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

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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?

^^ Joe, that would be interesting if that pattern is general. I would like that people simply received the support they needed at that time, for that area.

My diagnosis was simply ASD with no level, but I was told verbally I would be considered Level 1 mostly and Level 2 some. Is that Level 1¼ or 1½? Recently I've had a lot of situations I feel Level 2ish. But it's not like I'm going to be assigned a person to help me navigate impatient clerks, police officers, teachers, doctors, administrative folks etc. Although that would be VERY useful and would save me much grief and trauma. Sometimes my (NT) husband is around to step in for tricky interactions.

I wish there were more support for ASD adults (not!), and co-morbid conditions. My therapist suggests I have my audio processing assessed, but it's only available in my area when paid privately (and it's very costly). Where's that list of hacks to mitigate sensory overload for adults? I would love some language assistance. Although I can't figure out how much I want to/can change myself versus be myself.

IMO It's the binary way in which functioning levels are applied that's the problem. A multi faceted, dimensional approach covering strengths and weaknesses would be far better. It should also include how you do when stress levels are low vs ultra stressed.

It's a very interesting question, thank you for asking it.

I was not aware of the Level system (I am from the UK so maybe that is the explanation).

I know that many do get upset or slightly irritated by the 'high functioning' designation, which seems sort of similar to the Level 1 but it also seems there would be differences in terms of implied need or provided support? For example, I would probably fit into the 'high functioning' bucket but I receive no support from the government or my workplace, but I go to great lengths to do the things that I do, and I suffer as a consequence, and I also suffer from anxiety and depression waves and these are sometimes debilitating. The one part of the 'high functioning' label that grates with me is that (to me at least) it implies that I am fully independent and so should be ignored. But it is entirely possible that I endure greater emotional, mental, and physical pain by having no support and trying to get by than someone that is less 'high functioning' that receives support. So the Level system seems better on this basis, but I'm not sure I would be given any support under either classification approach with the state of public finances in the UK at the moment.

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.

Also to those that include stuff like stress, anxiety, and depression, "Neurotypical" people experience all of those things as well as other's with other types of disabilities. WHY you are experiencing those things would better indicate an autism diagnosis than simply experiencing them(not diminishing anyones struggles just giving insight into how autism works and is diagnosed).

I’m 59-years-old and am semi-retired. Don’t like being semi-retired, but just don’t know if I have the energy to do it all over again.

I typically work extremely hard at a job, over-work myself (the job won’t love me back!), and then give two weeks notice and quit the right way. With a plan of getting training and onto another type of job. But training DOESN’T ALWAYS led to a job.

I wish a really good book had given me advice when younger of how to half-ass a job frankly, and also had to look for a job when you already have one, which I’ve never really been able to do.

Good post. I think this captures a lot of the issues I have with my autism and am sure many others do as well. I get into a similar repeat cycle: because I am masking and preparing so much to function in my job to a level that means I won't get sacked that I get burned out and suffer hugely. If it was possible to half-ass a job as you say that would be great, but for me I would get sacked I think if I put in any less effort than i do now. In our system in the UK I the logical fall-back for me is to 'give in' to my autism, stop fighting and being outside my comfort zone, and do a lesser job and have a benefits top up. financially i'd be slightly worse off but in terms of wellbeing i might be up quite a bit.

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.

Please remember, I was saying I wish there was a book which gave advice on how to artfully half-ass.

It's never really worked for me either.

When I sold for the chain of boutique mattress stores (I don't wish to give the name of the chain), I thought product knowledge of the different mattress brands was the centrality. And then how to use the computerized payment system (almost all by check or credit card), the separate inventory system . . . the schedule of upcoming sales promotionals. Well, I kind of wished I would have phased back on the product knowledge and ramped up to the B+ level on these? ? Well, yeah, maybe.

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.

^^ AquaineBay, it's a dynamic. It's for a person to the best of their ability (or disability) and for the company to the best of its ability (or not). Both/and rather than either/or. To your point, many or most companies don't have or don't want this, but there are pockets within companies and companies themselves that do. I wish it were easier to find them. Thirty years into my worklife and I have plenty of examples ranging from a schizophrenic employee at a hotel (government subsidized) and a blind engineer at an aeronautical company, and a dozen in between. Those individuals did their part and the companies did theirs. That makes a good relationship, a good community, a good world. To your point, that's not ubiquitous (at all, but I liked the word so used it).

And the tax breaks could even be pretty modest, just enough to get the ball rolling and to remind companies, Hey, persons with a disability, esp persons on the spectrum, have a lot to offer. And we’re supposed to be about labor specialization anyway! (and not just about insisting in unimaginative fashion that all employees act the same)

My favorite solution is probably Universal Income — for every single adult, rich and poor alike. Paid for by a tax on Wall Street and similar. In fact, the prime benefit might be slowing down the casino economy built on top of the real economy.

Second best might be reform of overtime laws.

Here in the U.S., if someone makes more than $35,000 and supervises or works in professional capacity, the company can classify them as salaried. And perhaps work them 60 hours week (often suggesting to the employee that if only he or she were better organized, the job would be more like 40 hours! I mean, what a con job. Or, I think the more modern term is gaslighting)

Obviously, I’d like to see this $35,000 threshold raised way up, through a series of medium steps, of course.

Other countries may be way ahead of the U.S. in this regard by insisting that corporations inside their borders use flextime or similar. With the effect being that when there’s 120 hours of work to be done, that is typically three jobs and not just two.

The "functioning labels" don't indicate what accommodations are needed. For example, "functioning labels" don't indicate whether a person has sensory issues and, if so, what they are or how severe they are. "Functioning labels" were based on IQ, which is not even one of the defining traits of autism per se.

Where are you running into these people?

You are unlikely to run into people like this on Wrong Planet. Also I personally haven't run into anyone like this on Twitter either. Occasionally I run into people who have objections to the level system, but I have not yet run into anyone in the autistic community who bashes individual autistic people for stating their diagnosis.

The usual objection to the level system is that the autism spectrum is not one-dimensional. For example, one person might have severe sensory sensitivities and be unable to make eye contact without great discomfort, but have no difficulty following a conversation. Another person might have great difficulty following an informal conversation involving more than two people, but not have sensory sensitivities.

Thus the level system, like functioning labels, is not specific enough to indicate the person's actual needs.

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.

I agree. The number on its own doesn't mean much, but the report which accompanies it will give other specific levels.

I have Level 2 overall which might not be very descriptive (or prescriptive), but within my report I'm also scored in every area including executive function, sensory processing disorder, adaptive function, social skills, mental health, etc. Those are defined by percentile or TScores, and by qualifiers like "Extremely Low", "Requires Significant Support", or "At Significant Clinical Risk", etc.

I don't go around carrying my report but if I was seeking support in one of those areas, I'd be able to pass along the data and anecdotal comments as descriptors.

Example - This is part of my report showing my Adaptive Functioning abilities.
This combined with the written information would show support personnel where I'm having difficulty:



It's just one of my subcategories on my report, and each is very useful when demonstrating my needs.

^I've never had a thorough assessment like that , although it was obvious that something wasn't quite right. A week into my 1st admission I was told I was going to do therapy making dolls' houses. I was in a bad state. Even things I was normally OK at I'd been struggling with. I had zero aptitude for building things. I freaked out and and was pulled from the path of a hospital bus

Cue a pdoc telling me I was an 'awkward and troublesome teenager'. There was no attempt to find out why I'd reacted so strongly. That was a missed opportunity early on to take a thorough look into things.to;provide a proper level of help and support.It then became a case of repeated criticism because I could do x well but not y.