... to share this explanation of the Autism spectrum

[KihoBebiluPute]

This isn't a thread-about-a-thread but I wrote a version of the below in response to another thread that then got deleted before I could post it. I think it's useful information so thought I would start a new thread that isn't about one particular person but just general info.

Posting in AIBU because the original thread was here though.

The Autism spectrum isn't a line from "mild" to "severe" - it's like there's a colour wheel, and each person's symptoms are like a different cut-out shape across different sections of this wheel, so no two people with autism have exactly the same issues to contend with. There isn't a "mild" end of the spectrum which is almost the same as being a neurotypical person - NT people are not even on the same colour wheel at all. Terms like "mild" and "severe" are really unhelpful because they tend to refer to how much the issue is perceived by a neurotypical person. Someone can have a particular issue quite severely in terms of how much stress and difficulty it causes them, but may mask the issue. Obviously some people have much more significant challenges than others and may have additional conditions as well as the ASD, but people who are able to function to some extent in society don't have a less intense type of the condition, they are just affected in a different way.

But there doesn’t need to be an opposite, there could be those classed as low functioning and remove the term high functioning altogether. Those who are low functioning will be severely disabled and no amount of terminology will change that, others may or may not have severe disabilities. I do not see why improving understanding for those whose severity is not recognised should come from removing the language of those whose autism is obviously severe.

The intention was to demonstrate that a 'high functioning' autistic can have just as shit of a life as a 'low functioning' autistic.

@Boulshired

Because resources are so tightly rationed that some autistic people receive no care or support.

We're fighting over scraps.

I suspect that some of these people with autism who insist on speaking for everyone else with autism (and the people who care for them) may have issues that prevent them from seeing how inappropriate their dogma is.
Whether that in itself is related to their autism or whether it’s something else (you don’t have to have autism to be inappropriate) is hard to say.

Nobody is denying that people with high daily care requirements need help, but those who can roughly attend to their activities of daily living are deemed not to need anything at all. And they're expected to work and arrange a roof over their heads.

@Coronawireless, wow, patronising much.

I'm not trying to speak for everyone, just trying to provide some insight.

I recognise that that might make some people feel uncomfortable.

It only becomes a problem when these loud voices of people who have had an education and are earning and living in their own homes try to divert funding from people who have no hope of ever providing financially for themselves.

Autistic people are not permitted to have a voice or express an opinion? We have to be meek and humble and defer to those with more experienc?

Sleepwhenimdead it might be the Spectrum Star, or other Outcome Stars, that you have seen OTs use. Spectrum star rates 9 areas (physical health, living and self care, well being and self esteem, sensory differences, communication, social skills, relationships, socially responsible behaviour, time and activities) out of 5 (1 being major barrier, 5 choice and self reliant). Each area is broken down in to further questions to arrive at the rating.

I suspect that some of these people with autism who insist on speaking for everyone else with autism (and the people who care for them) may have issues that prevent them from seeing how inappropriate their dogma is.

I think that's quite condescending, I'll be honest. You don't have to be the person who struggles the most in the world with autism in order to have a valid perspective and contribute to a discussion.

It only becomes a problem when these loud voices of people who have had an education and are earning and living in their own homes try to divert funding from people who have no hope of ever providing financially for themselves.

You've got no idea if that's the case for anyone on here, though.

A fundamental misunderstanding of autism then.

How many autistic people who need help are struggling to work?

I realise I sounded rude there, and I apologise. I hear what you’re saying about autism causing a lot of difficulties. But as someone who has close contact with a very severely disabled child who will never achieve independence or have a family or even real friends of his own, I can’t see how a degree of differentiation can be denied.

I only have a roof over my head out of sheer luck. I guess I should stfu and stop seeking help for my severe depression then, because I can take a shower by myself after all.

Sorry, it is rated 1 to 10, not 1-5.

But as someone who has close contact with a very severely disabled child who will never achieve independence or have a family or even real friends of his own, I can’t see how a degree of differentiation can be denied.

I think people are disagreeing specifically with the terminology and ethics of "low functioning" vs "high functioning", rather than any kind of differentiation. I don't take any personal offense to the 3 levels of autism, providing they're not linked to the functioning labels.

@pleasefeedthecat

A fundamental misunderstanding of autism then.

How many autistic people who need help are struggling to work?

Anyone who struggles to work deserves financial help. But some pps have said that they have a job, family etc, yet still try to say there is no difference in “severity” between them and people who have no chance of either.

@pleasefeedthecat

I only have a roof over my head out of sheer luck. I guess I should stfu and stop seeking help for my severe depression then, because I can take a shower by myself after all.

Everyone with depression should seek help, with or without autism. I’m sorry if you have suffered. Saying there are different degrees of disability doesn’t mean a lack of sympathy towards people with any level of difficulty.

@Coronawireless

I have a son with aspergers, but there is a great deal of doubt as to whether he'll cope independently or be able to work. He can shower, brush his teeth and knows all about the Byzantine Empire in the nth century, but that means little in terms of coping with adult life.

He'll probably live with dh and I until we're dead. There is no other family. Who will care for him? Where will he live? In a hostel? On the street? Who knows.

Is my youngest son severely affected? Would he deserve help?

@pleasefeedthecat

Is my youngest son severely affected? Would he deserve help?

Yes, if he can’t live independently he would need help.

Thank you op, I sent the cartoon version to DH and DD and they both loved it and felt it was a much better explanation of who they are

There is levels of autism 1,2,3.
My DS was high cognitive functioning and ASD along with ADHD he'd be level 3.
My neighbours DC is non verbal and has no interest in anything around her she will be fully dependent on her parents for life likewise my nephew has level 1 no awareness of danger or society whereas when DS meltdowns are under control he'll have an independent life hopefully.

Yes, if he can’t live independently he would need help.

In your view, is the capacity for independent living what differentiates severely autistic individuals from the rest of the autistic community? Not trying to be goady, just asking.

I guess somebody with high care needs gets a roof over their head and food. This is potentially more than my two dcs will get. These are the type of people who kill themselves. Extreme? Maybe, but it happens and this is what I think about at 4am every morning.