Build the Autistic, Don't Tear Him Down

While most of the feedback I have gotten from this site has been quite positive, there have been a few letters (okay... two of them) from people that don't seem to get what I am saying. One letter is just a singular thing... two letters, even two letters among many times more letters saying the opposite, constitutes a pattern. I have to wonder how many others did not get it and did not write about it. Thus, I decided that I would address the issues directly right here. Now, certainly, I know that I cannot reach everyone, and that a good percentage of people that do "get it" will not agree with my opinions. That's fine, of course; I do not pretend to be the final word on anything. What you see on this site are my opinions, and while they seem to be pretty representative of those held by autistics, they are not intended to be interpreted to be anyone's opinions but my own.







The two letters of which I speak had a number of similarities. Both were from people who cared for an immediate family member (a brother and a son, respectively) that was profoundly autistic, and both questioned the relevance of my statements here on this site on the basis that I was obviously much higher functioning than the person they know. I suppose they think that because I am autistic and relatively capable, and their family members are autistic and relatively incapable, that I have nothing to offer them in terms of insight, that my views that we have a right to exist without being forced to be normal are just not relevant. While it is true that I am not as impaired as someone that is profoundly autistic, it is also true that, in each case, I am closer to being profoundly autistic than the person claiming that I am not autistic enough to write authoritatively on the matter. I would add that it is not about how autistic I am; I am not trying to get people to take what I say on my authority as an autistic person, and to believe it mindlessly because of my neurological configuration. I'm not... not by a long shot.







This site is offered to give people a glimpse into the perspective of one autistic person. I make no promises that other autistics will think as I do. That is so obvious to me that it seems silly to write it... one cannot expect all autistics to automatically agree on anything, any more than one would expect all neurotypicals to agree on something, just because they are all normal. This site is offered to provoke thought, to make people ponder whether curing their son's, their daughter's, their sibling's autism is really something that they should be trying to do. I do not expect people to swallow whole what I write, to accept it without skepticism because I have the right credentials (being autistic, of course). It has been a complaint of mine that NTs, the "big picture" folks that they are, tend to want their facts pre-chewed and served to them ready to accept, with no investigation or critical thought necessary. They tend to want you to tell them just the "gist" of what you are saying, and they will accept or reject that "gist" based on their perception of your credibility on that topic.







That is not my thought process at all. I am a detail-oriented being; when I am attempting to communicate a concept of some sort, I tend to include all of the detail, and to all but ignore the "gist." My mother used to always accuse me of "using a thousand words when a few will do." Maybe a few would do for her, or for most NTs, but they do not for me. I need to know how someone arrived at a conclusion; I am more interested in the facts that support that conclusion than the conclusion itself. I will take those facts and analyze for myself whether they fit the conclusion or not. I have no concept of being able to separate the "gist" from the supporting facts; although people tell me it can be done, it seems rather silly to do so, and I have never really been able to do it. As such, when I make an argument for something, I tend to do so with logical supports and a virtual barrage of facts. This is how I think. The articles on this site are certainly no exception to that. When I write an article for this site, I expect my reader to consider the facts that I have presented, to ponder whether the premises fit the conclusion, and to apply that to their own existing knowledge base on the topics on which I write, and to see how it fits. This, for me, is how every word I read, every word I hear, is interpreted.








Apparently, though, this is not how some people read this site. Maybe they skip over my supporting statements and work to extract the "gist," and then consider whether or not I have the credentials to make that statement. Maybe the title of the article itself is sufficent to give them the "gist." For a person that is big-picture oriented rather than detail oriented, and who is more swayed by such social hierarchy concepts as credentials or fitness to write about a given subject, I can see how that would happen. People that use the gist extraction method are easily fooled by salesmen, scam artists, politicians, and others that are able to make themselves appear more credible than they are (usually with body language). This method relies on someone else's ability to come to a conclusion about a given topic, and to accept or reject the conclusion that person reached without knowing what their premises were. I can't imagine that people would do that, but I see evidence of this kind of thought on a daily basis. I find it amusing that I am considered "impaired" because I do not think that way.








Critical analysis does not come naturally to NTs, apparently... I can recall much emphasis being put on teaching critical thinking skills when I was in college. NTs are often able to get by in life almost by instinct... their NT ways are so well accepted by the populace in general that critical thought hardly ever becomes an issue. For people that have no such social instincts, and for whom the very act of interaction is, on some level, unnatural, every little tidbit of information encountered must be subjected to analysis.








By now, at 31 years of age, I have become quite good with critical analysis and logic; it is only because of my abilities with logic that I have been able to generate cognitive approximations of normal brain functions, like theory-of-mind. I had to learn theory-of-mind; I did not have it when I was five years old or so, but I do now. Normal kids possess inborn theory-of-mind; mine is a logic-based simulation, springing from an observation I had years ago that others' thoughts and motives were different than mine. Many of my more normal-like abilities (like the ability to understand abstract concepts) are cognitive simulations of normal function, and at the core, are composed entirely of a set of concrete and logical rules. I have no idea how obvious this is to others, but I am patently aware of the cognitive nature of those things, as it does require significant thought to maintain these abilities.








It is my hope that people will take what I have written here and consider it on the basis of the premises that I offer. I aim to make people think about what they are doing with regards to their autistic children.








Most disturbingly, both of the writers seemed to think that my statements that autism should not be "cured," that the goal should not be to "fix" the child, were the same as saying that we should just let autistic kids be, and not try to help them in any way. I just do not see how anyone who has read more than the table of contents of my page can really think that is representative of my views. Probably the most oft-repeated statement on this site is that I would like every autistic person to be the best, most capable autistic person he can be. Nowhere in that statement can I see where one might "read in," as NTs are prone to do, that I am not in favor of trying to help autistics become self-sufficient, to overcome the disabling components of their condition, to be adults that do nor require guardians or institutions to get them through the rigors of daily life. I have written in a number of articles about the ways that I suggest that autistic children can be educated and prepared for their future as an autistic adult.








What I argue against is an attitude. I argue against the idea that autism is an enemy, a child-stealing demonic disease that must be battled back, in order to free the normal child inside. I argue against the notion that teaching methods that are designed to work with autistic kids instead of normal kids are something heroic, something that deserves to be called "intervention," whereas teaching methods for normal kids are simply called "teaching." I argue that it is wrong to assume that any progress on the part of the autistic kid is a sign that the war on autism is working, that the child is becoming more normal. I argue that it is wrong to assume that the autistic person is static, that no progress is possible, that no self-care or communication skills can be learned, without "battling back" the autism. These are the things for which I argue.









Inherent in this misunderstanding is the false dichotomy that many NT parents of autistic kids share. To them, the only two choices are "autism, the way he is now" and "complete recovery." If I argue against trying for "complete recovery," the assumption is that I must, therefore, support the other choice in that false dichotomy, which is "autism, the way he is now." Any argument against trying to normalize the kid is seen as an argument that the kid should be left as he is now, for the rest of his life. This is what some people think, despite my many statements about the things that can and should be done to give autistic kids the foundation for life skills that will help them to become as independent as possible. It is ironic, but this scenario seems a lot like a theory-of-mind error on the part of the NT. They think that there are only two choices with regards to how to parent their autistic kid, and so they fail to realize that others, like me, see other choices than the two that they offer, even when plenty of evidence that there are other choices is presented.









I do not take a static view of autism. By that, I mean that I do not have an assumption that an autistic person, especially a child, will remain exactly the same as he is now, unless some of the autism is removed. Parents that have nonverbal autistic kids that show no interest in others, that have behavioral problems, et cetera, assume that this "autism" thing cements the kid forever at that developmental level, and that the only way to make any progress is to chip away some of the autism. For them, speech skills, behavioral skills, et cetera, are normal things, and to teach those normal things to an autistic means that some of the autism has to be deleted to make room for the normal stuff. That's nonsense. I'm sorry to burst your bubble if you think this, but you do not get to lay claim to communication skills, behavioral skills, self-care skills, as normal behaviors. The acquisition of those things, in time, is normal for a developing NT child, and they are normal for a developing autistic child, too. Surprise. The goal, with an autistic child, is to find out where the barriers are to such development, and to work to remove those barriers. That's not battling the autism... that is simply being a parent. That is what parents do... they help their children to learn, to develop skills for the future. Why would it be any different with an autistic kid? The fact that there are many more barriers in the case of the autistic child only means that you, the parent, will have to work much harder than if the child were normal. That much is obvious.








The goal for an autistic child, once again, should be for him to be the best, most successful autistic adult he can be. I've written that a lot of times on this site, and I have assumed that its meaning was self-evident. In case it is not, let me explain what I mean, and have always meant by that. I want autistic kids to be able to develop all the self-care skills they need to be independent adults. I want autistic kids to grow to be able to communicate their needs independently (in other words, with no facilitated communication), whether by speech, by use of assistive technology, or with sign language. I want autistic kids to grow into adults that are effective in their ability to self-advocate for their needs. I want autistic kids to grow into employable adults that can make a contribution to society, and who will enjoy doing so. I want autistic kids to grow into people that can consider whether they want to have children themselves, to be able to have social relationships IF they want them... to live as happy, successful, capable autistic adults. I think that is a nice vision.









What I do not want is for the parents, the therapists, the doctors, to push the autistic kid to be normal. That is a losing game for us. We're never going to be as good at being normal as you NTs are. Autism is a neurodevelopmental thing; you are not going to remove the autism by training the behaviors away. All you are going to do is make the autistic ashamed of who and what he is, to think that his innate, real self is horrible, and that it must be hidden from view to gain the love and acceptance of the family and of society. I read a story in a recent issue of Autism-Asperger's Digest, wherein a mother assumed that her autistic child was too impaired to even have a concept of self. Thus, she thought that he could not have a self-esteem problem. Imagine her surprise and horror when her child told her that he was not happy, and that he wanted to die. This, from a child. The mother looked at her parenting technique, and she realized that while she had been saying "no" a lot, she had not been doing anything to let him know when he was doing well. Trying to train away the autism is, in effect, saying NO to behaviors that are inherent to autistics, that are a part of who and what we are. If you do not think that the kid is going to realize that his true self is being hidden by a mask of rote-learned normal behaviors, think again. Even low-functioning kids understand this.








I met, and got to know, an autistic male in his lower 20s. He still lived with his parents, who were overly protective of him. He was probably halfway between the upper limit for mental retardation and normal intelligence. His parents had done all they can to teach him to be normal. One day, after they had once again reprimanded him for some autistic behavior, he proclaimed, "I just want to be me!"








Unfortunately, the parents did not understand what he meant. I do, though, and I hope that the readers of this site will. The parents had been so busy teaching the kid to be normal that they inadvertently had engaged in a campaign to strip the youngster of his essence. He is autistic, and will always be so. In their efforts to help him live in this world, they assumed that only learning to be normal would really suffice. While they thought they were helping him, teaching him how to be as he should have been born, circumventing this nasty autism disease thing, the reality is that they were teaching him that he was unacceptable to them as he is, that he was unacceptable to the world as he is, and the only way to be acceptable is to be someone else. Even the lower-functioning people understand that the normal behaviors that we are supposed to learn are an act. We know that our innate selves are different, and that these rote-learned normality routines are not part of who we are. We "get it" when you tell us that our real selves are unacceptable, and that we must put on a mask and pretend to be one of you to be acceptable. This is not just a problem of the higher-functioning autistics like me... I have seen it in lots of autistics that are much lower functioning than I am. NTs underestimate autistics when they think that they are too impaired or low-functioning to form a concept of self.








The goal, as I have stated repeatedly in this article, should be to raise the best, most capable autistic person possible. The child should be helped to overcome the difficulties, the sensory issues, the anxiety that plagues all autistics, the barriers to communication. He should be helped to develop a set of skills that will help him live independently in this alien world. And he should have all of this done for him while his autistic self is preserved and celebrated. Teaching someone to talk, to care for himself, to live in the world, does not require an all-out campaign to make him normal. Educate the autistic kid, but don't try to destroy him and replace him with an NT. Teaching skills and coping mechanisms is a constructive process; trying to normalize and fight the autism is a destructive process. The autism is a part of the autistic, and fighting the autism is fighting a part of the person. You do not need to fight the autism itself to fight the disabling things that often come along with autism. Fight the disability, the dependence, the inability to communicate, but don't fight who and what the person is. Provide skills, but do not try to snuff out the essence of who someone is. Build up, don't tear down. Don't think that being normal is superior to being autistic... thinking that way leads to the illusion that forcing normality is building up rather than tearing down. It is not.







I hope that this clears things up.

Social Stories

What are Social Stories?

Social Stories are a tool for teaching social skills to children with autism and related disabilities. Social stories provide an individual with accurate information about those situations that he may find difficult or confusing. The situation is described in detail and focus is given to a few key points: the important social cues, the events and reactions the individual might expect to occur in the situation, the actions and reactions that might be expected of him, and why. The goal of the story is to increase the individual’s understanding of, make him more comfortable in, and possibly suggest some appropriate responses for the situation in question.

A sample Social Story

Before we go too far into the specifics of Social Stories, let's take a look a simple sample story.

Lining Up

At school, we sometimes line up.

We line up to go to the gym, to go to the library, and to go out to recess.

Sometimes my friends and I get excited when we line up, because we’re going someplace fun, like out to recess.

It is okay to get excited, but it is important to try to walk to the line. Running can cause accidents, and my friends or I could get hurt.

I will try to walk to the line.

As may be evident, Social Stories are relatively short, straightforward descriptions of social situations, specifically detailing what an individual might expect from the situation and what may be expected of him.

The need for social skills intervention

Qualitative impairment in social interaction is a defining quality for a diagnosis of autism (DSM-IV, 1994) and is thought by some to be the defining characteristic of autism: social dysfunction may be what makes autism something more than just a language delay, etc.

Theory of Mind

Recently, the notion that those with autism may lack a theory of mind has circulated among those who study social impairments in individuals with autism. This deficit is essentially a lack of understanding that others have their own thoughts, feelings, plans, and points of view result in in difficulty understanding the expectations of others and an inability to predict what others will say or do in social situations. This theory of mind phenomenon appears to be unique to those with autism and largely independent of intelligence. Regardless of where an individual may fall within the spectrum of autism-like disorders they seem to exhibit this deficit, though it seems to be slightly less prevalent in those with Asperger's syndrome.

The benefits of Social Stories

How, then, do Social Stories help to address these special social needs and the often unique learning styles of those with autism? Social Stories attempt to address the "theory of mind" impairment by giving individuals some perspective on the thoughts, emotions, and behaviors of others. They help the individual better predict the actions and assumptions of others. Social stories also present information on social situations in a structured and consistent manner, a particularly appropriate approach for kids with autism, especially when dealing with skills and behaviors which are so fluid as those involved in social interactions. Along that line, Social Stories also give individuals direct contact with social information, contact through pictures and text as opposed to speech or observation, notable areas of weakness for kids with autism. Finally, Social Stories provide a little distance between teaching and the possible stresses of the social situation itself; they give the child a chance to practice the skills often and on his terms.

Identifying student needs

Of course, before one begins writing a Social Story, it should be determined exactly which skill or situation one wishes to focus upon. Before even this, though, it is often helpful to look at how a child socializes overall and to determine the possible efficacy of Social Stories in addressing his needs.

There are three broad categories into which we can classify social impairments:

• Social avoidance -- Kids who would fall into the category of socially avoidant might be those who tantrum, shy away from, or attempt to escape from social situations. Often, kids that are this avoidant of social situations are doing so because they have some hypersensitivity to certain sensory stimuli. Consequently, those sensory needs must be addressed prior to attempts at teaching social skills. A kid who is constantly overwhelmed by his environment is likely not going to be successful in many interventions. Social stories may well prove to be useful tools with such children, but only after the sensory needs of those children have been met (through sensory integration, vision therapy, auditory integration, etc.).

• Social indifference -- Social indifference is the social impairment common to the majority of children with autism. Children who are socially indifferent are those who do not actively seek social interaction, but at the same time, do not aggressively avoid such interaction. Social Stories are often quite effective with socially avoidant kids: they can simplify and illustrate social interactions, with the hope that increased understanding of those situations will make them more attractive and reinforcing for the child.

• Social awkwardness -- Socially awkward children are typically higher functioning kids who may try very hard to gain and keep friends, but are hindered by a lack of reciprocity in conversation and interest -- they focus on their favorite topic or topics to the exclusion of most everything else -- and an inability to learn social skills and taboos by observing others. Social stories are often very effective with these individuals as they teach explicitly those skills and taboos that these children do not just pick up from their environment. Social stories provide them with a framework for successful social interaction: perspective on the thoughts, emotions, and beliefs of others in their environment, and suggestions of appropriate behaviors.

Having determined how a child socializes generally, one can now look to defining specific skills and situations to which focus will be given.

It is typically fairly evident to the child and whomever may be working with him which situations -- at home, at play, or at school -- are proving difficult. Even if the child has little language, careful observation can often determine difficult situations. Situations from which a child withdraws, from which he attempts to escape, or in which he tantrums, cries, or becomes frightened may be appropriate targets for a Social Story. As Social Stories primarily address problems of social cognition -- situations in which it is the child's misunderstanding of the expectations and intricacies of the situation which are driving the difficulty -- it should be determined that it is indeed that deficient cognition that is the root of the problem and not some other issue (a sensory processing problem, for example).

Ideally, anyone who works with a child at school or at home -- parents, teachers, instructional assistants, specialists, etc. -- should be consulted prior to the writing of a story. Each may have some unique insight into the situation.

As a Social Story is intended to be written from the perspective of the child, it is paramount that the author is able to obtain that perspective. With higher functioning children, they can assist in the writing of the story, discussing those areas where they are having difficulty and helping the educator or parent to write from that perspective. With nonverbal or lower functioning children this task will require more careful observation on the part of the author. Focus of the story should typically be given to the motivation of current behaviors and not necessarily to the behaviors themselves. For example, if a child begins to tantrum or cry when his assistant leaves the classroom, your first instinct might be to write a story about crying, when and where it might not be appropriate, etc. However, a more effective approach might be to write a Social Story about being scared or frustrated (if indeed you have determined that fear or frustration are the underlying motivation for the behavior), and what things might make him scared, and how he might go about dealing with that.

It is also very important that the expected response is clearly defined. To continue the above example, again one may be tempted to define the expected response as "Kevin will reduce the number of incidences of crying each day," or something similar. A better expectation might be "We will attempt to make Kevin feel more comfortable when his assistant is out of the room.

Writing a Social Story

Having determined those areas on which one wishes to focus, the writing of the Social Story can begin. Again, a Social Story is usually a first-person, present-tense story used to provide a student with as much information about a social situation as possible, so he is better prepared to face, and act appropriately in, that situation.

There are four types of sentences used to present this information in a Social Story:

• Descriptive sentences objectively address the “wh” questions: where the situation takes place, who is involved, what they are doing, and why they may be doing it.

• Perspective sentences give a peek into the minds of those involved in the story; they provide details about the emotions and thoughts of others.
• Directive sentences suggest desired responses tailored to the individual.
• Control sentences are authored by the student himself as something of a mnemonic device -- a sentence to help him remember the story or deal with the situation. These are not used in every story and are typically used only with fairly high functioning children.

Below is another sample social story. Each of the sentences in this story has been labeled to illustrate each of the above sentences (except for the control sentence -- I've not yet had a child that has opted to use them, so I'm not going to even pretend to be able to dream up a good one yet).

Sitting on the Carpet

Sometimes our class sits on the carpet. (descriptive) We sit on the carpet to listen to stories and for group lessons. (descriptive) My friends are trying hard to listen so they can enjoy the story or learn from the lessons. (perspective) It can be hard for them to listen is someone is noisy or not sitting still. (descriptive) I will try to sit still and stay quiet during our time on the carpet. (descriptive)

Carol Gray, the developer of Social Stories, has edited two books on Social Stories. Each contain dozens of sample stories and a very helpful kit on writing social stories. In those kits Ms. Gray recommends that a ratio of at least three to five descriptive or perspective sentences for every directive sentence be used for each story. As a child becomes more and more successful with Social Stories, those stories can eventually be written with no directive sentences at all, leaving it up to the child to determine an appropriate and successful response (which is of course, the eventual goal of any social skills intervention). Remember, Social Stories are not scripts detailing appropriate behaviors, rather, they are descriptions of social situations which set the stage for the child to design successful, positive interactions. Along that line, you should avoid the use of absolute, inflexible sentences in your stories. Replace phrases like "I can" and "I will" with "I will try" or "I will work on" in directive sentences. "Usually" and "sometimes" should be used instead of "always" in perspective and descriptive sentences.

When writing your stories, ensure that you are writing with the child in mind: use an appropriate vocabulary and an appropriate type size. Try to make each story resemble as closely as possible the other literature the child may be encountering at home and school. If you are working with a Kindergartner this may mean a single idea on each page, with an accompanying illustration. A middle school student might require a much longer story, maybe resembling a newspaper or magazine article: multiple columns, small type size, etc.

Presentation and authoring styles

While text on paper is likely the easiest presentation to prepare and use, it may not be the most appropriate for every child (non-readers, etc.). There are, however, a variety of presentation styles and options that can be used to meet the needs of a variety of children.

• Illustrations -- The child (or parent/teacher) can illustrate each page of the story, or photographs can be taken of the child and his peers in the social situation. These pictures can add interest and visual support for the presented ideas. Be wary, though, of images that are too complex. Children with autism do not always focus on pictures as we would expect (they sometimes fail to focus on a prominent object in the foreground in favor of some other item in the background), so the pictures (photographs, especially) should be as visual uncluttered as possible.

• Symbols -- The text of the story can be augmented with pictures representing various words or ideas. The Mayer-Johnson Picture Exchange symbols (often generated through their Boardmaker computer program) are typically good choices for this use. For beginning readers, PECS symbols or simple blackline drawings can be substitutes for written words not yet mastered. Or a single, large symbol can represent a complete idea on a particular page.

• Social Stories on tape -- A reading of a particular story can be recorded on audio tape with a tone or verbal cue for the child to turn the page.

• Video -- A film could be made of the student and peers acting out applicable scenes from the story. The text of the story should be edited in before the applicable scene, and the written story presented along with the video when it is presented to the child, however, with the hope of eventually fading the video for the written text (as the text is much less labor intensive to create and use than a video).

• Story boxes -- The child and an adult can act out scenes from the stories with small figures, rooms made of shoeboxes, etc. This too, can add interest and increase understanding of the concepts for children who are not strong readers.

Implementation, monitoring, and fading out

Prior to the introduction of a story, the story should be shared with as many people who are involved in the child's program as possible. Accessing this variety of viewpoints can call attention to finer points that may have been overlooked or misstated in the initial authoring of a story. Before, or shortly after, the introduction of the story to the child, those who may be involved in the situation or with the skill targeted should be presented with a copy of the story. It is often helpful to actually have the child present the story to these other students, staff, or family members, and then to have those people read back or discuss the story with the child. These can help the child understand that everyone is on the same page, operating with similar assumptions and expectations. These other students, staff, or family members should be encouraged to refer to the stories when the appropriate social situations arise. As an example, if a child were currently working with a story about raising his hand before he speaks out at school, the classroom teacher might want to refer back to that story prior to circle time. But, as the child has to use this skill in other locations as well, the story should probably be introduced to his speech teacher, his music teacher, the librarian, and so on. Each of these individuals can refer the child back to elements of the story as the need arises.

A consistent schedule for reviewing each story should be maintained. At first this is typically once a day, usually right before the targeted situation (e.g. right before the bell dismissing the class to recess, if the story is about the need to take turns on the monkey bars). However, for some kids, especially during the first few readings of the story, the time just prior to the situation may be too exciting or busy to completely hold their attention for the story. For those kids, consequently, it may be helpful to read the story early in the day and then simply review the highlights prior to the activity.

The effectiveness of the story should be monitored consistently. If after a week or two of working with a particular story, there is little noticeable change, the story should be reworked. Elements that may be vague or confusing should be removed or rewritten. The motivation behind the behavior may need to be re-evaluated. Is the story truly addressing the reasons why the child may be confused or misreading a situation? Is the problem in the situation really one of cognition, or could something else be affecting the child (environmental stimuli, etc.).

As the child becomes more and more successful with the situations presented in a particular story, that story can begin to be faded out or changed to meet the new needs of the child. The number of review sessions can be lessened from once a day, to every other day, to once a week, to twice a month, and so on until they are no longer needed. Or the directive sentences in the story can be reduced or eliminated,

As each story is mastered, it should be kept visible in the child's environment for review when needed. Because the stories are so personalized, so much about the child, they can often be favorites, something the child might want to look through on his own, even when not working on them specifically. A special basket or notebook of mastered stories are good to keep around.