Question about severe autism

Factual Questions
1

I was reading this thread about what happens to adults with autism, and I found myself so confused. I know there’s not one kind of autism, it’s a spectrum, but maybe I was all wrong about what autism means, because I thought it mostly pertained to people being able to communicate effectively or not wanting to be touched, but otherwise being of more or less average intelligence. But some of the severe behaviors described in this thread – not being potty-trained, destructive, can’t read, entirely or almost entirely non-verbal, can’t make food, can only perform simple tasks – sound so severe that it sounds to me like mental retardation.

So I don’t understand. How is it determined that some of these people with these severe developmental setbacks are autistic and not mentally retarded?

2

That has been an issue now for many years, as we have learned more and more about ASDs. That is also an offered explanation for the dramatic increase in diagnosed ASDs over the past 20 years: those who were diagnosed with mental retardation in the 80s and 90s are now being diagnosed with severe autism. In the past 20 years, the DSM definitions of ASDs have been refined and genetic studies have demonstrated inheritable ASDs and ASD-type behavior. All of that has helped better define ASDs and mental retardation, but in the beginning, retardation was defined by behavior and observed deficits in ignorance of genetic, structural or biochemical causes.

We are beginning to understand that mentally retarded people with ASDs are a subset of the larger autistic spectrum, rather than being part of a group defined by Fragile X, Trisomy 13, Rett’s or mitochondrial disease (each of which could be arguably placed in their own group). As we learn more about the genetics and epigenetics of ASDs, we may further separate ASD type mental retardation from others, or find unexpected links or similarities.

3

The core features of autism are qualitatively impaired socialization; impaired verbal and nonverbal communication; and restricted and repetitive patterns of behavior, interests, and activities. By definition children are impaired before age three in at least one of social interaction, language used in social communication, and symbolic or imaginative play.

You can have an IQ very below normal and not have the impaired socialization, not have communication any more impaired than all other streams, and not be at all restricted in patterns of behavior, play, or interests. And you can have those things and have a normal or above IQ. Of those with classic autism about two thirds also have mental retardation, but one third have IQs in the normal range or above. Those who do have normal or above IQs tend to have a wide scatter on their subtests. Function is still often impaired not only by the features of autism but by the subareas that are low, even when the global score is normal or above.

Yes, as we have appreciated more about the spectrum of autism, more who had previously been just labelled as “delayed” and odd, or even as just odd, are now being labelled to have autism.

4

Also remember that the problems severely autistic people have to deal often make self-care close to impossible. They may have a high capacity for learning (persumably an average or above-average IQ), but they are so handicapped by overwhelming sensory overload and the coping mechanisms they’ve develop to handle it (like stimming), that they cannot attend to other matters.

You don’t have to be autistic to be in this situation. Schizophrenics can become so disorganized and withdrawn that they also appear to be mentally retarded (mute, physically immobile or hyperactive, inattentive, unresponsive, unable to dress or toilet themselves, etc.) People won’t call such a person mentally retarded because they’ll remember how smart or functional they were before they became ill; also they can “snap out of it” given the right cocktail of drugs or with enough passage of time. Now imagine if this is how you enter the world. You may be aware of the world and be smart enough to figure out things, but the stranglehold that autism has on you keeps you from being able to show it.

It is hard to tell if a smart kid is “locked-in” an autistic brain, or if they are mentally retarded and autistic. I suspect that’s why so much emphasis is placed on early intervention, and why it is so heart-wrenching for parents when they are told to give up on their profoundly handicapped child.

5

Another way to visualize it is to say that what gets called “mental retardation” is the global delay of development whereas autism is a particular distortion of development that may or may not also be associated with more global delays.

6

Does mental retardation ever get diagnosed as an ASD simply for the parents’ benefit? Do doctors prefer to tell parents that their child is autistic because it doesn’t have the same stigma as retardation?

7

My understanding is that it used to be the opposite; those with autism were diagnosed with mental retardation as there were more services available to mentally handicapped people and their families than to those with autism. At that time, no one really knew how to address the deficits seen in autism.

8

I personally know of no bias to autism as being perceived as less awful than mental retardation, if anything the opposite.

9

Is Aspergers a subset of autism?

10

Most have thought of it as such and the soon to be released DSM 5 officially classifies it as such. But not without some controversy.

11

There’s some co-morbidity with mental retardation, but the autism and its behaviors can make it very difficult to get any reasonable reading of intelligence.

An intelligence test is, after all, not a perfect reading of the mind’s power - it’s more accurate to say it’s a reading of how well you demonstrate the power. So a low score might mean you’ve got less native intelligence, or it might mean you see no reason to play the game this stranger is asking you to play.

Anyway - autism is a disorder of impaired social interaction. The more impaired the person is, the less communicative they are, the less likely they are to care about destroying things, the less likely they are to care about toileting issues, the less likely they are to learn to speak (at all, or appropriately), there’s less impulse control, they don’t bother to (or can’t learn self-help skills etc.

Autism is a neurological disorder - and as such, it’s quite reasonable to think that there is an intelligence impairment as well (brain doesn’t work well in area A, it might not work so well in area B either).

My son is high-functioning. Normal intelligence, gets decent grades in school (albeit with some support), interacts verbally though with some hesitation.

My nephew is mid-functioning, I’d say - he did not speak independently until he went into intensive speech therapy at 2. Now, he speaks, but not perfectly, and he rambles about inappropriate topics and does not converse normally. He’s not violent though he uses a lot of violent imagery in how he speaks e.g. “I’ll cut you!”. His intelligence is supposedly “low normal” but of course functionally he’s quite “retarded”.

We know a little girl (10 or so) who is nearly nonverbal. She is, however, very calculated in getting what she wants - e.g. climbs out windows when denied a particular outing; recently she was at our house and clearly wanted to run out the back door, but saw that we were looking at her. She waited until she could see that nobody was looking, then bolted. I think of that as “craftiness” rather than true intelligence. She’d never get a decent score on an IQ test.

12

Yes, many autistic individuals who are severely impaired in communication develop impressive compensatory skills to get what they want. I worked with a preschool boy trying to teach him receptive language for months without progress. The problem was he could easily figure out how to “game the system” by learning what card he was expected to point to in order to get reinforcement. If you changed the stimuli (aka substituted an actual book and an actual shoe and asked him to touch shoe), he failed every time. Until, of course, he learned how to game that particular system.

The problem with asking if autistic individuals are mentally retarded is that you get into questions of the definition of intelligence. Is someone who can’t speak and can’t understand speech retarded? Now what about if that same person can put together a complex puzzle in record time? With the autistic we often see “splinter skills,” whereas the conventionally MR tend to have abilities more in line with a certain developmental level.