What is everyone's problem with the ASD Level System?

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munstead
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02 Mar 2022, 8:36 am

AquaineBay wrote:
munstead wrote:
League_Girl wrote:
Joe90 wrote:
I'm not saying people on the mild end of the spectrum don't need support or shouldn't deserve support, but they are the least affected on the spectrum. The reason we don't often get much support is because of lack of funding and government finances, which is why a lot of us mildly affected Aspies have to exaggerate our symptoms to get any support these days. But really, we shouldn't have to exaggerate our symptoms. So anyone here who is mild but gets support by exaggerating their symptoms on the application form aren't cheating the system, it's just that the government only believes that if one can walk, talk, drive, dress themselves, etc, then they are capable of working and don't need any support.

On the other hand, I receive no support, because I feel I don't really need it. The only time I'm going to need some support is if I was out of work or not earning enough money to keep my head above water. All I'll need is an advisor or someone to help me keep on track of looking for work, maybe find jobs for me, although I am capable of doing it myself I still find it daunting and struggle to keep myself on track due to ADHD. But according to the government, stress, anxiety, depression and ADHD are "no excuse" and so they aren't going to be sensitive when it comes to emotional states. According to the government only people with no legs or something like that have an excuse. I'm not saying having physical disabilities like no legs is easy or less of a disability than anything else, but having emotional/developmental problems can actually affect a person's functioning in employment in more complex ways and it should be addressed more.


What support do us level one folks need?

I never needed to exaggerate mine to get any help. I still get my SSDI and I still work for a company that employs people with disabilities.

Are things different in the UK where people with level one ASD are denied disability payment or employment services for those with disabilities?


On the support question, for people on the milder end of the spectrum having a time-limited financial safety net for when we (inevitably?) get sacked or have to resign from a job because it is so difficult is key, with as few questions/hurdles as possible, would help a lot I think. Many even milder autistics struggle with the application forms in the UK and so loads are missing out on financial support when they need it and it would make a real difference to their lives.

Personally, the support that would help the most isn't from government, or at least not directly from government, but from workplaces. More understanding of autism, patience with autism, and workplace accommodations without fear of stigma or reprisals or a subtle sacking would make a huge difference. There are some laws in place in the UK in this area but in practice they make bugger all difference it seems. Need more protection and more incentives to hire and retain autistic staff. Even small changes would help, like quiet areas, low-lit areas, right to WFH. World definitely getting better on these things since pandemic started but still long way to go. Tax breaks for companies that employ X% disabled people, and for companies with more than say 250 employees across all or some rep sample of recognised disability conditions? Some kind of punitive step for high turnover of disabled staff too, to prevent mistreatment and a conveyor belt approach. That would make workplace accommodations more affordable and provide an incentive for hiring. Just some ideas off top of head.


And this is what I mean by unrealistic standards. Say a government were to give tax cuts to companies that hire disabled people, where would the taxes go? Taxes help more than just disabled people, they provide medical services, police force, firefighters, businesses to run in the first place(because of Banks and loans), etc. If you gave buisnesses tax cuts for hiring disabled people what would prevent them from just firing all the other people and taking advantage of these tax cuts? Now a time-limited safety net I will give because we have it in the US and it works but I think it's only 5 years and then you are cut off(if you're making enough money to support yourself.) Then after that you are pretty much treated like any other person if you get fired or lose your job.

Now the one that grates me the most with these "better for disabled people" is accommodations when we get to "quiet-areas" "low-lit areas" and "right to WFH". That is an individual issue that the person who has it has to deal with not the people who hired you. It is up to YOU to do the research and find jobs that fill those conditions for you not the corporations and businesses hiring you. If these places allow for these accommodations then great, you are a lucky person! But, to expect a world to cater to things that aren't "rights" is asking too much. Some places require said things for a reason and wouldn't put them in place if they served no purpose. Some things you just have to file under the category of "Life Sucks" and move on. People that are disabled have to tackle life differently and come up with a compromise just like everyone else. And just like everyone else people ARE going to draw the line somewhere whether you like it or not. Also most places do not have the time or money to invest in understanding disabilities and all that comes with it. Psychologists do that and that's their area of expertise, a buisness would be foolish trying to sink money into something with an undefined amount of time it would take for said thing to succeed.


Hi. Are you OK? You seem a bit angry? Hope all is well with you.

A couple of responses on specific points you make, below.

1. "Say a government were to give tax cuts to companies that hire disabled people, where would the taxes go? Taxes help more than just disabled people, they provide medical services, police force, firefighters, businesses to run in the first place(because of Banks and loans), etc."

So as someone else said, it is a dynamic. You're thinking here in a static framework: less tax (because of tax break) means less gov revenue so that's a bad thing. The dynamic aspect is that the tax break leads to greater employment due to more disabled people being hired, fewer frictions because of no conveyor-belt hiring firing of disabled people which are costly to employers, and as a result there is less need for welfare spending by the government to look after disabled people. So there should be a net gain; a Pareto improvement.

2. "If you gave buisnesses tax cuts for hiring disabled people what would prevent them from just firing all the other people and taking advantage of these tax cuts?"

You've misunderstood the policy proposal. Once the requirement is met, the (say profit) tax break comes into force. So firing non-disabled staff makes no sense and would just reduce your profits and probably end up in a massive loss.

3. "Now the one that grates me the most with these "better for disabled people" is accommodations when we get to "quiet-areas" "low-lit areas" and "right to WFH". That is an individual issue that the person who has it has to deal with not the people who hired you. It is up to YOU to do the research and find jobs that fill those conditions for you not the corporations and businesses hiring you."

Again, you are thinking in a static framework. Minor tweaks to business practices would create more disabled employment, reducing government welfare spending. The tweaks would also increase the productivity of existing disabled workers, clearly offsetting the costs of the minor tweaks being suggested. Good for individuals, good for firms, and because higher productivity means higher profits, more tax revenues for the government.

4. "Also most places do not have the time or money to invest in understanding disabilities and all that comes with it."

See point 3. And it doesn't need to be all places, just enough to achieve the dynamic discussed above. Also, guess what? I had a conversation with work last week and we now have a small quiet area on one floor. I have had my most productive few days in the office for a long time. The area is also being used by NTs that need to do a load of drafting in quiet, so it's benefiting many types. You don't need to throw the baby out with the bathwater here, just small changes which can make a huge difference. These small things won't solve every issue disabled people face, but by themselves result in net benefits.



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02 Mar 2022, 8:59 am

Pieplup

My understanding is this: there are NOT autism severity levels.
There are two SEPARATE diagnostic severity specifiers.

And levels may be below 1.

Details:

https://a4.org.au/dsm5-asd

[ . . . ]

“Specifiers

The severity specifiers (see Table 2) may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that severity may vary by context and fluctuate over time. Severity of social communication difficulties and restricted, repetitive behaviors should be separately rated. The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets. Regarding the specifier "with or without accompanying intellectual impairment," understanding the (often uneven) intellectual profile of a child or adult with autism spectrum disorder is necessary for interpreting diagnostic features. Separate estimates of verbal and nonverbal skills are necessary (e.g., using untimed nonverbal tests to assess potential strengths in individuals with limited language).”

[ . . . ]


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02 Mar 2022, 9:27 am

Mona Pereth wrote:
The usual objection to the level system is that the autism spectrum is not one-dimensional.


I agree with that complaint, but a system without levels would IMHO be worse.
And complicating the system by making it two- or three-dimensional, or incresing the levels to 10, would make it, well, more complicated, so it's a balancing act.
Also, having different names instead of levels, eg Aspergers instead of Autism level 1 complicates it with no, as far as I understand, real benefit

/Mats


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02 Mar 2022, 9:54 am

Mona Pereth wrote:
But the level system is generally considered to be less objectionable than functioning labels, because at least the level system is based on more than just IQ, which is not even relevant to autism per se.

IRL “functioning” is often taken to mean literally the ability to function in society and always has been. Sure there are some autism professionals for whom the dividing line between low and high functioning is an IQ of 70 or average intelligence but as colloquial terms how the terms are used is purely a popularity contest.


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02 Mar 2022, 10:57 am

I'm level 2 myself, my friend is level 1 and there is a clear difference between us in support requirements. I think levels are alright to have, I think peoples issues might be equating levels to functioning capabilities; i.e. high functioning and level 1 or low functioning and level 2 or 3. I mean there is a difference with support needs and functioning isn't there?



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02 Mar 2022, 1:05 pm

It's not just about support or intelligence. A person with low-functioning autism can be better than most people in math or something but they still can be low-functioning. A high-functioning autistic may need support, usually because of co-morbids, like a high-functioning autistic may be held back because of anxiety issues.

No two autistic people of the same level are the same but it still doesn't mean level/functioning doesn't exist. Me and my brother are both level 1/high-functioning Aspies. I have always been more open, expressive, communicative, while he's more withdrawn. Despite that, oddly enough, he's always been better at making friends than me, maybe because my ADHD makes me more socially awkward than high-functioning Asperger's would alone. My brother is extremely sensitive and depressed and hates being touched, hence why he's never had a relationship. I'm in a successful and healthy relationship with an NT man, and I've moved out of my parents house. We are two different people - but we are still both high-functioning.


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02 Mar 2022, 1:20 pm

Fenn wrote:

My understanding is this: there are NOT autism severity levels.
There are two SEPARATE diagnostic severity specifiers.

And levels may be below 1.

Details:

https://a4.org.au/dsm5-asd

[ . . . ]

“Specifiers

The severity specifiers (see Table 2) may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that severity may vary by context and fluctuate over time. Severity of social communication difficulties and restricted, repetitive behaviors should be separately rated. The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets. Regarding the specifier "with or without accompanying intellectual impairment," understanding the (often uneven) intellectual profile of a child or adult with autism spectrum disorder is necessary for interpreting diagnostic features. Separate estimates of verbal and nonverbal skills are necessary (e.g., using untimed nonverbal tests to assess potential strengths in individuals with limited language).”

[ . . . ]




You're right. In the current format of DSM-5 there are two separate specifiers.


My report from 2018 says:

"_______ meets the DSM-5 diagnostic criteria for a diagnosis of Autism Spectrum Disorder - Social Communication Severity Level 2 - Requiring substantial support; Restricted, Repetitive Behaviours Severity Level 2 - Requiring substantial support". (Their bold)

There are "severity" levels and also "support" qualifiers.


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02 Mar 2022, 1:56 pm

Garthilium wrote:
I'm level 2 myself, my friend is level 1 and there is a clear difference between us in support requirements. I think levels are alright to have, I think peoples issues might be equating levels to functioning capabilities; i.e. high functioning and level 1 or low functioning and level 2 or 3. I mean there is a difference with support needs and functioning isn't there?

There is.

Low functioning doesn't equally mean high support maintenance.
And high functioning doesn't equally mean low support maintenance.

There's always about low maintenance high functioning and high maintenance low functioning.

"If you're high functioning, your needs are ignored."
It is usually assumed high functioning also means low support and therefore low maintenance, lower chances of receiving needed support.


It may have to do with the context of what support actually means.

Does it have to do with maintaining daily living and societal contribution?
Maintaining quality of life and human needs?
Maintaining equalizer of attaining milestones and accessibility standard means?
And others...


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02 Mar 2022, 7:01 pm

IsabellaLinton wrote:
You're right. In the current format of DSM-5 there are two separate specifiers.


My report from 2018 says:

"_______ meets the DSM-5 diagnostic criteria for a diagnosis of Autism Spectrum Disorder - Social Communication Severity Level 2 - Requiring substantial support; Restricted, Repetitive Behaviours Severity Level 2 - Requiring substantial support". (Their bold)

There are "severity" levels and also "support" qualifiers.


My son was given a 1 and a 1.5



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04 Mar 2022, 6:01 pm

AquaineBay wrote:
Joe90 wrote:
Quote:
What support do us level one folks need?

I never needed to exaggerate mine to get any help. I still get my SSDI and I still work for a company that employs people with disabilities.

Are things different in the UK where people with level one ASD are denied disability payment or employment services for those with disabilities?


In the UK, if you can walk and talk, then you have to exaggerate your symptoms in order to get any support, if you are lucky enough to get any support at all.

I think I see a pattern here. It seems that WP members from the UK tend to agree more with the functioning label system, while members from the US are more against the functioning label system. Maybe it's something to do with where one is from that makes us view the autism spectrum differently?


That is because if you can communicate well(or at least on an average basis)and participate in social activites then you would not need the ASD label because you wouldn't have it or, it would be pointless to give it to you because you wouldn't need any services that are provided to those with ASD(depending on where you live). Autism at it's core is about your socialization skills and how social activities affect you.

Examples: Missing cues, leaving out information when speaking to people(usually pertains to doctors, police, social workers, etc) how well you communicated with your peers, and these examples have to be consistent and causes a significant problems in your daily life from when you were young all the way up to the end of your life(unless you had help to suppress the disorder enough that you are now able to function in life better.)

Like League_Girl said, what more support do us level 1 folks need? We can't expect the world to adapt to a minority over the majority of people. We also can't expect a whole bunch of agencies to be built for us on the spectrum, that's just unrealistic and too demanding because each person would be different with different set of problems.


Autism causes a lot of issues that aren't specific to communication and social interaction. Ever heard of sensory processing issues? Skill scatter? Executive dysfunction? Motor apraxia?

My social quirks are the least of my problems. I have serious executive dysfunction, to the point where I honestly don't know if I'll ever be able to live independently. Before I got a smartphone, I knew for certain I wouldn't be able to. I struggle with a lot of activities of daily living. The fact that I've got good verbal skills and meh social skills really doesn't reflect what kind of assistance I need in the slightest.

It saddens me to see even autistic people misunderstanding how autism works on such a basic level.



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08 Mar 2022, 10:42 pm

I’m pretty sure I’ve went from a 1 to a 2. I don’t have the guts to confront nobody. I can’t make my own appointments and don’t talk about anything at work but my stupid ideas for animation. I gotta admit I haven’t been mentally well but what exactly defines mentally well. I’m doing nothing but whining to my friends and family whenever I’m feeling bad. My obsessions have been going on for 8 months now and they just won’t get out of my head, I’m even becoming afraid of God and his servants. The whole world is in a bad place right now so I don’t even know why I’m still holding on.


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09 Mar 2022, 5:04 am

Ettina wrote:

I struggle with a lot of activities of daily living. The fact that I've got good verbal skills and meh social skills really doesn't reflect what kind of assistance I need in the slightest.

It saddens me to see even autistic people misunderstanding how autism works on such a basic level.


That's the best description of my own situation I've come across. I have 3 scores listed at https://worldgeniusregistry.org/
. They're all verbal based tests. Like you I struggle with activities of daily living. Without the support I'd really struggle to maintain a healthy level of independence.


That was the case before I moved near my (step ) daughter. I was basically living in a pigsty. That was because I couldn't cope with the organising & planning needed to keep on top of things. I struggle with multi step tasks. My (step)daughter would have a cleaning blitz every 6 months or so she came to visit me. Diet and hygiene were also poor. My social skills were regarded as very poor.

Truth is I should've moved much earlier. My (step) daughter had been urging me to move for over a decade, but I was too anxious/scared about doing so. It took news that they planned to knock my tower block down to persuade me to move. My (step) daughter did everything to make sure moving went as smoothly as possible,

I am very lucky that she has 25 years or so involvement in the caring profession which has included working with those who are autistic/have dementia/mental illness/physical disability/learning disability. She's currently local branch manager of a home care agency.

She spotted that though my verbal skills were good I struggled with practical/technical tasks. That was something mental health services had totally failed to grasp. Failure at Y when good at X was regarded as my being contrary/lazy/passive aggressive etc.

She made things known to mental health services here in Wiltshire before I moved.



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09 Mar 2022, 7:37 am

Your stepdaughter sounds like a godsend. I'm so glad for good people like that.

I have been guest teaching in support of Special Needs instructors at elementary schools and it is lovely (but unfortunately rare) to come across an instructor/caregiver like that.



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09 Mar 2022, 8:13 am

I am very proud of her. This may sound odd but I have been able to say 'I love you' to her and my granddaughters far more easily, and naturally, than I ever have to my birth family. She has said that depending on whom she's with she describes me as dad or stepdad. Some people can be funny about such things.



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09 Mar 2022, 2:45 pm

I get it. :heart:



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