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firemonkey
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10 Apr 2025, 4:59 pm

My daughter has done a carer’s assessment. It’s for the autism related adaptive functioning difficulties, rather than for the mental health related issues. She, in no particular order of importance, sorts my medication, takes me to appointments, deals generally with my physical health related matters,collects my weekly grocery shopping - and brings it to me, phones official people like the council/housing association on my behalf, cooks meals for me to put in the freezer.



firemonkey
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11 Apr 2025, 1:46 am

The lack of response speaks volumes, and not in a good way. I genuinely struggle when it comes to defining the level of help and support I get.



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11 Apr 2025, 1:54 am

Level...ummm...Grand Mage/Chaos Knight ?
That sounds like many of the responsibilities I have thrust onto my partner.
It doesn't mean I'm incapable of doing them, just that she does it better.



firemonkey
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11 Apr 2025, 5:19 am

Carbonhalo wrote:
Level...ummm...Grand Mage/Chaos Knight ?



I have no idea who those are.



Mountain Goat
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11 Apr 2025, 6:33 am

Hello Firemonkey. I am not sure what level a level is.



firemonkey
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11 Apr 2025, 6:50 am

Mountain Goat wrote:
Hello Firemonkey. I am not sure what level a level is.


https://behavioral-innovations.com/blog ... r/#level-1


Help and support enables me to maintain independent living.



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11 Apr 2025, 8:50 am

I think you maybe 2 for some things and maybe 1 for others?Just a rough guess.



Edna3362
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11 Apr 2025, 10:03 am

firemonkey wrote:
My daughter has done a carer’s assessment. It’s for the autism related adaptive functioning difficulties, rather than for the mental health related issues. She, in no particular order of importance, sorts my medication, takes me to appointments, deals generally with my physical health related matters,collects my weekly grocery shopping - and brings it to me, phones official people like the council/housing association on my behalf, cooks meals for me to put in the freezer.

Support levels suggests their support need, not as simple as stating what one "can do".

Or, the support one needs to reliably and constantly perform said tasks that they can do as their supposedly performative "good enough" or "best".



Has your daughter shown any external aide, constantly in need of preparation, self accomodation, or complicated/difficult coping strategies to reliably and consistently perform the things you mentioned?

To stay regulated, to stay focus, to be able to know and to immediately execute at right time and place?

IMO that's the main point in getting assessed for autism difficulties.

Unless this is all behavioral based, then the assumption would be a level 0 and nevermind how or what took your daughter to perform just as reliably under the surface, and just completely ignore that she also has a mental illness issue to accomodate to perform at all.


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firemonkey
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11 Apr 2025, 10:20 am

There's a misunderstanding. Completely my fault. My daughter provides support for me, not vice versa.



Edna3362
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11 Apr 2025, 10:25 am

firemonkey wrote:
There's a misunderstanding. Completely my fault. My daughter provides support for me, not vice versa.

Your assessment? My bad.

Hmmm...
If that's the extent you need as support, and if you really couldn't reliably and very consistently do those things yourself, then it does sit around levels 2-3.

Otherwise, it's also something that carers typically do to their elderly wards, autism or not, mental illness or none.


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11 Apr 2025, 2:58 pm

Sorry I didn't respond sooner. I've been tired and distracted lately. Hopefully, you'll get quicker responses in the future. I know I've had good experiences here.

I found this explanation of the levels that explains them as if you were playing a video game: https://embrace-autism.com/levels-of-the-dsm-5/

I just went down the breakdown for myself and still couldn't really define my level. I was diagnosed in my early 40s two years ago, so I'm still learning what the heck is going. Before then, many people had brought up autism and autistic traits to me, but I didn't realize they were talking about me, kind of like in this meme.

Image

I have realizations every week at the least. Like did you know that when people say, "It's great to see you!" they aren't lying to deceive? They're exaggerating they're emotional presentation to help us understand and set the tone for the interaction since we generally have difficulty understanding their subtitles...at least that's my running hypothesis. That's helpful because now my automatic reaction to someone saying that isn't me thinking they're insincere. Anyway, I didn't realize that I was experiencing all these basic differences from the normies, so maybe you're having an experience similar to mine trying to define your level.

You could try asking your daughter go through it and have her tell you what level she thinks you would be. I just asked my friend, and she agreed that I meet everything for level 2, so I just found out right now for this post that I might be level 2 but learned to mask so well that I can pull off a level 1 for some periods if I get enough rest and prep. So yep, gonna deal with that one later.

Moving on, I don't know the standard convention, but if it were up to me, if someone feels they're in between, then I would recommend they go to the lower one since they probably would have a lot of difficulty at the higher level. If you ask your daughter to go through the lists, let me know what she says and what you think about it.


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autisticelders
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11 Apr 2025, 3:05 pm

I think lack of response might be because levels are not well defined and many people have terrible struggles in some ways but do perfectly well in others. We may need a lot of help in some areas and little to no help in many others. I have no idea how that would fit into a level of function and I doubt most other members would know either.

So the assignment of levels of support needed vary with each individual. function levels at time of diagnosis are meant to be guidelines for those who are going to look for help from government or specialty agencies as a way to verify that yes, in some way that person may need assistance. "how much" really is a guess by any professional, and because we are all so different impossible to actually measure and define in very specific ways.

Many elder adults have need of some support and there are many programs available to help. I suspect some of the support level is income based rather than other needs, although I don't think many people would ask for help if it was not needed. I supported my mother (and we still support our disabled daughter) without ever hearing of a level of disability. We stated needs and were able to find help for the struggles she had without being assigned any level of performance or struggle. I am not sure all disabilities or struggles get assigned specific levels. Your question is really a tough one to answer.


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11 Apr 2025, 7:40 pm

I'm not sure if people here are aware, but the level of support needs is supposed to apply separately to the two diagnostic domains of "social communication" and "repetitive, restricted behaviours and interests".

So someone might be, for example, Level 1 in the first and Level 2 in the second.

In practice, because it is so hard to separate out the various facets of our diffculties, and for the purposes of obtaining the relevant support, we normally get lumped under a single Level label (if any).

The best kind of assessment will drill down into the practical difficulties you have in navigating daily life. I'm no expert but I'm guessing with the level of support you are currently needing in day-to-day life, you might come under Level 2.



firemonkey
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11 Apr 2025, 11:00 pm

Firstly I apologise re the lack of 'response' reaction. I get so damned insecure at times. Maybe it's just me, but I struggle when it comes to terms like mildly/moderately/severely, or need some support/substantial support. I was at classical autism level for social communication, but repetitive behaviour etc was deemed to be less severe. It's at a 'do this 150+ times and take note of the mean/median/mode' level.

This is what Grok 3 had to say.

Quote:
You also describe significant **asymmetry in abilities**, with strong cognitive skills but challenges in practical functioning (executive function, organization, daily life tasks). This pattern is sometimes seen in individuals with **twice-exceptionality (2e)**, autism spectrum traits, or other neurodivergences where high intelligence coexists with specific difficulties.



Quote:
Your “clever but stupid” description aligns with what some call asynchronous intelligence—where high cognitive ability in some areas is contrasted by significant struggles in others (e.g., executive function, organization, or daily living skills). This pattern is common in people with giftedness, autism spectrum traits, or specific learning difficulties.



Forums like this,internet participation, those are areas of strength for me. That contrasts strongly with how well I cope/function offline.

The only practical skill I'm OK at is money management. I have 4 figure savings.



KaitEli
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12 Apr 2025, 9:11 am

firemonkey wrote:
My daughter has done a carer’s assessment. It’s for the autism related adaptive functioning difficulties, rather than for the mental health related issues. She, in no particular order of importance, sorts my medication, takes me to appointments, deals generally with my physical health related matters,collects my weekly grocery shopping - and brings it to me, phones official people like the council/housing association on my behalf, cooks meals for me to put in the freezer.

I don't understand what kind of advice you're asking for. Like, do you want to know if she is low, medium or high support needs, or know if she's level 1, 2 or 3?



firemonkey
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12 Apr 2025, 10:44 am

Quote:
A **UK social services carer's assessment** is a free evaluation offered by local councils to determine what support a carer might need. If you regularly care for someone—whether they are ill, elderly, or disabled—you can request this assessment to explore ways to make your life easier.

### What Does It Cover?
During the assessment, a social worker or another professional will discuss how your caring responsibilities affect your **physical and mental health, work, free time, and relationships**. They may suggest support such as:
- **Respite care** (someone to take over caring duties so you can have a break)
- **Help with household tasks** (gardening, cleaning, or taxi fares if you don’t drive)
- **Exercise programs** to relieve stress
- **Training** on safe lifting techniques
- **Access to local support groups** for emotional support

### How to Apply
You can request a carer's assessment by contacting **adult social services** at your local council. If you care for a child, you should reach out to the **children with disabilities department**. The assessment is usually conducted **face-to-face**, but some councils offer phone or online options.



I am not the carer