Anyone else surprised by their ASD "level" diagnosis?

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I have a cleaner who comes in twice a week. My stepdaughter or one of my granddaughters comes to GP appointments etc with me . My stepdaughter takes me shopping and guides me round the aisles . I can use the washing machine , but need help to hang the washing on the clothes horse. My stepdaughter deals with any practical matters that may crop up . I'll bathe and shower most days , but sometimes my stepdaughter will point out that my t shirt or trousers need changing, my hair needs brushing etc.
If I wanted to go anywhere outside of the small area I know someone would have to come with me . I'm not good at taking oral meds(Kemadin and Omeprazole). My stepdaughter arranged for them to be put in weekly dosette boxes , even so I still forget to take them sometimes(though less frequently than before) .

They weren't doing severity levels when I was diagnosed, but I asked them and they said from all the numbers they had I would be about halfway between NT and the maximum possible Aspergers score. I wasn't surprised, I'm capable of surviving independently as long as I keep up the effort. There's probably a lot of things NTs can do relatively easily that are so much more of a struggle for me that it's just not worth the pain and effort, but so far they've only been "luxury" things.

I know an Aspie who has a proper severity level on her diagnosis and the difference between us is very real - she's often in need of help managing her finances and making realistic decisions to manage her home. I can't remember her exact level, I think it's one below the worst one. She gets welfare payments, they accept she's not able to work for a living, which is probably correct, she has a therapist which she probably needs, and her mother occasionally has to bail her out of whatever mess she's got into. Certainly if her ASD were any worse, I doubt she'd survive outside of a care home environment. Meanwhile I managed to hold down a job, I benefit from (but don't absolutely need) the occasional session with a therapist, I can manage my finances etc. I run my own home - it's no palace inside but it's not a public health problem and in the areas where it matters, it's comfortable enough.

So all in all, I think the levels are about right in both my case and hers.

Hi this is my first post. I was diagnosed with autism two years ago aged 63. I was told that under the previous DSM 4, I would have been diagnosed with Asperger Syndrome but as it’s now DSM V, I was told it’s high functioning autism lol! I’m still trying to come to terms with my diagnosis because of the different mental health diagnosis in the past and because I’ve never thought of myself as autistic and neither did anyone else.

Welcome to Wrong Planet.

I'm level 2. Sometimes I'm not sure if that is accurate, because when I'm doing ok, have supports in place (which are, admittedly, very significant), and am supported in having helpful routines etc., my sensory issues and burnout feel far less intense. But as soon as those supports reduce or are less than completely consistent, I no longer doubt it.

I mask reasonably well if I have those supports, but it all falls apart quickly.

Oh yes, I think the specific environment can make a complete mockery of these levels. The severe ASD case I know did brilliantly at high school, without any special help at all, not even a diagnosis, but crashed and burned at university, simply because of the appalling deterioration of conditions from an Aspie perspective. Her mother and the support services had to practically move heaven and earth to get her through it in one piece.

Those last two posts are me exactly.

I read online: "Level 1 with support ASD is not noticeable to casual observer. Level 2 with support ASD is noticeable to casual observer. Level 3 ASD severely impairs daily life."

This is weird b/c all humans need support relative to their role in the community. A hermit doesn't need much at all if any. A president needs a whole bunch and sometimes gets her/his own Cabinet. NTs often "notice" ASDs are different whether or not there is support.

For me it all comes down to stress level.
* less stress = less noticeable, less support required
* more stress = more noticeable, more support required

Has does one define "normal" stress and consider what "normal" support would be?

I plan to obtain diagnosis within 6 months. I would have initially self-reported that I would barely make Level 1, but now with more awareness I think that Level 1 is a given for me, plus some. I have naturally incorporated "support" into my life, e.g. therapists, advisors, friends and now a husband who does errands. It's such a part of how I operate that it's normal for me. Since I get support myself does that mean I don't need support? I think generally people would simply say I am unusual. When my stress peaks, my behavior is noticeable to the casual observer. How much so --- I'd need to ask the casual observer.

If somebody has a puzzle to solve, I am the one to provide support.

An interesting perspective to me is that you look like you could be at or nearing the age when NTs would need the same level of support as you do. I would say you are doing quite well.

I'm 62. I'm not senile yet. I do check periodically with the Food for the brain cognitive test . It says I perform at or above the norm for my age .

Thing is, i'm essentially a hermit with a lot of support. Without support I forget to eat, drink, shower, have difficulty getting basic jobs done.

I think the extent to which it's observable is based on slightly outdated notions of autism, whereas it's recognised more and more that the impact is primarily on the individual. I don't look very autistic, but trust me, it runs deep, and it prevents me from reaching anything near basic expectation for my life stage.

Forgive me for implying there is "less" absolute need. I was exploring the relative need. It's generally easier to see the physical analogy than the mental (e.g. EF) analogy. Let me try this: I have a distant cousin who is physically disabled. In terms of absolute needs, she doesn't have to be spoon fed or need a gastric feeding tube, so one would probably say she doesn't need "very substantial" support. So it's the line for "substantial" support which especially confuses me - in part it's relative to her environment, accommodations and what's considered a reasonable need. As a "hermit" she doesn't need much support at all (beyond her established level), but if she wanted to do more for herself or leave the house, she'd need a whole bunch of support (especially in her third world country where there are few accommodations for differently abled). I could apply the analogy to my EF and social function - not being spoon fed, but somewhere out from there.

I remember when in 4th grade the teacher declared the classroom door was North, and I knew it wasn't, but couldn't explain it and later I walked through it to demonstrate and still everyone kept telling me it was North and I cried and cried and cried (and this is before I was informed that the earth's magnetic poles move). These ASD levels feel the same way. It's only North if you are standing in this place at this time. It's not just North.

I think EF deficits are something that the general public often doesn't see as being disabling . The lazy/passive aggressive/ etc labels can be aimed at a person when the actual problem is EF deficits .

Yes. I have been told "you just don't want to" by my otherwise educated and caring NT father as I tried to explain poor EF. And the truth in it is that when I FOCUS on something I can generally do it (to the exclusion of everything else). I made food and exercise my Special Interest for 6 mos and did quite well, but then other things needed attention (like providing shelter) and the phase was over. So I CAN do it. Similarly a person without arms could get a bowl from the top shelf of pantry, but it would be much easier if the bowls were kept lower (accommodation), or the person had prosthetics (tools), or a helper (social support)... One would be less likely to argue that the person is lazy (s/he CAN do it her/himself without support) or that they don't need a bowl; one might suggest that the supports are nice but not necessary.

I write and write about this b/c I am still unclear that I could explain it to anyone (in person). I need cards to hand out to people: EF card, SPD card, ASD card, etc.

I was honestly surprised by my diagnosis saying I was at L2. I've lived alone and with others, can take care of myself, have held down moderately complex jobs in multiple industries, sometimes for over a decade and with promotions and interstate moves involved, can drive, have a number of industry certifications, etc etc.

Yet apparently I need assistance. Well... OK, sure, whatever you say, but in that case where do I find such assistance, and what exactly are they going to assist me with?

That's what annoys me about the ASD criteria. What if at the present time there is no "support"? Does that mean that nobody is on the spectrum? I guess I will find out in a few months.

I just got to the section in Guide to Asperger's that suggested for children with poor EF that the parent provide support (be the "executive") and then suggested to continue it until the child reached adulthood at which point support would be provided by a spouse. I think it was a joke, but true. It did not mention if one doesn't have a spouse, or one has a spouse with worse EF. Ah, well.