These are my notes from a two-hour presentation I did for a local support group in my area. These are my own personal comments from my personal experiences and the experiences which have been related to me by others. They do not necessarily apply to your own child

From FEAT

DSM-4 Criteria for Autistic Disorder and Pervasive Developmental Disorder, Not Otherwise Specified (PDD NOS)

To be diagnosed with autistic disorder at least one sign (each) from parts A, B, and C must be present plus at least six overall. Those meeting fewer criteria are diagnosable as PDD NOS.

A. Qualitative impairments in reciprocal social interaction:

1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction.

Eye contact - when a person is speaking, I look at that person’s mouth. Now I have learned about eye contact, so most times I compromise and try to look at the nose. Looking directly into the eyes is very uncomfortable for me, sometimes even makes my skin crawl. Also, I prefer to look at the mouth because the mouth is what is speaking, it is moving. Therefore it allows me to focus on what the person is saying, rather than having my attention wander. If I am looking at the speaker’s eyes, I will soon start to think of other things like the color and size of the eyes, wondering what the person is thinking about me, and other things. But if I am focusing my attention on the mouth which is doing the moving and speaking, then it is much easier to pay attention to the person. It is important to teach some measure of eye contact, because it does allow for a better relationship in social situations, especially police situations. People expect that someone who is not looking into their eyes, is either not paying attention to the speaker or is lying, which is an important consideration in police encounters.

Facial expression - most facial expression is communicated through the eyes, see my comments above. If I am not looking into the eyes, it makes it more difficult to determine facial and other similar non-verbal cues. I generally have an automatic "smile" on my face, which is generally socially appropriate for most situations. But because mine is an automatic reaction and I realize that, it is hard for me to know if YOUR smile is also automatic, or if it is an actual display of the emotion of happiness. This also applies to the "straight face" and even the frown, because if my automatic reaction is a straight face or a frown, I may not know if your straight face or frown is similar to mine, basically an expression of neutrality, or if it really is a "straight" expression, or an expression of dissatisfaction or unhappiness.

Body posture - similar to notes above, I am not looking at your body, so posture is difficult to interpret. Also, I will stand too close or not close enough, because I am looking at your mouth. It helps me to use the "arm distance" measure, I will stand about as far away from you as if I was holding out my arm in your direction and would put my fingers just touching you. That seems to be the appropriate distance for most situations.

Gestures - similar to notes above, plus some of my own gestures are automatic responses, I don’t really know what they mean, but "everyone else does it", so some of them are modified stims, to look appropriate, but I use them for a different reason than the "typical" reason, so I don’t know why they are done by others.

2. Failure to develop peer relationships appropriate to developmental level.

I don’t seem to share the interests of peers, so it is not really desirable in many cases to develop relationships with them. Also they may tease me because I am different, so it is easier and safer for me to be alone. It is also difficult to talk with them, because my interests are different than theirs, so we have not much in common to talk about. I may tend to always be the talker, which can turn off peers, or I may always just listen, which is also not conducive to a peer relationship.

One specific example is the social story of how to approach a peer and initiate conversation. Most children are taught to approach, tap on the shoulder, and then have a conversation introduction such as "Hi, I am Susie, what is your name?" or "Can I play with you?" This needs to be practiced with children who will be "nice" to me tho. If I try this approach with a child in general, more than likely because of my "reputation" as being different, that child will tell me "no I don’t want to play with you". So what I have learned is that your way does not work.

There needs to be social stories and other instruction on how to react when faced with disappointment, rejection, or even mistreatment. What do I do if the other child says "no"? What about if the other child teases me or throws something at me? These things must usually be specifically taught, something specific to say and do.

I don’t like the unexpected, so I want a response that will work if a situation occurs which I have not experienced before. Some sort of reply or action that I can do that is relatively safe, so even if I am surprised and I freeze, I still have SOMETHING I can do to get myself out of the situation. Then practice with me in a "safe" setting until I can do it without much thought.

3. Lack of spontaneous seeking to share enjoyment, interests, or achievements with others.

Similar to the information above, most other children don’t like what I want to do anyway. Many times I don’t really care if anyone else likes it, I like it and I want to continue doing it. This is not necessarily a bad thing though, why should I conform to what others want if it is not what I want? Another thing is why should I seek out others to share things with, if they are always rejecting me. If I need them for validation of my activities and thoughts, and they always reject me, that is bad for my self-esteem. It is better for me to stay away from them.

4. Lack of socioemotional reciprocity.

Some people have an easier time understanding the emotions of other people, and others don’t. Many people do not know what would be the "appropriate" emotion to show, some are over-emotional, others are under-emotional. For me, I generally "freeze" when I know I should have an emotion. Often I do have an emotion but I have difficulty knowing exactly what it is. I just have this vague general feeling, and it can take quite a while for it to solidify into something which I can identify.

I will use the current events example of airplanes crashing into tall buildings. I could watch the replay of those events all day long, every day. I thought it was very beautiful and amazing, the physical responses of the buildings and the aircraft, the way the fires began and developed, and finally the way the buildings collapsed. Viewed from an entirely concrete perspective, what I watched was awesome.

I did realize the human factors involved here, both the people actually there and the people at home or elsewhere who would know people who were actually there. But until I actually SAW video of those people, it was basically too abstract for me. I can intellectually know these things, but I need a visual to actually understand. One thing that helped me to find the emotional response was to describe what I was seeing to another person. Once I could hear myself talk about it, it was much easier to understand the human emotional response.

The images which were most striking to me from the emotional standpoint, were the ones with people holding photos of their friends and relatives who were missing, with the headnotes "where is my brother?" or something like that. This was the most concrete way I could find the emotions and understand.

What is very strange to me, and increases my curiosity from the concrete perspective, is the emotional response as a collective whole. Some people cried, some had straight faces, some seemed numb. All these people were basically seeing and experiencing exactly the same thing, but the emotional response of each person was different. This is difficult to understand from a concrete perspective, especially for someone who has difficulty understanding emotions in the first place. Which would be the "socially appropriate response" under this sort of circumstance? Most of the time, I have an "automatic smile" on my face, because in general it is the most appropriate facial expression. But in some cases it does not work, but what would be appropriate here? Some people were straight, some sad, some crying. For someone who likes absolutes and knowing the "right thing to do", it is very confusing to have so many different human reactions to the same set of facts.

If your child has difficulty with understanding the emotional responses of himself or others, you might try first asking him to describe what he is seeing, and what are his thoughts about it. Also you can ask him to draw it on paper, or set up action figures and use blocks for buildings and toy airplanes. Then ask him a third-person question, such as "how do you think those people feel right now?" I would recommend you NOT start with a personal question such as "how would YOU feel?" because the child may then swing to the other extreme and believe that something bad will happen to him or to his parents or friends or others.

B. Qualitative impairments in communication:

1. A delay in, or total lack of the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).

For my family, we were heavy metal toxic and had systemic virus issues. Lack of language for us was because of the overwhelming assault on the body, causing dulling of mental capacity. Removing toxic metals and viruses has caused my previously non-verbal children to become VERY verbal.

Other reasons may include that finding and forming words is difficult, therefore the fewer words necessary, the better. So if the child whines and the parent anticipates the need as hunger or whatever, then provides the food, the child has no further need for communication. NOT providing the food would result in an escalation of whining unless another communication tool is provided and taught.

It is also very difficult to focus outward when the body feels very dull and strange, or even painful, inward. Therefore the less focus on the outward, the easier it is to focus on the inward.

Many times I am much happier focusing inward. My imaginary world is always accepting of me, not like the outward world where most people are not accepting and even hostile to me. I have no incentive to emerge from my inner world where life is always enjoyable.

Additionally, things in the outward world are very confusing, but I can control things in my inner world. Many times I will appear to be "talking to myself", which on one forum I learned is called "psychotic speech". But I disagree with that, because my talking to myself serves a very beneficial purpose. To use my previous current event example, I was not able to understand certain aspects of that situation without hearing myself describe it. In school many times, I was unable to understand the concepts the teachers were teaching, until I went home and discussed it "with myself". Most social situations I do not understand, but it is much safer to work things out in my imaginary setting, having different "characters" say the things I heard others say, then imagining my responses and the responses of others, and continuing the conversations creating different endings. This is safer because if I say something wrong, I can have one of the characters react negatively, I can figure out a response that I can use if it happens again, and then I can "rewind" the situation. No personal physical or emotional injury can occur, and I have learned something I can say if that situation ever arises again.

When I am doing this however, I appear to others to be "staring off at nothing", but it would not be a good idea to distract me away from doing it, because I am trying to learn something in my own way, or I am retreated into my own world to escape the mistreatment of the "real" world, and it is very therapeutic for me.

2. Marked impairment in the ability to initiate or sustain a conversation with others despite adequate speech.

For me this is primarily transition and abstract concept difficulties. I have difficulty transitioning from one topic to another, so I tend to stay on the same topic, especially if it is a "safe" topic, meaning one which I know something about, so I can try to participate in the conversation. Abstract concepts can be difficult to discuss because I don’t understand what people are saying, and perhaps any subtle unspoken meanings behind the actual words used, and I don’t want to look stupid. So my conversation will generally tend to be focused on concrete things on which I have a lot of knowledge.

Plus if I am very interested in a specific subject, I will enjoy talking about it, and I may not understand why YOU are not also interested in this subject. But if I have some knowledge about a lot of different subjects, it would make it easier for me to participate in conversations on a variety of subjects.

3. Stereotyped and repetitive use of language or idiosyncratic language.

Same comments as previously, plus some words and sounds are either fun or painful to say. I cannot say the /z/ sound, and certain other sounds, so I avoid words which use those sounds, because they will sound like /s/, and sometimes people will laugh at me because of it. Also, the /s/ sound feels good to me, it is a fun sound to make. Some words are fun also, and some can clear up a stuffy sinus or something like that, so I might say that word several times because it helps my head feel better. For my son, after he learned to talk, he repeated videos quite frequently, which was usually because of yeast or viral overgrowth.

I also know the meanings of certain words, so I will tend to use those words instead of other words where I may not know the exact meanings, especially different nuances of those words. I don’t like sounding stupid, because people tease me and that hurts. It is also a transition thing, if I know certain words, to begin using other words instead of the words I already know.

4. Lack of varied spontaneous make- believe play or social imitative play appropriate to developmental level.

Imitation is generally taught first, where the child watches and listens to other children and adults, and then tries to imitate them. This is difficult if what the other people are doing and saying is confusing or not desirable. For example, if I really like to line up objects, why do I care that other people like to put on their clothes? I might like to think that everyone does something different, or I might not care because the activity that others are doing does not seem important to me.

Pretend play is a higher level activity, but is difficult when I cannot project my thoughts and feelings onto another person, or if I cannot understand what another person might want. I have done much imaginative and pretend play, but all in my head, none really with actual objects such as dolls or trains. This is very helpful for me to understand confusing concepts as I outlined above, or to escape the reality of being mistreated by others. It is nice to create a world where I am accepted. So lack of pretend play with objects I do not see as necessarily a lack of pretend play, because the child may have plenty of pretend play in his mind.

One thing that helped my son with this quite a bit, is having a video and book and actual figures all of the same story. So we have Winnie the Pooh video, the same story in a picture book, and the actual plastic figures. First we watch the video and turn the pages in the book. After that, we played the same situations from the video and book with the action figures while the video was playing. Then without the video playing. Then I would put on another Pooh video, same characters just different story, to show that they don’t have to do the same thing all the time. Now we can put the figures on the trains and stuff that is not in any video.

C. Restricted, repetitive, and stereotyped patterns of behavior, interest, or activity:

1. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest, abnormal either in intensity or focus.

This is a strange one for me to understand, because if you are reading this right now because you have an autistic child, I would venture about 98% of you are relatively preoccupied and repetitive about learning about autism and how you can help your child. If you have a college degree or other higher education, you were probably relatively preoccupied and repetitive about the work involved to earn that degree. If you have a specialized field of employment such as medicine or law or education or something similar, you are probably preoccupied and repetitive about that. Although it might not be considered "normal" for a young child, I do not see it as necessarily a bad thing.

These types of interests are generally called "obsessive interests". Much of my own preoccupation with certain things can relate to transition difficulties. Once I like something, I want to learn all there is to learn about it, and the more anyone learns about any subject, the more you realize that you will never be able to learn it all. Plus transitioning to another subject is a major step, and generally difficult to do.

Diverting someone from an obsessive interest requires advance notice to allow for completion of the current thought process plus time to process the transition. So if I am thinking about my trains or blocks or other interest, and I am working out a situation in my head, and you want me to come clean the kitchen or something, I will want to finish my thoughts on the current situation, then work on transitioning to another set of thoughts regarding the kitchen. Otherwise I will continue to focus on my current thoughts because I don’t want to forget what I am thinking about, so I can resume it at a later point in time. The five-minute warning is very good for me in this sort of situation.

I also do not like the unknown, because generally it is accompanied by teasing and/or mistreatment by others. I want to prepare myself for my automatic replies in case a situation occurs which might be new to me. It takes a minute or so to bring to mind those phrases for responses. If I am not allowed to remind myself of what they are, it is very overwhelming and stressful for me.

Best to start with unknown situations by having a small group of known or at least "friendly" people, and to know as much about what to expect as possible. I rely more on imitation in unknown situations than in other situations.

To help a child grow and progress in this area, it is good to take him out of his comfort zone just a small amount, and be sure he has standard "automatic" responses to handle the surprises that will arise. Then after a few minutes which can slowly be lengthened, you allow retreat to a safe place, to settle down and remove the stress.

You can also use these interests to help teach your child concepts. For example, if he really likes trains, use his toy trains, books about trains, or other train items, to teach counting, colors, reading, or whatever other concepts you are trying to teach at that time. Here is my page of special interests, to give you more ideas.

2. An apparently compulsive adherence to specific nonfunctional routines or rituals.

This one is funny to me. By whose definition are these routines "nonfunctional"? Certainly not by MY definition! I cannot think of a single thing a child does that can be described as "nonfunctional". Everything is done with a purpose, either because it is fun, feels good, avoids pain, helps the child to cope with life, or some other purpose.

For example, say your child wants you to drive the same route to school and home again, and he has a major problem if you deviate from the known route. You can tell him or show him PEC symbol for where you are going, but then you do not appear to be actually going there. This can cause major anxiety. It is a transition. Where are you taking me? I am not prepared and I want time to prepare myself. Are you taking me to a doctor office where they stick me with needles???????? Major anxiety!! Or maybe, will we be late to school? That always means people look at me when I walk in late, I have to join the activity currently in progress and I don’t know what stage of the activity the other kids are currently doing. Sometimes I have to rush to catch up to where they are, like if they are coloring or making an art type of project, or reading a book. All of this is a major transition done in a rushed situation, which is very stressful for me. So I don’t want you to deviate because I don’t like the unknown, I don’t like rush, I don’t like so much transition all rushed and at the same time, and you might be sneaking me to a place I don’t want to go. So if you have to go to school or home by a different route, be sure to explain to me with words or pictures exactly where we are going, and why we are going there, and then don’t lie to me and try to sneak something by me. I may not cooperate the first time, but I will learn to trust you. And when we finally do get to school or wherever, stay with me [or have the aide do it] and help me get to where the other kids are, without so much rush and pressure.

If the child likes wearing only certain clothes and protests with other clothes, it is probably because certain clothes he knows are comfortable for him, and his experience with other clothes is not positive. So he will want to wear always the same shirt or shoes or whatever, because he knows they don’t hurt him. Look for fabric feel, presence of tags on the neck line, too tight/loose, some items have loud patterns which can be very distracting and/or actually hurt the eyes, etc.

You can use this desire for routine as a beneficial thing. Routines and especially visual schedules are very helpful to let people know what is coming next. They are very good for transitions, because you can tell what is next and a five minute warning is easier to accommodate. Also, if you need to interject an activity like a surprise doctor visit or grandma coming or something, you can actually physically move the activities over and leave a space, then insert the new activity and let the child have time to process the new timeline. Also it prevents or at least reduces preoccupation with the previous series of activities, the child may not want to forget about the activity he expected next, but when he sees that he will still be doing it, it is helpful.

I made an outline of my notes for this presentation for two reasons. First, I did not want to forget certain things that I wanted to say. Most speakers do this. Second, because if I was interrupted with a question, I would have been preoccupied with "where was I in my presentation" and would not have been able to fully focus on the question without risk of completely losing my train of thought. This reduces the stress of the unknown, because I can always get back on track to where I was when the interruption occurred.

3. Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping, or twisting, or complex whole body movements).

This is generally called self-stimulatory activity, or "stims". However, about 85% of "stims" are actually self-CALMING, not self-STIMULATING. Some children rock, which is generally for focus, to block out overwhelming external stimuli, it is very helpful to rock, or flap hands, or other repetitive motion.

For head banging, hand biting, or other similar injurious type of behavior, that is generally for pain avoidance. Yes it sounds strange to be pain "avoidance" when the behavior looks as if it is causing pain. But if there is overwhelming physical pain in the head or somewhere else in the body, or overwhelming confusion or frustration or serious mistreatment by others, it is very helpful to focus the pain on some localized area. This helps for two reasons. First that localized pain where you know the cause, is much easier mentally to understand and cope. Second, this sort of pain does release, so you have a lot of pain which gradually declines, so the other pain where you have no control and it seems to never stop, is easier to cope when you can create pain under your control which will eventually subside. It allows focus and makes it easier to block out the overwhelming pain and/or confusion, to focus on something understandable and which subsides.

Some pain or stress-related stims are chewing on lips or the inside of the mouth, hitting self, picking skin, flapping hands, pacing, twiddling or drumming fingers, chewing fingernails, making noises, and twirling hair. If many of these things also sound like NT habits, you are correct.

Some "feel good" stims are flapping hands, making noises, waving objects in front of the eyes, suncatchers causing rainbow effects, picking skin or teeth, chewing nails.

Some stims which actually are "self-stimulatory" to basically fill time when a person is bored with waiting or frustrated because not understanding a topic and wants something else to do with his time, are doodling on paper, lining up objects or straightening existing objects, twirling hair, pacing, twiddling or drumming fingers, and making noises.

If your child has a socially inappropriate stim, there are two things you should do. First, help him find and remove any sources of pain or frustration or boredom. Second, help him learn to modify it to something more socially appropriate.

Do not forbid stims entirely, or the child will never be away from the pain or frustration that caused the stim in the first place, and may develop a new stim which is more undesirable than the one you are trying to suppress. It is best to modify stims to be socially appropriate, after all, EVERYONE stims to some extent. Also stims can be done in private, like only in a bedroom or bathroom, or only at certain times, like at recess or break or after an activity is completed, as a reward for staying on-task.

4.Persistent preoccupation with parts of objects.

This is the "can’t see the forest for the trees" syndrome. Many people believe that being an attorney is not consistent with being AS. I do sometimes have difficulty with the "big picture", but I am VERY good with seeing inconsistencies in arguments, and I am told I am very good with cross examination and writing briefs in support of retrial or reconsideration of a decision or ruling that went against my client. Sometimes it is better to see the parts and not the whole.

As my son has improved in all areas, he is much more interested in taking things apart. For him, he wants to see how it works.

Abnormal or impaired development prior to age three manifested by delay or abnormal functioning in at least one of the following areas: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

Source: The Diagnostic and Statistical Manual, 4th Edition, American Psychiatric Association, 1994.