Do I strike you as a Level 1 or a Level 2?

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Levels can change depending on the autism, however level 1 tends to be invisible i believe so maybe your level 2

Big hugs, CR.
I'm sorry you're having those issues.

I agree with Daniel about it sometimes being an issue with Interoceptive awareness, which can be addressed by OT. From what you described it doesn't sound like you lack the awareness of when to go. It sounds like you developed an anxiety about it because of your childhood. Sometimes that can mess with our body's ability to function properly over the longterm because bad habits develop in our tummies.

As for it being part of "self-care", I think so long as you aren't consciously deciding not to go, and you don't need someone to physically escort you to a bathroom, you're OK. It could be more a medical or mental health (anxiety) issue at this point than an autism response.

I looked at my ASD report to see where self-care would fit and it's under the category called "Practical" which is under "Adaptive Behaviour", on my assessment anyway. Not everyone gets the same type of assessment but I think this is where it would go. Adaptive Behaviour is a large category involving many other aspects of our daily functioning, and it's only one of many measures they quantified to determine my overall support level. Stuff like crying during meltdowns is normal afaik. I cry all the time but then again I'm Level 2 so I'm not a good comparison.





You definitely could be L2. Lots of us are. ASPartOfMe, DanielW, and a few others are. My point is just that I don't think incontinence would be your deciding factor, especially as you describe it in relation to anxiety like a conditioned response.

Yes. It depends on the type of inc. There was a certain teenage guy on WP (he fled to Aspie Central years ago) who was quite articulate and would seem high functioning from his posts. But he "still had trouble going to the bathroom by himself". He had been in special autism programs since the beginning of his elementary school.

He hasn't been on AF for years.
He went to yet another ASD site as a mod.
Then he vanished.

I miss him.

Thank you for your responses.

All of the straining that I did over those years to get myself to go has caused nerve damage, There are some days that I eat very little because of it.

Have you tried Pelvic rehab?

They can do biofeedback for that.

My doctor hasn't thought about it yet. I'm going to mention it to her.

Good luck!

There was another type of therapist / specialist I saw once or twice.
I can't remember what it was called.
They wanted me to keep journals and records and stuff.
Nope.

Been there done that. Not to the point of incontinence, but I'm extremely bad at telling my physiological needs until they reach an alarming level or I'm lost about why I feel bad. I recently discovered that I need to drink or I get fainting spells if I don't. Pee and poop feel like stomach hurting and hunger is shaking from hypoglycemia. Weird, I know. I don't feel tired either, so I have to remember to take breaks.

I don't think the levels are a good description for everyone on the autism spectrum. I can do everything, it doesn't mean that I don't suffer or that it's easy or that I can "therapy my way out of it". I'm honestly outraged at how prevalent it is to tell people that their issues are just a a matter of feelings and attitude. Socially I don't have issues or with coping with life. My sensory issues are hard to deal with though. I'm hard of hearing, this one is the worst. I don't have any physical issues with my hearing, I just can't hear what people are saying often due to noise that nobody else seems to mind or due to poor acoustics that nobody else minds either. I'm trying to figure out hearing aid, because it's super frustrating. Housekeeping is hard, I would love to get someone to help me clean, but I don't have enough money yet. Or maybe a Roomba robot would be better, honestly. It's that I'm unable to do it, but it's really hard - tiring, time-consuming. I don't feel remotely fine when faced with too much of a lifestyle change - that is the major reason why I got diagnosed. Adaptation disorder and overstimulation sends me into total executive dysfunction. I also have lots of problems with food.

I was diagnosed by a doctor and a therapist, and I don't think they mentioned any level, the doctor said that I have "Asperger's syndrome" which is inconsistent with the levels system.

As for incontinence, I would try to "artificially" remember to go to the toilet at set times such as after getting up, before sleep, before leaving the house, after coming back etc. Routine is the best that I have come up with so far for that kind of issues - that physiological needs reach an alarming level without any warning. Same method with housekeeping - every week, set time and day, don't wait until the mess is urgent.

The levels don't mean that we "can't" do certain things.
They refer to how much support we'd need to do things without distress.

It's written that way for insurance, in case we go top ourselves.
Statistically, we're at very high risk of suicide.

The diagnostician is free of liability if they've identified our need for support.
Higher risk people get levels 2 or 3.

The rest is on us to find someone or something to give that support.
Ideally, we won't all jump off a bridge if we find such a provider.

Also, "support" doesn't need to be from a person.
It can mean noise cancelling headphones, tinted glasses, etc.

If they've told us we need support they'll also give recommendations.
Then their hands are clean of us, and they can't be sued.

Hm, thank you for the explanation. It makes more sense to me if the support need doesn't refer to being able to do things at all, but rather to the level of difficulty. I've been told by two doctors in the past that having Asperger's syndrome or autism (it was long ago) means you you literally can't do some things, not that they're even extremely challenging. I mean, that's extremely unfair, because having a high IQ and understanding doesn't automatically mean anything is easy or that intelligence is all there is to life and health - that is a nonsense concept by itself, but... here it is, being repeated over and over.

It also makes sense that support can mean things such as things to help with sensory issues.

It's awful how it works with getting rid of responsibility.

Levels applied to people are always a bit arbitrary, and they can fluctuate becauseof circumstances. Any expert would put me at level 1, but I can see myself slip into level 2 when I'm unhappy, sick, stressed, or just at random. For example, last month my electricity would have been disconnected if I hadn't been reminded to pay the bill, I completely forgot about an important meeting (which cost me a lot of money) and I've lately attracted attention by talking to myself and rocking on public.

level assignments are strictly to indicate need for support to be used to obtain access to government assistance

it is subjective and depends on the professional/s doing the assessment. The truth is that because autism is neurodevelopmental, each and every one of us will have different development, but it will be uneven and we will all be able to perform some tests or tasks brilliantly and others maybe not at all. Some of us will be on the bad to worse end of performance, but it will all show that our neurologies are uneven . Such assignments of levels do not accurately reflect our strengths and weaknesses in clear ways. Each of us is completely different even though we all show results of uneven development of our neurology. I think I was assigned level 1 but I know with my very poor sensory processing (25th percentile visual ability, 35th percentile auditory) I certainly struggle with many many things that are next to impossible for me to perform (almost anything in "real time" does not work for me). No worries! You are a sweet pea and I value your contributions to this group! <3

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