CDC Study of Profound Autism

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We should be aiming to neither stigmatize nor trivialize. If the issue was as black and white as you're suggesting, it would be a lot easier to come to a consistent answer on. I probably won't ever understand the obsession with curing autism when the more I read, the more it appears that autism probably isn't the problem you think it is. It's specific consequences of autistic traits, experiences and/or comorbidities that are. And furthermore, the likelihood of successful treatment and accommodation of those issues is far more likely to actually happen than a cure for autism would.

I do think that it is very short-sighted to encourage a divide in the community when we're all in this together, even if the negative consequences aren't evenly distributed. And, I guess, I'd say especially since the consequences aren't evenly distributed. Folks with higher support-needs need the lower support needs folks more than the other way around. And if y'all can't get us on board with measures to improve your lives, then I have no idea how you expect to get the NTs onboard that have the actual numbers to make this stuff happen.

Admittedly, this is just my view and probably not as informed as it could be, but it reminds me of a former store leader that absolutely refused to give anybody any help if she didn't think that the employee had done enough to not need it. Yes, that was an immature and unprofessional attitude, it's also a common attitude for people in general and skipping the smaller stuff that is more doable makes it harder to get people on board for the larger things, even if the larger things are genuinely the only real options.

TL;DR, I think you're neglecting the middle in a way that makes it hard to really agree with you. I do realize that people do have serious autism related issues. But, I also think that if you make it an all or nothing proposition, that it's not constructive. One of the biggest things I learned from therapy is to recognize that all or nothing thinking is rarely the best option. I just struggle with that because of the ASD traits. But, I aspire not to neglect the middle when I can.

Truth is never stigmatising, it’s just the way it is.

If you’re looking for justification for the profound autism label I suggest you read the NCSA website that explains it all better than I can.

But in summary the only people concerned are those who wish to suppress the truth for their own benefit.

They may use “stigmatising”, what they mean is they don’t want to be associated with. Which is a form of discrimination and ableism.

It was the same when Asperger’s merged with autism. Many aspies at the time moaned they didn’t want to be associated with the “headbangers” as I read.

Same thing going on here.

If approx 30 % of autistics have IQ sub 50 and nearly 45 % adults sub 70 then ID is not an afterthought but a definite part of certain types of autisms that should be recognised.

Mona suggested treating it as ID instead but unfortunately their complex needs go beyond just ID so it was probably not appropriate.

https://www.ncsautism.org/

I don't think we're going to come to an agreement here. You're certainly entitled to your view, but I do worry when people take this sort of black and white view, as it leaves very little wiggle room. And if no treatment for the rather vague ASD diagnosis is forthcoming, then what?

I personally take exception to the idea that I'm suppressing anybody's truth, nothing that I have said isn't informed by both personal experience as well as what I've learned working with licensed therapists. I have paid a price far, far greater than what you're insinuating. But, somehow because I've figured out how to make a silver lining out of it, that I'm being ableist or trivilaizing things? I'd recommend taking a look in the mirror, because it's not like I haven't acknowledge plenty of times that it is tough and some aspects definitely do need a cure if one can be found, I just don't agree that autism in totality is the bogeyman that you do.

I think that it's better to just be honest about the fact that it's not the totality of autism, it's specific traits that are not inherent to the diagnosis and focus attention on that. Given how many of these things are on completely different neural circuits, it doesn't make much sense to act as though solving some of these problems requires solving autism in general. I'm not even sure who I'd be if my wiring weren't so laced with autistic traits.

As for the NCSA, they lack credibility. I'm not sure how such a divisive site that uses language like "mild" with respect to autism and blames the lower support needs people for their problems is a credible source of information. Up until recently there were 0 treatment for most of those lower support needs people, we are due some help figuring out how to navigate the world. (Not that I think there's enough support for higher support needs autistic people, but the unmotivated lower support needs bashing is offensive and unnecessary)

That being said, I stand by my assertion that I wouldn't cure my autism even if I could and that everything I saw listed on the NCSA site could be addressed without a cure ever becoming available.

But, whatever.

My comments are not directed to you specifically or intended to offend, but its clear there are those in the ND movement that want to sugar coat autism and suppress let’s say the more
Unpleasant side of autism to the public to change perception.

Put it simply they don’t want to be associated with those with severe disabilities so the term profound autism is a problem.

They didn’t want to be associated with autism when the spectrum merged because again they didn’t want to be associated with those with greater disability.

Just snobbery, discrimination and plain ableism.

Those with PA have more than low IQ. Many are aggressive, destructive and self harm and have other complex needs so labelling as docile ID or autism with ID was not enough.

I’m sorry if I misunderstood. I just wish that people in general would recognize that there are a lot of options in terms of how this situation is resolved where people's needs are reflected without downplaying or stigmatizing anybody.

I'm also not really sure that a new diagnosis really does much that can't be done with the current sets. Although I definitely think that they went a bit too far in terms of merging things as there is clearly a substantive difference in the needs and experiences of people who can develop the skills to live independently with affordable technology and occasional outside assistance versus those who can't. (Or at least can't with the tools and techniques that currently exist)

I wish there'd be more of a balanced approach in terms of matching up our talents to wider needs and addressing the challenges that come with it in a more targeted fashion. There should be more support for everybody, especially those with greater needs.

As far as the website goes, I'll dig into that a bit more, but seeing what is on the front page doesn't inspire much confidence. I've long gotten frustrated by advocacy groups that engage in unnecessarily inflammatory rhetoric, especially when it turns into a circular firing squad of people firing back at other portions of the community rather than trying to find a set of solutions that might allow everybody their best shot at a great life.

You don't need to apologise your entitled to your opinion as myself mine and that's what this site is for.

Yes i would encourage checking out the NCSA website there is lots of interesting real life stories & facts from the more unfortunate autistics among us.

Have a nice day

https://www.ncsautism.org/

Your statistics may be out of date. See:

- Rate of Autism Without Intellectual Disabilities Is Rising by Emily Sohn, Organization for Autism Research, March 07, 2023.
- The blurred line between autism and intellectual disability by Emily Sohn, Spectrum News, 15 April 2020

latest figures from March 2023 taken from cdc

https://www.ncsautism.org/blog//cdc-aut ... or-1-in-36

The CDC figures are the gold standard stats because they are taken at a fixed point (8 years old) and from multiple data points.

They vary wildly from place to place for some reason New Jersey and N Ireland UK have very high autism rates. Others low rates.

When a single data point is used like NY or data from older newly diagnosed it’s like putting a finger on a weight scale and corrupts the data.

Same principle with ID. Also for undiscovered geniuses previously diagnosed ID there is the borderline category that splits at 18 approx in two half ID other normal range so that’s where I got my approx 45% ID in adults from.

Of course you have to add those with significant Intellectual impairment 70-85 IQ range. I don’t have those figures but I think it’s safe to assume more than half of autistic people are intellectually impaired on a severity scale.

I don’t say these things to be mean or troll but when many are trivialising other people’s suffering and trying to get in the way of research to help them cold hard facts are needed sometimes to counter that malevolent force.

Per usual the vast majority of us, who are somewhere between those who function very well and those who are severely impaired, are regarded and treated like an afterthought. It's as though we don't exist.

Because that's just the hype and thus the 'focus' of the arguments; of those who are very lucky or those who are oh-so-unfortunate.

Don't treat autism because giftedness and contributing to society.
Nevermind their survivor ship bias, nevermind whatever perks they have and being at the right time and place, nevermind anyone else's comorbidities and stupid executive function to a point that I hate the term AuDHD.

Eliminate autism because intellectual disability, 24/7 carers and insurance policies.
Nevermind their agency, nevermind being intellectually disabled itself and blame it all in autism -- which actually causes which, really?
What's exactly profound in profound autism?

I think that's the only damnable arguments being tossed around the separatism while blaming those who were lumped in yet who do not fit there.

Nevermind whatever breakthroughs that may be discovered in any case.

What matters is this damnable consensus -- which is currently who gets more earning power, who gets to yell louder, and which darwinistic argument and claim that "should benefit humanity/families/whatever idea of living is" or "alleviate everyone's problems".

The more reading I did on this whole topic, the more apparent that the people writing the DSM are losing their funding for a very good reason. From what I can tell, the only people who were at all served by these changes even a little bit are the moderately impacted people. Those that are severely impacted, or "minimally" lost the diagnoses that covered that in favor of new criteria that leave a bunch of people out. And it happened at both ends where those that couldn't be diagnosed due to difficulties in assessment, as in high support needs, and those that were atypical autistic don't even have a diagnosis now and the closest equivalents are quite far and don't bring the level of support that was available. Which oddly enough corresponds to the portions of the community with the least ability to fight back. Either because they are diagnosed, but struggle with the actual defense, or because nobody bothered to diagnose us and we didn't even know that there was something going on that would impact the rest of our lives, and likely the lives of any children we have.

Where PDD-NOS and AS were, there's basically ths massive crater and anybody that didn't have a well-established diagnosis just get kicked out of access to any sort of benefits that come with diagnosis. Which is bad, but the proposed solution was social pragmatic communication disorder, and somewhere around a third of the people who needed to be grandfathered in have a diagnosis don't qualify for that.

I have to admit that I was wrong, that studies like this really need to be made as there's a fair number of people out there that are autistic in everything but name and there isn't a different diagnosis that covers us. If I had known that, I definitely would have been a lot less OK with this "broadening" of the spectrum asit's pretty mean spirited to narrow the spectrum while claiming to be widening it and then open up this giant hole because the delays are a bit later, or too much of it is sensory, and not enough of it is repetitive behaviors. And there isn't even an SPCD equivalent that they recognize for those of us that are majorly impacted by that stuff. So, if I didn't numb myself out dissociating at most times that I'm walking around, I'd get hit by a car, but there isn't a diagnosis that covers that at all.

I've not experienced much stigma as an autistic and severely mentally ill person. Taken at face value. No questions asked it. It sounds good. However while I'm open about my issues/difficulties/problems online ' I'm more than a little avoidant IRL. That's narrowed my horizons considerably. It's not the healthiest ways of coping with things ,but it's the only way I know.

Is lumping or splitting best when it comes to autism? If factoring in co-morbidities you can get a huge range of possible groups. I was dxed with Asperger's,but I don't think I'm the same as someone whose testing had them at Asperger's level for both social communication and social interaction.

How best to use finite resources to do the best for the most people possible? It's far easier to ask the question than answer it.

Here is two YouTube examples of individuals with Profound Autism:-

https://www.youtube.com/watch?v=ZoNbREznMZA

https://www.youtube.com/watch?v=j4PTf7LgsIE

Its not just placid ID going on here but usually destructive or self harming behaviour too. It all comes as a package of their particular autism.

There are multiple genes involved in autism, some have one others multiple, others none yet identified, its rather clear that some of these genes where effected cause the symptoms of profound autism.

One interesting thing i recently considered about self harming in some autistics.

Animal protection agencies recognise self harming in animals as a sign of stress and owner abuse, put a dog in a small cage for long enough time and it will start biting its paws, clearly these people with Profound Autism are under severe mental stress they have the urge to get what's in their head out even if involves punching themselves or smashing their head against a wall.

Not sure how anyone can think this is a harmless difference or not a pathology, its no wonder ND advocates are so keen to suppress these kind of things, as they know the truth

Yeah, but I used to self harm when I was a kid pulling my own hair out in large patches until my parents put a stop to it, I doubt very much that I would have been able to stop if my parents hadn't stepped hard on that practice. I still have issues with picking at things, and one of the reasons why I don't self-harm to a more clinicly significant level is that I migrated over to things like acupuncture and TENS massagers that don't carry the same risks of permanent harm. It's hardly just individuals with higher support needs and more severe symptoms that do that.

Which is to say, that it probably does show up more, and more severely in that segment of the autistic community, it's not unique to them, although it probably is harder to address and there's a risk related to implying that it's just a them problem rather than something that occurs all along the spectrum in different forms.

The whole bit about how all autism was defined was pretty screwed up and the more I read into how they decided to redraw the lines, the angrier I get, as it was not done with any sort of meaningful care. You've got the autistic people with the least ability to advocate for themselves being left out cold because the people making the decisions didn't like the numbers of diagnoses being handed out. And not caring that this means that a lot of people are going to get fake diagnoses to account for real symptoms that are no longer considered developmental, even though there are ample signs that it's a brain structure level difference. They didn't want to catch any flack for the more complicated cases so they eliminated over 99% of the ways in which somebody could be classified as autistic, created social pragmatic communication disorder for those that weren't visibly stimming enough, or young enough. And schizoid for those that weren't doing any of this in an obvious enough way early enough and called it good.

To an extent, I do get the point that something needs to be done for the people more affected. I'm concerned that they'll screw this up the same way that they screwed it up the last time where people with similar symptoms at a similar severity level will have one with a diagnosis and one permanently barred from getting the diagnosis. As it stands now, there are a bunch of unnecessary rules that were put in place to basically cut down on the ability of doctors to fix these overlooked autistic people's diagnoses. And that will continue to be an issue as from what I'm reading, there is a massive increase in both suicidal ideation and completed attempts with autistic people with higher IQs, and we got completely shafted in the criteria with no real recourse.

TL;DR, tread carefully with these reclassifications, it can definitely get worse.

"Autism" is a word they created in the 1940`s they initially treated it as one thing with one solution and in a way still do unfortunately.

This is just a result of the fact that brain science is still just not that advanced today and was non existent at the time of Kanner and Asperger when autism was properly identified.

They treated it as one thing for a long time thinking there was one cure out there, but the more they looked at it the more autism became a science subject of its own, a bit like Ophthalmology is the study of medical conditions relating to the eye.

Autism is a symptom of multiple conditions, they all cross over on a Venn diagram with the subjective diagnosis criteria common to all.

This is true, but they had to grandfather people in in order to not kick people off the spectrum and it's likely to get worse over time as the other disorders that they've relied upon the warehouse the patients that are no longer "on" the spectrum increase. If they were doing it on the basis of sound science that would be one thing, but it seems more driven by a lack of interest in having to provide treatment than actual science. Asperger's may well have been somewhat different genetically, and there's a pretty decent chance that social pragmatic communication disorder is a legitimate variation on ASD. And there's been a bunch of people that were classified as being autistic that aren't now, if we go strictly based on the newer criteria.

I definitely do agree that it's rather unlikely that autism is just one thing, but by the same token, there hasn't been much care taken in who is and isn't counted as autistic and there's a bunch of people who are of higher intelligence levels that get screwed because it takes too long for the autistic traits to become apparent, or because too much of it is being expressed internally.

Surely, there's a way of dealing with the situation where everybody can get the help and support they need, rather than basing it on a gerrymandered diagnosis where severity is less important than being able to prove that you had the right combination of traits before going to elementary school, because that's been the status quo for a while now. The older you were when the first traits could be positively identified, the more likely you'd get a personality disorder that understates the level at which the differences are occurring, regardless of the severity of the traits.