How would you tell what % of autism a person has?

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If we were talking about a simple and less abstract characteristic, like color in flowers, then yes you could do it that way.

If carnations came in white, or red, and the color were dictated by one gene, and if say, white were dominate. Then you would take your flowers and could declare the white ones to be "100 percent phenotypally white", and the red ones to be "100 phenotypically red". And the white ones that were diploid would also be 100 percent genotypically white, and the white ones that are haploid would be 50 percent genotypical white, and 50 percent genotpically red. And the reds would all be 100 percent genotypically red (since red would be recessive) as well as being phenotypically red.

But autism is a more abstract a trait (its a whole group of behaviors, and not just a color on a petal), and it comes in a spectrum (an autistic can be more or less severely autistic than other autistic). And the evidence is that many genes are involved. We don't yet know how the genes interact. Or the mix of genes that equals "autistic".

Well said. Genes are definitely involved as confirmed by research done for the past few years at Sick Kids which identified 100s of gene markers that correlate directly to ASD.
If genes weren't involved, my kids and my XH's brother (and many ppl in both our extended families) wouldn't have it.

High functioning by which I mean they can handle a day on their own nothing more, AND low functioning to the point that 3 hours or even less being on their own is a life risk for them and need an extraordinary level of support just to survive let alone thrive day to day.

I hate having to explain that every time because of the bitchiness and delusions here and on Twittter about it, especially by those who never met a real level 3 and disabled ASD person at least not with any understanding-- but I do believe in functioning labels ONLY to the extent that it helps government distinguish who is literally going to be dead the following week without help--literally, not from suicide, just from pure autistic things that makes them helpless, so they can help with that, the most urgent cases can actually get some sort of help then (which is still not even CLOSE to enough and their families have to work around the lack of support to let them have somewhat of a humane experience of life).

However, that being said, each case is still individual to be considered on its own as there are way too many other factors, and in that respect I agree that functioning labels can hinder understanding and support.

Right now, here at least, the case is that the level 1 and 2 autistic children get more relevant support and adequate therapy and help than the severe autistics, which is completely immoral.
This is what I see here anyway.

Why, because there's not enough therapists and services that feel 'qualified' to have the right 'skill set' among other things, and also it's easier for them to neglect and abuse severe ASD children. I took my kid to camp, the severe ASD child that he was got PURELY ignored and neglected by camp supervisors who were all qualified professionals, in favour of the 'easier' kids who were able to do everything on their own even if they were disabled in other ways. i MEAN it was inhumane and actually made me see what people's minds are like, no matter how 'helpful' and 'nice' they portray themselves as, they always choose the level 1 ASD children over the level 3 kids when it comes to attention. For example there were moments my kid could have literally gotten injured if I weren;t quick to notice, as the therapists and camp supervisors literally didn't care, they would just sit there allowing it, they seemed to regard him as a nuisance to exist.

Also the things required by severe ASD kids is so expensive, if they were to get even a mediocre level of their needs met, just to sustain an existence which is above neglect, the majority would have to come out of parents' pockets and parents' time and effort, parents would have to be rich like lawyers and CEOs.
END RANT.


Anyway my point is that naturalplastic is right, there are too many factors, and overall each case needs to be considered individually and ongoing check-ins to make sure people are alright. A level 1 ASD person may be going through insurmountable challenges same as a level 3, just at a different sphere, so it's actually very wishy-washy to try and predict. Professionals and parents can only try, we are all human and imperfect, so the sad thing is it will probably never be enough help that any ASD person needs to get by in the same way that NTs can automatically do.


However if you know a person literally needs more help in the moment, and from moment to moment, without which as stated above, they could get injured or die, and certainly not have any range of experiences beyond being treated like an inanimate object-it is immoral, cruel, and disgusting to say a more capable person, while struggling, is just as disabled.
(i'm not going to say my kid, for example, is more disabled than my friend's son who has Cerebral palsy, even though HE doesn't have autism. i acknowledge that in the moment to moment, her son needs more ongoing care and attention)

Last edited by blooiejagwa on 27 Nov 2019, 10:41 am, edited 1 time in total.

I truly feel like "genetics" is relied upon too much.

People refer to "genes" too much---as if they are set in stone.

There are certainly characteristics that are passed on "genetically." No doubt about that.

But one can, definitely, use the environment to offset at least some of the negative traits which have been passed on from parent to child.

Depends on the trait being referred to, doesn't it.

For example my XH has 1 kid in every nuclear unit in his extended family (as well as his own), who is severe ASD and intellectually delayed, to the point they endanger themselves if left momentarily without support, compared to the autistic kids in my family, who can be left for hours and find things to occupy themselves, know to eat and drink when needed. That's a substantial difference in both families.

Also to factor in that the environment is fluid and needs to be maintained as an ongoing thing.

No doubt about that. The environment is "fluid," and must be adapted to.

Of course, there are genetic disorders which are "set in stone."

But there are many more subtle traits which can be "passed down" genetically----but which are not "set in stone."

One example is a person's intelligence. One can be born "intelligent"---but one must make use of the environment in a considerable manner in order to bring that person's intelligence to fruition.

Another is the allegation that "criminality" could be "passed on." There have been many criminals who gave birth to upstanding people.

I have to say that my remarks are usually (including here) written with my experiences/ego at the centre, and cannot be taken as anything more than sharing personal experiences.

Nor do I have as much education or authority to spew my perspective compared to many others here. I do get overcome with emotion and go the other extreme, ironically with the same underlying fallacies as the opinions that I disagree with.


In short, am without humility, except in retrospect.

I understand. I hope you don't think I'm invalidating your experience.

I just run into people all the time who believe "genes" are THE THING. That they are "set in stone."

Sometimes, it's rather like the notion, in India, that one cannot go to a higher caste if born in a lower caste.

Or the way it was in Western Europe when it came to peasants and nobility. It was thought that no peasant can aspire to become a noble----because he/she was born a peasant.

"Genes" tend to be relied on too much when assessing a person. They believe, say, that the son will inevitably become like the father----and treat the son accordingly if the father has negative characteristics.

Last edited by kraftiekortie on 27 Nov 2019, 11:13 am, edited 1 time in total.

Yes put like that, you're coming to my level. lol . I guess what I'm saying is that the ones 'born into low caste' are, much like India esp in the past, are treated as 'untouchables' and whatever access--though still insufficient--that they are able to get in order to slightly advance their caste/experience of life, is through functioning labels and diagnostic criteria.

So my rant was more like, there has to be some point of reference available, with numbers, for them to access any sort of help. To shoot that down the way I've seen being done more and more, in a completely anti-intellectual way, esp on twitter by most 'actuallyautistic' hashtag users--who are so moronic as to fail to take into account that most likely, at least one of the child's parents is autistic of some kind, and treat parents as sort of blasphemers against ASD, and project all sorts of nonsense to discredit their experiences--is to take away the one reliable rung on the ladder that they had to just 'get their heads above the water' and be able to breathe!

There is a Broad Autism Phenotype which is theorized.

I believe in that.

It’s just my luck that there’s no autism in my family—aside from myself.

None in my family either . However my stepdaughter has said my father has quite a fewer similar traits to myself .
If so it didn't stop him having a moderately successful career . Who's who since 1977 or 1978,diplomatic service equivalent of a 1 star General .

To Blooiejagwa: Again, stupid capctha will not allow me to quote your message. It is really pissing me off to no end. But I wanted to respond to your post so I have to do it without quoting you.

What you described at this camp is not only horrifying, it is criminal. It scares me to think that such groups are still abundant in this day and age.

I agree that care and labels have to be much more individually based and assessed on a completely individual basis. I am a level three but I outwardly appear like a level one so on one understands that the things I need support in, even though they might not be as "obvious" and in your face as a typical level three, they can be just as severe and sometimes just as life threatening. When my brain shuts down I can go days without the ability to eat or drink by myself or even at times go to the bathroom. I live alone and when those times come, I just lay in bed for sometimes days at a time and just wait for my brain to regain functioning. The difference with someone like me and someone like your child is that your child needs that kind of help all the time. With me, it is very inconsistent but when those times come, and they can be fairly often, the results can be the same. The difficulty with me is that no one believes that I can ever get that severe. But I can and I do. And often times I cannot even ask for help during those times because I become non verbal. I am also not eligible for respite care where I can be helped during those times. So I agree with you that each person has to be looked at as an individual and each person's needs have to be addressed with therapies and programs that can be tailored to each individual. You should never have to worry about your son/daughter being neglected at a camp or in a program. That should never have to cross your mind at all. I am very sorry that we live in a time where we are so aware and we have so much money and resources and yet we still have to hear stories like yours. It makes me so angry. There is no excuse for it. It is also very sad that people in my situation, and I know several of us, also cannot be helped when we need help because no one believes that we could ever need that kind of help. There needs to be a huge awakening in the whole system so that we can all get the help that we need and deserve.

This is really sad that people treat others like this.

I concur with you with shutdowns, they are terrible, and have had those experiences throughout.
That you even went to describe it is brave, as I know myself I try to tiptoe around it in my mind, as I'm afraid of 'setting it off' just thinking of it.

It is truly horrific. Stating that it's inconsistent is key, makes it worse in a way , as you cannot pre-emptively request help, it just comes on, and help cannot sporadically increase, with the system we have in place.

Ideally care and support would adjust and increase at such moments. Imagine having a button to push with the barest energy left, to ask for someone to come to at least fill a cup of water by your bed so you don't go without, little things only....


--
The blessing for myself, in having a label for kids --is that people are more understanding of shutdowns and willing to help you --putting it down to the rigours of parenting--
when in reality it has been lifelong.

My XH's mom got it right when she used to call me 'dysfunctional and low functioning' to others- I wasn't insulted when I heard about this,
as I thought FINALLY someone who isn't just ignoring or trying to explain it away!

my XH was very kind in all that he did to help with that, even now.

I'm sorry not to be able to respond to you with more suggestions or helpful words, however, I'm so ego-emotion-driven at the moment that I cannot.

I'm trying to improve on that, not just be aware. The more I work on my education the better I will get at looking at the broader picture, not skewed and disproportionately. So that's the type of response you get from an uneducated egotistical person unfortunately.


Thanks for showing outrage at that camp thing...

it was taken as 'run of the mill' standard by my son's therapist, she said all her clients experience such things--

she didn't like it but had given up on people being across the board as alert, hard-working, genuine and caring as she is. This wasn't the first time, but the one that is the easiest illustration of the issue.

There is also outright (hidden from parents) abuse going on with autism or disabled people's caregivers/therapists, which unfortunately my son also experienced from 2 professionals at different times (both fired of course)

Thank goodness for the online world, forums, people like you as well being able to express in writing

as that is a form of speaking up not only for yourself, and for those who cannot do so themselves, as well, Awareness improves things for everyone (hopefully) in the future.

People on Twitter are usually not there for altruistic reasons.

They want to rant about bullcrap, and pretend they are witty.

also seeing as you're female, with hormonal shifts constantly happening throughout one's life month to month year to year decade to decade..., i think shutdowns precede those...at least for me. same with being pregnant, you cannot move and people think you're pretending as theirs wasn't like that.
it's worse for ASD females like that.

How much does an ounce of bullcrap go for today?