What is moderate autism ?

Post Reply New Topic

And how is it different from LFA & HFA ?

Kindly advise. Thank you !

I think it is the level II severity rating for the DSM V. I have no idea how it maps to the DSM 4 criteria, or to the way it had been applied. We were diagnosed prior to the new DSM and never got a new diagnosis to reflect the new DSM.

Here is the info for severity levels under DSM V: (I will bold Level II)

Level 1
"Requiring support”

Social communication
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Level 2
"Requiring substantial support”

Social communication
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.

Restricted, repetitive behaviors
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.

Level 3
"Requiring very substantial support”

Social communication
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches

Restricted, repetitive behaviors
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

Edited to add: They revised the DSM to strip out intellectual functioning components b/c they had nothing to do with autism. That part made sense. That said, as I re-read these criteria, I honestly have no idea where we fall b/c I do not think it accounts well for people with scattered skills. I don't see how these severity levels will help anyone who doesn't fall nice and neatly and evenly into them. You still have to take individual strengths and weaknesses into account, and so to me these categories are just as meaningless as the old ones.

(/gets off soapbox)

Last edited by ASDMommyASDKid on 06 May 2014, 7:27 am, edited 1 time in total.

In common layperson usage; high-functioning usually refers to someone with fluent verbal skills, low-functioning refers to someone with very limited or no verbal skills and medium is a mushy term that may refer to people in between.

The DSM-V describes autism in three levels:
http://www.autismspeaks.org/what-autism ... c-criteria
At the bottom there's a table of the three levels.

The levels are a shorthand to help describe people more quickly and accurately since "autism" can describe many very different people.

It's important with diagnostic labels in psychology; not to take them too literally. Just because someone has put someone in a box doesn't mean that we fully understand the dimmensions of the box. Autism represents one label that is used to describe a very complex series of disorders that look similar in terms of their symptoms. Likewise, the levels are vague approximations intended to help be a little more specific.

These categories were also problematic because in real life it is way more complicated than that and high verbal ability does not equate to less severe. It sets people up to have too high demands for some kids and too low expectations for others.

The problem is it is really hard to describe it all with one easy phrase. They probably should have separate ratings for different abilities, but that isn't going to be nice, neat and simple verbiage.

I am confused because not only can children have scattered skills, but also the individuals' behaviors may change from day to day. That, I feel, is the most difficult part of coping with my son's autism. He seems to be very well behaved, compliant and happy on some days, and a holy terror on others.

Also, he does not use a single word at almost 5 years old. It is hard to say how much he really understands as he does not speak or communicate. So, as far as language skills go, he is at the very bottom of the spectrum. And since language heavily influences / impacts social abilities, he is sorely lacking there, too. Hearing / exposure to a lot of language overwhelms him and he seeks to avoid that experience by avoiding individuals who use language -- which is pretty much most of the species ! !

I also wonder how they are implementing it in terms of support. Do they categorize assistance like aides, devices, accommodations etc into these categories? Let's say a person "tests" at Level 1 based on the aggregate information, but he needs assistance that is grouped in level 1 or level 2 support categories. Does he get re-categorized; or are they just told they do not get the needed support for that splinter skill b/c they are level 1?

I assume part of the reason for these designations is it is supposed to be easier to plug and play support. I don't see how that is possible based on broad categories.

It seems to me that the lines between the different categories are fuzzy and will vary from clinician to clinician. In my mind, I've met or know of a few kids who I would guess are considered moderate rather than mild or severe. Two are younger siblings of acquaintances who have boys my son's age who also have Aspergers. In these cases, it's clear the language is much more impaired than their older brothers was at the same age. They do speak in full sentences, but need prompting to do so and it's not conversational. Both moms are having trouble finding the right school program -- they can't participate at all in a mainstream preschool/kindergarten, where the older brothers were learning in that setting except for having too many meltdowns and behavior issues. And in the low functioning classrooms the school district has them in the goals are set way too low (like matching shapes) and they are passing them easily, but the teachers are not pushing the language development nor moving on to academic work like learning their letters. One tried my son's Asperger school for a month, but was the youngest of all the kids and was not interacting with the rest at all.

There was another kid who had a trial placement at my son's school. He was capable of doing grade level academics, but didn't engage in conversations at all and was physically attacking the other kids out of the blue all the time (I guess his way of trying to engage them.)

There was a kid I saw occasionally in a waiting room who would just monologue constantly to no one in particular. Very high verbal ability, it didn't seem to be a script (or was a very complex one), but no real interaction going on. Not sure if he would be considered mild or moderate, but to me he definitely seemed qualitatively more impaired than my son.

There is one kid I know who is considered severe -- completely non-verbal at age 8 and starting to learn to communicate via pictures on an iPad, doesn't seem to have any identifiable special interests, but his mom says he listens to and understands everything that is said around him.

They started calling my younger son "moderate-severe" when he was 10, before then he was just "severe" (on the old system). The only thing that changed markedly when he was 10 was his language skills. Prior to 10, he was considered functionally non-verbal, after 10 he was considered functionally verbal. The other main thing that is different between him and my older son (who is considered "severe") is that he sometimes initiates interaction whereas my older son does not. He watches people, he sometimes makes some eye contact, he will take your hand to take you to what he wants, etc. Whereas my older son doesn't watch people, doesn't make any attempt to communicate, etc. So that's what I've observed from my non-expert POV.

Edit: As for accomodation, I don't think my kids' schools base it on the category. The only time it has ever come up is in an evaluation. At school, they base what services they need on what services they need (that makes sense!!). Both of my kids have a 1:1 aide at school. On the new diagnostic criteria, I assume my younger son would be a 2.5 (can he be a 2.5?) but I haven't been told.

Don't know if I can add anything. "Moderate" is where my daughter started and "high functioning" is where she is now. It is hard for me to account for the major differences because she was also 2 when she was "moderate" and is 8 now, so some of it is natural maturation, but I will try to share with you the general "feel" I have regarding how she has changed. For me, it is not just simply a matter of change in language skills.

It is more a change in...how to explain...even for awhile after she started gaining language skills, she had to be prompted for almost everything. I had to keep a close eye on her because she had a high potential for wandering or escaping, but I don't think it was necessarily intentional on her part, it was either due to sensory reactions or being lost in her own imagination. She was more quick to retreat into herself. She actually would become so disconnected when overwhelmed that she would sometimes fall asleep wherever she was...the playground, the classroom, wherever. She often did not respond to her name or to anything around her.

As she became "higher functioning," she became less prompt dependent and more...in this world...though that's not exactly what I mean to say. For example, when she was more "moderate" if she saw a butterfly, she would become completely absorbed and I swear she would have wandered a mile away chasing it before she became aware that she no longer knew where she was. Now that she is "higher functioning" she is much more aware of her surroundings. She might still see a butterfly and want to follow it, but she will only do it while she can still see where I am or while she still knows where she is.

When she was more "moderate" she seemed more quick to lose her connection to the rest of the world. A perfect example was one time when I dropped her off at the first day of summer camp (the summer before kindergarten), I "left" but really stayed behind to watch her from where she couldn't see me. She had been at the camp in previous years and I knew she was no longer going to have support in kindergarten so I wanted to see how she would function. She had a 1:1 at camp still, but she wasn't there yet, so I thought it would help me see both how she was going to handle things and also how the staff was going to handle her.

Anyway, the teacher said "it's carpet time!" And all the other kids started running to the front of the room where the carpet was. She froze. Her whole classroom in school was carpeted, so she had no idea what the teacher meant. She did not notice the other kids going in the other direction or look for anyone to help her. She just stopped. Like a statue. Withdrawn into herself as she was overstimulated and did not understand the expectations (I wanted so badly to go and help her!) After all of the kids sat down (less stimulation and commotion), she was able to "come out of herself" enough to realize the other kids were on the other end of the room. So she walked over there and spied the tiniest space in the carpet to sit on. She stepped her foot into it, realized there was not enough room to sit. Stepped out. Stared at the space. Stepped back in. Stepped out. Started to flap. Stared at the space. Pranced. Flapped. Stepped in. Flapped. Stared. Stepped out. By this time, everyone was saying "there's more room in the front" but she could not even hear them because she was so focused on the one solution she thought she saw. It wasn't until someone physically touched her and pointed to the other spot in front that she was able to get there. At this point, I would have considered her somewhere in the "moderate to high functioning" area of the spectrum. When she was just "moderate" this whole thing would have caused a meltdown. At this time, her verbal skills were also on par with her peers, so that is why I think it is more than simple verbal abilities.

Now that she is "high functioning" she still has issues with situations in which she does not have a ready-made script to follow or when what she expects to happen does not happen (she cannot always think and problem-solve flexibly in real-time), but more often than not, it results in a delayed reaction or response, but after a few moments, she is able to "look to see what your peers are doing" (which is what we taught her to do--reference peers) and then she will proceed, albeit delayed.

I don't know if this adds clarity or makes things more confusing. And I do want to remind you that I have two friends who's kid/grandkid did not speak until 5, and they are both doing very well now. There is no magic age (I know you know these things...but I also bet you hear plenty of negative things IRL, so I want to counterbalance it).

Ha! And now having declared my daughter "high functioning" (which she is) I just spent the past 55 minutes dealing with a rather major meltdown over lines of symmetry. A stark reminder that "high functioning" and "generally flies under the radar" does not mean unimpaired. And during that 55 minutes, she probably would not have appeared "high functioning" to your casual observer, and no one would mistake her behavior as that of a simply "quirky" kid.

Not that I want to take away from your question. However, it does add credibility to the people who question whether or not the distinction is useful (I usually believe it is, but at times like this, I'm not so sure).

I have a question, folks.

How do self-help / self-care skills factor into the "level" of autism ? For instance, if an individual has ZERO language but good self-help / self-care skills and minimal behavior challenges, would they be considered "moderate functioning" ? What if such a person also had poor academic skills ?

InThisTogether, thank you for the detailed post. I deeply appreciate it.

For clarification, do you mean zero LANGUAGE or zero COMMUNICATION? I ask because I can imagine having no language, but having decent self-help/self-care skills and minimal behavior issues, but I have a hard time conceptualizing having no communication, but having minimal behavior issues. I think a lot of behavior issues are due to an inability to communicate and I cannot imagine how someone would be functioning enough to take care of themselves and not feel utterly frustrated by the inability to communicate. Having needs and wants unrecognized by others seems like it would have to be frustrating.

But I think someone with impaired communication skills would be better able to really address that as I am simply trying to imagine, but cannot really understand because I have never been in those shoes.

Well, if someone has good self-help / self-care skills, then the inability to communicate wouldn't really be that big a deal, right ? I think communication impairments can lead to behavioral problems IF the individual couldn't help themselves and hence needed others to somehow figure out what it is they needed ? For example, if I could make myself a snack and entertain myself by putting on the TV to my favorite channel, would I really care if no one seemed to understand me or if I couldn't get someone to understand what I wanted / needed ? Or if I wandered away from home but had the skills to figure my way back, would I really need to be able to communicate to someone that I am lost t? (Men and asking for directions, for instance ! ! )

If I was hurt or needed medical attention, then I am sure others would figure that out by seeing me in pain or feeling my forehead to detect that I had a fever -- just like parents can always understand when a baby is sick or a pet parent can figure out if the pet needs medical attention, without the baby or the pet really communicating that need ?

Not sure...but I do like that it looks like you are challenging your assumptions and seeking to see things from outside of the box. While I may not be sure about the question you posed, I am sure that you actively challenging assumptions and looking for alternate perspectives will be of great benefit to your son.

I don't understand ? I am honestly wondering where a person with excellent self-help / self-care skills, moderate problem solving skills, but zero communications skills would fit. My son may or may not, eventually, fit this profile, but I actually do know of someone who closely does, albeit he has some communication abilities, mostly via pointing, and gestures.

@hismom,
high and low functioning are concepts that have always been tied to IQ, the severity of autism isnt strictly to do with functioning although people with mild autism cannot be low functioning by definition but moderately autistic people and severely autistic people can be found in the high functioning and low functioning range.

high functioning autism is when a person has an iq over seventy, this IQ gives them a different presentation of autism.
low functioning autism is when a person has an iq under seventy,this IQ gives us a different presentation of autism.

both low and high functioning autism are spectrums as IQs differ widely and ontop of IQ differences,the autism can cause complex needs which makes the autism present differently or worser for some people, this is also why some HFAs can appear more low functioning because they have more complex needs.

have got to go for a hospital appointment now so cannot write anymore but if need anymore help just ask.