Support vs substantial support?

Post Reply New Topic

I've always had difficulty knowing which applies to me. Having a comorbid schizoaffective/schizophrenia dx doesn't help. Nor does the fact I was assessed as having social communication at classical autism level, and social interaction at Asperger's level. I'm a pensioner now, but when I was of working age I never had a paid job and only did a very small amount of non paid/voluntary work. To me 'substantial support' seems a very vague term. I'm neither a very high achieving autistic person or someone at the opposite end of that spectrum. I'm the kind of person that can do quite well at so called 'high range IQ tests', but, with the exception of money management,struggles with practical tasks of daily living. My daughter was encouraged to do a carer's assessment as a result of the support she provides.

I get help with keeping my flat as clean and tidy as possible. Help and support with medical matters. Help and support dealing with the council,housing association, and other such people.Help with grocery shopping. I order online and my daughter usually,or a granddaughter occasionally, collects it for me.

Someone who needs substantial support probably can't live independently, at least not without significant help. It does seem pretty complex to figure out, though.... there are bADLs (basic actions of daily living) and iADLs (instrumental actions of daily living)




But also, I think that autism levels are not based on bADLs and iADLs? They are based on how debilitating your autism symptoms are..... which, executive dysfunction is a major one. (Executive dysfunction is a broad category including stuff like ability to organize, start tasks, regulate emotions, etc.)

EF, especially organising and planning, is definitely on the deficit side. Prioritising re multistep tasks far from easy. How much that's an ASD or SMI thing I wouldn't like to say. How do you precisely define 'debilitating'? I just know that I don't do as well as the average demographically matched person from the general population.

Should ASD be taken on its own when defining support needs? IMO the answer is a crystal clear 'No!' .

I need substantial support and I live independently.
On top of that I've been a single parent for over 25 years.
I have six pets.

That all sounds great behind the scenes.
What people don't see is that I'm useless.

I have the income to pay for my house (kind of).
That doesn't mean I"m coping or managing.

I need substantial help in all areas.
Do I get that help?
No.

Therefore, I'm reclusive and housebound.
Therefore, I'm in significant debt.
Therefore, I have mental health breakdowns.

I could go on.

{{{{(((( Isabella ))))}}}}}

It's OK Jakki, but thanks.
I wasn't trying to sound pathetic.

I just want people to know it's not about living independently or not.

A person can live independently well, or independently poorly.
I'm rather on the poorly side, compared to NTs at least.

My self-care is really bad.
I don't know how to fix anything.
I have no EF.

I pay people to do everything.
I have financial planners, psychologists, OTs, etc.
I can't afford it but I have no choice.

How I wish it could be the case.

I only kept seeing bADLs that needs some sort of specialization or a specific designation of being a caretaker -- and iADLs are basically just homemaking that is a shared task around the household...

I can do them all alone except 'maintaining communication' (it's always the first thing I'd forget, even not do due to language processing issues and the social gauging of not knowing the whens and how much is too much)...

In fact it's the only thing that my family (or anyone) can actually try and accomodate me with.

Where does this place me for having only that 'one' need?

I think those terms are pretty vague and subjective. It is my understanding that they were put in place as part of diagnosis so that people who need help can have some sort of documentation "on the record" that they need help or assistance. The more we struggle, the higher our number.

Doctors /diagnosing professionals get to make up their minds how impaired we are. The objection many people have to this rating system is that it doesn't show how some of us can have extremely high test scores in some areas and really dismal, poor performance in others.


The terms "high functioning, low functioning, severely impaired," were not used because they were thought to be stigmatizing.

Just as the Aspergers term was also put under the rating of autism 1.

The rating system used when we get our diagnosis is changing, just as the ways Doctors/ professionals who diagnose are changing the way they diagnose.

This is due to science learning more about the nature of autism itself. Knowing today that autism is neurodevelopmental instead of learned behavior or deliberate misbehavior due to abuse and neglect (as science once believed) has changed the way we work with and understand autism as well as other neurodevelopmental struggles and diagnoses. We've come a long way.

Doctors don't always keep up with new information, many are still using diagnostic criteria that was developed for 8 year old boys over 30 years ago, and have not added information to update to current understanding. Like all medicine and psychology, things keep changing, we all keep learning.

I expect when the new DSM comes out eventually, things will show changes again. Its a poor system, but way way better than what we all experienced in, say, the 1970s or 1980s when the oldest doctors working today were educated.

Prior to moving to be near my daughter I was,as I'm doing now , living independently. The difference being there wasn't regular support, and I had spiralled into an increasing state of self neglect. As you rightly say living independently doesn't necessarily mean living in a good and healthy way. The psychiatric and social care system here in the UK is such that a major crisis has to occur before you get much in the way of much needed help and support. Family support close at hand can make a significantly positive difference. Unfortunately not everyone who's struggling,but not in major crisis mode , has such support.

I feel you on that. Money also changes a lot, I think, like getting someone to clean, bring groceries, buying takeout food...