Profound autism: is it always truly classical autism?

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Those children and young adults who're so profoundly autistic that their parents and relatives say they hardly learn anything, how can anyone be sure they have kanner's autism/autistic disorder/infantile autism?

I thought this was what the category of atypical autism is for. No, actually I'm absolutely sure that's the only right diagnosis for such.

If someone so severely impaired due to autism and severe MR, then symptoms of the MR and symptoms of other disorders (from physical to allergies, many parents report of a long list of multiple disorders and disabilities their child has on top on autism) are most likely mistaken as symptoms of autism. How is that acceptable?

You can't diagnose deaf or mute children into classical autism on basis of their language delay. And you're not supposed to diagnose AD(H)D on basis of a PDD because it's 'too hard to figure out which symptom is caused by what' usually.

Yet professional (in the US?) seem to diagnose autistic disorder nonetheless. Because it's okay to just go and assume that probably all symptoms stem from autism rather than from co-morbid condition.

It should be atypical autism for those who have several disorders that mimic or worsen autistic symptoms.

Especially if their seemingly 'autistic' symptoms disappear if you treat their co-morbids. You can't know that before, of course, so playing safe would be to diagnose them as atypically autistic. If several 'autistic' symptoms disappear by treating co-morbid condition, these obviously these never were symptoms of their PDD but of these other disorders you managed with (or helped your child manage with) successfully.

Which is good for them, but it gives people all the wrong idea about the untreatable symptoms that stem from lifelong PDDs and not from disorders you can actually treat.

Many of those who are ignored because they are able to learn to varying degrees experience the real symptoms. The type of PDD symptoms that don't go away. They don't suddenly wake up after some fancy treatment and can engage in reciprocal interaction can read faces at all and such. That's why they have a PDD right. Life-long pervasive disability that doesn't change with your functioning-level and that doesn't 'go away' even if you found a successful copying mechanism.

This is like being alcoholic. Once you are, you'll always be, even if you never drink alcohol again for the rest of your life. If you have it, you have it and it'll never change even if you are doing great.

That confusion about symptoms of autism and symptoms of co-morbid including such as MR seems to be prominent across the spectrum.

Think of anxiety and AS; anxiety can lead to that your autistic impairment is mistaken as present or as much more severe than it is. If your anxiety is treated and you start to look people in the eye or engage in simple conversations, you suddenly appear less autistic. In truth, your social issues that are now gone never were caused by your PDD but by your co-morbid anxiety.

If a profoundly autistic person suddenly improves in reacting to simple requests and questions (nodding, pointing) for example due to treating a co-morbid condition then quite obviously, their co-morbid is where much of the seemingly autistic symptom came from.

And if you can't tell whether not being able to, say, be potty trained or being unable to talk or the inability to do seemingly simple everyday tasks such as washing, cleaning and such come from their autism or their MR, then I don't understand why it's perfectly fine to go around saying it's 'all due to the autism' instead of saying 'well my kid is moderately to severely mentally ret*d and has autism to a degree we can't figure out because obviously we can't tell apart whether or not all criteria of autism are met due to autism or due to MR'.

There's nothing shameful about mental retardation. I hate how people react totally vile and ignorant towards even just mildly mentally ret*d people.

I began to wonder if the stigma attached to MR is still much bigger than that to 'profound autism'.

It seems to me it is.

I hear people talking of 'morons' and 'imbeciles' when they hear about a mildly MR kid but they don't say such things when they hear someone talking about an autistic child. If the same were said about an autistic person I think it would drive people up the walls. But somehow it's perfectly acceptable to insult those who have LDs and MR.

Autism and its associated MR isn't the same as normal MR.

It's known that the greater the level of MR, the more Autistic someone is; most nonverbal adults are profoundly MR, and it's been this way since the beginning.

Lots of nonverbal adults are not profound MR at all. In fact, they are simply untestable thanks to communication problems.

I assume everybody knows that autism can interfere with testing so much that the result is MR though said person's abilities that do not fit these of non-autistic people with the same degree of MR.


Furthermore I don't see how having a PDD makes you exempt from having that type of MR that's not a result of your communication and language deficits but rather causes them as much as your PDD does.

MR can cause speech delays, repetitive mannerisms without these people being the least autistic on top of having some degree of MR.

And I did talk about only the most profound cases of which there aren't a lot but very very few.

Why would only non-autistic people without co-morbid condition have profound MR that's not caused by autism?

The most profound cases often have some element of physical illness involved; for example, many of them have severe, uncontrolled seizures; many were preemies or had complicated deliveries; many have conditions like Rett syndrome, chromosomal abnormalities, or prenatal exposure to alcohol and drugs. If you guys read Autism Hub blogs, there are several parents whose kids have autism in addition to other severe physical and neurological conditions, and those are often also the kids whose autism affects them most. I don't know whether the autism is just some part of a larger picture for those kids, or whether they happened to have lots of physical problems coincidentally and that made it much harder to learn; but either way, the connection does seem to hold true for many.

I do think it's still correct to call those cases "autism", just like it's correct to call cases of Down's or Fragile X "developmental delay", even though there are more factors than just that one involved in those conditions. Autism probably has multiple causes and multiple genes involved in those causes. It's so diverse that it almost has to.

I think atypical autism is rightfully a part of autism. I only ever heard people talking of autistic people when they referred to those with atypical autism.

I do however not think it's okay to be incorrect and imprecise about symptoms because that is spreading lots of confusion.

What annoys me about the whole thing is that often times people will say the autism is the main thing, and everything else is caused by the autism. Like, if you've got a kid with autism and celiac, they'll say the celiac disease is part of the autism, caused by autism, and if you cure the celiac you've cured part of the autism... I mean, obviously that's nonsensical, but multiple conditions in one person aren't all "autism" just because one of them is, or even because they are more likely to co-occur. I've heard a couple people say their kid's "autism" improved when what really happened was they found a medication to get the kid's seizures under control, for example.

It is extremely difficult to measure the IQ of someone who is severely autistic. I was first diagnosed as being severely ret*d, and after my mom fought tooth and nail for a different kind of IQ test for nonverbal children, my IQ "increased" dramatically to 85. It was eventually discovered that I was autistic. Even today, my I.Q. is all over the spectrum. Many people today consider me some kind of genius even though I'm nonverbal in many situations. I can only imagine what it is like for people like Sharisa Kochmeister who has many other conditions beside autism. She is completely nonverbal and yet holds an advanced college degree. I have to wonder what efforts were made to reach and teach people like us before we are labeled ret*d.

Part of the "autistic people are hopelessly nonfunctional" myth is definitely the fact that all the other co-morbid conditions are considered a part of autism. In addition to being autistic, I am claustrophobic and have migraine headaches. One of these migraine headaches caused me to have a seizure. My medical alert tag and medical ID card specifically states ALL of my conditions (including my claustrophobia), and yet, my attempt to escape the ambulance was attributed to me being autistic instead of my claustrophobia. When I was taken to the CT scan room, the technician who did the scan talked to me almost like I was ret*d. I figure that she must have been trained that way. I wonder if I catch pneumonia if it would be blamed on an immune system compromised by autism. There is more to my physical body than autism.

Lots doesn't equate to most.

This has been studied in-depth for the past 50 or so years, and most that are nonverbal as adults do have profound MR on standardized testing. It's just the facts. That recent study done with the Raven Matrices is flawed as the majority of the individuals in the study had "HFA".

This is truly nonverbal, i.e., no speech at all, and squealing type noises is all they produce. Those who have echolalia or limited speech as an adult, have a higher IQ, usually moderate to mild MR.

We just don't know how many of them have skills they can't show. We don't know whether it's just "lots", or whether it really is "most".

And you have to remember that IQ is often times quite meaningless for autistic people. I'm "only" Asperger's, and I still have such a large gap between my highest and lowest scores that my overall IQ doesn't say much about me at all. The only reason people know I am not mentally ret*d is that I have a big vocabulary and I'm good at school. If those two factors were taken out, they'd assume mild MR immediately. (And that, in fact, is where I function in daily life--with exceptions for strengths).

These kinds of highly specialized skills--some of which are not even measurable on most or all IQ tests--are very common. One low skill can mask a lot of other high skills--and suddenly, when you accommodate for that, the other high skills start showing up. You see a version of the same thing when you test kids with learning disability, short-term memory problems, etc. Somebody could be getting failing grades in school because he has dyslexia--which doesn't impair his ability to learn science or history, but prevents him from getting the information on science and history into his head in the first place. Accommodate for the dyslexia--some version of auditory teaching plus extra reading lessons--and suddenly he's showing his true skills in the other areas.

Autism's like that. You may be able to say that some non-verbal people "really" have high IQs, but I bet those IQs are even more meaningless to them than mine is to me. If these people are like the average autistic person (admittedly, somewhat of an oxymoron), then they'll have similar skill profiles--scattered all over the place, undefinable by an overall IQ even if it could be properly measured. The only thing I could safely say about someone who doesn't use language is that he's bad at using language.

You can't make assumptions about autistic people, and you can't categorize them by their IQ scores. You have to take them on a case by case basis. If you're a professional, you have to find out what they're good at, what they're bad at, and what you can do to help them free up the strengths. I get extra time on tests because I have inefficient working memory, slow processing speed, and impaired concentration. I also get lessons in how to improve organization, to create external order so that I'll be able to work with what I've got. Otherwise, those things would hold me back and not let me show off my skills on other areas. A lot of the teaching you do with autistic people is to grab hold of what they're good at doing, whatever it is, and use it.

Some autistic people are less independent than others. Some need more help. I'm not denying that. I'm just really leery of assuming that you could put autistic people in boxes at all, even if you could somehow measure their "true" IQ.

Callista, you are spot-on in your analysis. I would also go as far as to say that the measurement of IQ and similar scores is just as meaningless at the higher-functioning end as at the lower end. Autistic characteristics vary in intensity, so that even people with extremely high IQs can have very strong autistic tendencies and a major disparity between their strong and weak points. Back in the dark ages (OK, the '60s) during my kindergarten year, I was considered "ret*d" by my school. By year two I was several grade levels advanced in mathematics and reading, and today routinely test more than four standard deviations above average on professionally-administered IQ tests. I can visualise and mentally manipulate even complex systemic things very easily as well as identify and apply patterns, can remember long strings of numbers through the magic of number-form synaesthesia, and I am generally quite verbally proficient (not to mention pedantic); therefore, IQ tests measure a profile of abilities lying squarely in my strength zone.

However, every day has its night, and there are many other areas, not captured in these assessments, where life is a mighty struggle. My disparity in abilities tends toward the extreme. Just switching from learning by reading to learning by listening degrades my performance immensely. Similarly, I can respond to the most complex questions if they are asked specifically, but any request for a "free form" response, where I need to organise information I know without a specific context or question generally results in frustration and futility, with any progress I eventually make being excruciatingly slow. And it gets worst - IQ tests don't pick up that I have no clue how I feel at any given moment, but it makes non-superficial relationships more than a little bit challenging. I have never had a "functional IQ" assessment, but can imagine that the results of such an exercise would probably be quite sobering.