold of what the government is willing to pay for via benefits. And I can’t pay for support myself because I don’t have the money. So I (and other posters by the sound of it) receive no support. That doesn’t mean our need for support isn’t genuine. It is! But the limited funding (rightly) goes to those with more severe needs, leaving those of us with less severe needs to struggle by ourselves.

It’s the same for people with varying degrees of physical health problems. It is what it is unfortunately.

Because there isn’t enough money to pay for the support that everyone needs. So by your analogy, the government gives the limited money to blind people who have more severe support needs, and people who need glasses just have to cope with not being able to see very well.

I think lots of disabled people are missing support in this country tbf. Just because one group is, doesn't stop another also missing out on it.
I know a lot of autistics, as I went to an autistic school, and theres lots that end up sported by family as they are missing out on that support.
Shitty focernment/country

People with significant support needs pay for their contribution out of regular benefits. They don’t have a top up to pay for it. LAs are so cash strapped now they are taking more money in contributions. It is leading to significant costs & poverty in a group who often have a higher cost of living anyway.

Eh... I was using your analogy... of how you said you needing glasses was less server then being blind....

Just like high and low functioning autism...

That being high functioning needs where insignificant...

So you needing glasses is insignificant and don't deserve support

Don't twist what I said.

People with significant support needs pay for their contribution out of regular benefits
And people with less significant needs don’t get any support at all because they don’t get benefits to pay for it. That doesn’t mean those “less significant needs” aren’t real or important, or that those people aren’t struggling.

I didn’t say that. It’s not my analogy. You’re confusing me with another poster. I’m an autistic woman who also doesn’t receive any support due to being high functioning.

My mistake. I didn't read the username.

That wasn't my analog.. I was just using her analog that she brought up about needing glasses and asking her if shed be ok with what she is saying 'high' functioning should be ok with.

Yes. People with greater needs will need more money and support. Rightly so. But that doesn't mean we don't deserve it to.

So your saying disability benefits should be means tested?