Opinions on the levels of ASD?

there really needs to be something done about this, just because you've gotten through 50 years of life undiagnosed doesn't mean you don't require help. an autism diagnosis is often a big revelation and life and can make you notice what you've been dealing with, and that you can get help, you should be able to access proper help. we definitely need a lot less stigma for late diagnosed adults

It is unfortunately quite common for level 1 autistic folks (especially high masking ones) to go "under the radar". I too find it hard to understand how its assessed, I've seen some things on what characteristics determines the level but I feel like majority of people could fit into 2 or more levels

That's interesting, I feel like this mindset/way of going about it is better. I understand levels indicate the amount/type of support people need, but I feel like putting every autistic person into strictly 1, 2, or 3 is more harmful than helpful at times

good to know that it states that they shouldn't be used for determining eligibility for services, that may be helpful

that's unfortunate, i dislike the hurdles that come with level 1 autism

I never really understand all this level thing and how people assess and whatever. I got diagnosed with level 1 autism but in the report it said though I look and communicate normally I do still need support. Unfortunately when I’ve been honest I get taken advantage of ie when I volunteered in a charity shop. I do think likes of me go under the radar though as we are classed as milder and just get shunned off 

In Australia, people diagnosed with level two and three automatically get support, those deemed to be level one have to make a case and be assessed. As far as I know in the UK, the level system is not recognised by health and social services organisations, but need is always assessed individually. Most diagnoses in the UK use the ICD diagnostic manual, which does not have a level of severity system.

I wasn't given a level when I was diagnosed, I was told that I'd lived in the world for 50 years and got on OK, so I could carry on doing so. When I did ask for help there was none to be found, the austic adults group only seemed interested in making sure you had the right benefits and anything else you were just shoved towards another agency, often a totally inappropriate one.

Hi and welcome to the community.

As you might know, severity levels are only given for diagnoses that are made under the DSM diagnostic manual (rather than under the ICD manual).

In defining the criteria for those levels, the DSM also explains that autistic people who have better overall skills (relative to others) might struggle with different or even greater psychosocial challenges. 

It states that the levels should not be used for determining anyone's eligibility for / access to services, and that this can only be assessed / developed at an individual level, based on each autistic person's personal priorities and goals. 

If anyone who has been assessed under the DSM experiences any issues in accessing services due to their level, then they should make the service provider aware that the levels should not be used in that way.

I think it's difficult because there are definitely people that have more support needs than others and how else do you evidence this? But I don't think it's as simple as dividing people into levels. What one person needs support with is very different to another. I work and I live on my own. I'm aware there are many people with autism that this would never be a reality for. But I really struggle with my metal health which I think is very common for those who are classed as level 1 and the appropriate support for this just does not seem to be accessible. I also really struggle socially but again any social support is set up for those with "greater" needs and I can also really struggle to keep on top of things round the house and as I live on my own have zero support with this. But again as I work and do live on my own I therefore do not fit the criteria for any help. I wish they'd change the systems to case by case. I wouldn't need the amount of money something like PIP gives. But somebody to pop in once a week and help me keep on top of things would make a massive difference to my life. Unfortunately, I don't have a high wage job and am paying all the bills by myself so I just don't have the money to pay for help like that myself.

Interestingly, my diagnosis said "Since Autistic experience is a cluster of developmental differences that vary in profile between individuals with different impacts in different contexts, indication of “severity” of Autism is not meaningful and is therefore not given."

It's difficult. Ideally everyone should get everything they need.

But, all non-self-funded support has to be paid for by taxpayers.

There are limited funds. If this has more funds, what gets less? Or are you happy to pay more tax or see vat go up etc.

It's fine to have discussions about priorities. You can also question whether the government spends our money wisely (it is not the governments money, no matter what some may think). But these are subjective and everyone will have a different answer.

Besides some accomodations and self understanding, what additional help do you think should be provided? There is a limit to how much therapy can be made available. And yes it is unfair that some have the ability to do stuff privately, but that also reduces demand on public provision.

You could question more broadly what is going wrong in society generally that is leading to such high demands across the board for mental health services. But this is a bigger item.