Social Story in DAISY Format for Children with Autism

Lailani David
Autism Society Philippines

Ohayoo gozaimasu. Thank you very much for having us here. I’m really honored to be here this morning. All of the things that have been happening over the past few days have been so overwhelming for me. First is the weather. For some, it’s probably warm. For some, it’s probably cold. For where I came from, this is winter in wonderland. It’s so cold that I really needed to use the heater in the bathroom. Second, all of the sharing of experiences and the presentations are all amazing.
The title of my presentation is “DAISY-The Convenient Truth: Creating Social Stories for Filipinos with Autism.” I am one of the few DAISY trainers of the Philippine DAISY network. I am a volunteer at the Autism Society of the Philippines. I have my other full-time job but before this volunteer service I used to be a training coordinator of the Society doing some community-based training.

DAISY production for autism is very new. It was only in February of last year that we were trained in DAISY production. ASP (the Autism Society of the Philippines) is a non-profit organization. We have 38 chapters nationwide with 6,000 members and hopefully we’re growing. In the Philippines most persons with autism have some kind of mental retardation, so it is classified as an intellectual disability. There are a lot of potential users of DAISY in the Philippines. There is still no census to tell us how many Filipinos are affected by autism. We have a population of 89 million. Based on the ratio that 1 in every 150 has autism that means that there are about half a million Filipinos with autism. According to census in hospitals, there are only 5% who are diagnosed. We do not have many professionals who can diagnose it. Only about 2% are receiving proper treatment and intervention programs.
For everybody to understand where we are right now in the Philippines as far as DAISY is concerned, let me just give you a quick update on DAISY networking in the Philippines. In April of 2008 the Philippine Network of DAISY Consortium, Incorporated was formally established as the sole NGO focused on DAISY production and promotion. Currently the National Library of the Philippines is the official repository of all materials produced in DAISY format, but I can tell you we still don’t have anything inside the library yet. The members are still building up the materials at this point. Also, a DAISY desk was created at the National Council on Disability Affairs (or NCDA). The desk will promote DAISY to all concerned government and non-government agencies.

Consequently, through an NCDA board resolution DAISY was adopted as a standard in the production of accessible materials for people with print disabilities. There are already initial discussions with the College of Computer Engineering of the University of the Philippines for the development of a Filipino voice engine. Right now, various government agencies like the Department of Transportation and Communication, the Department of Health, the Department of Education and other local government units have already shown interest in having their materials transformed into DAISY format.
These are the five DAISY creators of ASP. They are comprised of three parents, including the President of the Autism Society of the Philippines. I find it disadvantageous if you have the President as a DAISY creator. Those under her tend to do the job. We also have a relative. She is a filmmaker. Of course, there’s a volunteer. That’s me. And we have a person with autism who is creating DAISY books for us. His name is Jed Aaron Dee.
I’d like you to meet him. I’m showing a picture of Jed now. He is 22 years old. He finished a degree in library science from one of the universities in the Philippines. Jed was diagnosed with Asperger’s syndrome. Asperger’s syndrome is at the higher-functioning end of the autism spectrum disorder. It is a developmental disorder that affects the person’s ability to socialize and communicate effectively. People with Asperger’s syndrome have difficultly fitting into society. Jed started creating DAISY books only last November. He reports three times a week and three hours a day.

In ASP we started our own DAISY campaign through online newsletters. This is an article I’m showing right now from one of the major daily newspapers in the Philippines. The article is entitled “DAISY: Helping Persons with Autism to Read.” We actually featured the e-mail sent to us by Mayu-san telling us more about how DAISY is helping Japanese students read.
This is from the daily e-newsletter of the Autism Society of the Philippines entitled “First Filipino Person with Autism to Plant DAISY.” We tend to associate “daisy” with a plant and we want to plant it everywhere in the country.
This was also a featured article after a seminar on augmentative communication conducted by the Philippine Association of Speech Pathologists. We were invited to give an orientation on DAISY, so we are also doing orientations for other groups who request some information on DAISY. They are members of the Society. They see some information through our e-newsletters and they want to know more about it. They requested an orientation from our Society. ASP is producing full text, full audio materials. The texts are highlighted and synchronized with narration. We are using human recording and synthetic speech. We include images. We are still going to experiment to see if we can include sound effects. It might be too much for our users if we include so many things. Persons with autism tend to have difficulty focusing. Sometimes even by just adding an image with different colors, they might miss the message because then tend to focus on the color rather than the story itself.

So far we have created three kinds of materials. They’re classified as general information, disaster preparedness and social stories. The general information materials we have produced so far are we have converted the Autism Society brochure and one of my DAISY training reports. This can be one way of actually putting DAISY into the mainstream even for other users, not just the special children. Probably just like Bethel’s House, we are producing disaster preparedness materials. We make use of public documents like posters, fliers and comics. We have obtained formally and informally the permission of the ones who came out with the material. It’s under the Department of Science and Technology. It’s the Philippine Institute of Volcanology and Seismology. They have all of these materials on earthquakes and tsunamis. That is why one of our ongoing projects now is also converting the tsunami comics into DAISY format. As much as we want to really put it in the same way as the comics’ layout, we prefer to use a simple layout for our users.
For the social stories, we are also having issues regarding permission to use the materials because we don’t really have a Filipino version of the social storybook. We are using the social story by Carol Gray but for training purposes only since, as I said, we don’t have permission to really convert it into DAISY format. The one we’re going to see later is from the book by Carol Gray. It’s entitled “The New Social Storybook.” We have tapped the services of special education teachers to come up with an original composition based on Filipino values and tradition. We are really contextualizing it into our own country. We’ll show you later one social story in the Filipino context.

For the tools that we are using for production, we are using “Save as DAISY” and also the Dolphin publisher. Dolphin is the commercial one and “Save as DAISY” is still open source. For the software and hardware, right now we are using AMIS, which was used earlier by Bethel’s House. We are also using TAB, the one from Thailand, and also Dolphin is a reader and the Victor reader but these are not yet out in the mainstream as of this time. How are these books obtained? The DAISY books we have created so far are not yet available for public use. We are still setting up to conduct a pretest of these books for high-functioning adults with autism. This test will simply verify it in terms of presentation of text, fonts and images and the presentation of color in terms of their preferences. We want to be very, very careful in terms of releasing it publicly for persons with autism because, as you know, autism is a multi-sensory disorder and DAISY has a multi-sensory feature. We want to really study how DAISY will react to persons with autism. We do not want DAISY to really aggravate their condition. Everything is still under study at this point in time for us in the Philippines. How do social stories work? Based on our initial consultations and discussions with parents and professionals who are treating persons with autism and are given intervention programs for them, they find the DAISY book applicable and useful only to persons with high-functioning autism or those classified with Asperger’s syndrome.
People with autism are often misunderstood because they have social deficits or they lack social skills. Sometimes I wonder if I also lack social skills. Having said that, it is important to teach social skills because these skills are linked to peer acceptance, teacher acceptance, inclusion success and post-school success. This will really help them in their adult lives. Primarily, social stories are used to teach them daily living skills. We would like to share with you some guidelines in producing your own social story here in Japan for persons with autism using the DAISY format. Developing social stories in DAISY format should first and foremost be based on thorough knowledge of the autism spectrum. As you can see, it’s very, very wide. Autism is considered a spectrum disorder because there is a wide range of manifested symptoms. An awareness of the extremely individual presentation of the characteristic impairments is really very essential. Some important considerations that you need to know are that there should be close collaboration between parents and professionals who are developing social stories. Really, the involvement of family is very, very necessary. As a result of that collaboration, this can then be used to prompt careful and sensitive gathering of information, informed observation, the selection of situation and context and the staging of appropriate events, selection of tasks and useful procedures and materials. Ultimately, this will make the social story fit into the needs of the user.

A social story contains very few lines. It’s very short. It can actually fit into just one screen. You will commonly encounter one or two images. Social stories must be very simple and clear. For the DAISY creators here, you must consider the following. Select social stories in realistic and functional settings. Be simple with words. Use common language. Instead of using “courteous” you can use “polite.” And avoid using complex layouts. Just have simple structures that provide consistency and boundaries. That will really help them and make it more enjoyable for them, rather than coming up with such complex layouts. They really do not like change much. If they are familiar with such layouts in their other activities, you might keep up with that. I don’t think they would be a good consultant for the Obama administration because Obama likes change. These children do not like change. He will have trouble if he has an advisor from the Autism Society of the Philippines.

Also avoid too artistic font styles. Probably Ariel or Times New Roman is enough for them. Avoid background colors but for some, as I said, there’s a wide range of manifestations and symptoms so it’s really different for each one. It should really be customized to the needs of the child. It is advisable that you break sentences into clearly identifiable terms. You will see later that in some DAISY formats the sentence is highlighted as a whole but for people with autism, they prefer chopping the sentence into small chunks. Sometimes I observe that they prefer it how they read it with pauses. So where they pause, the highlighting should stop. Include only images that are necessary and relevant.
I will just show you three demonstration samples of DAISY books which Jed created using his own voice. He’s fond of using his voice, so I didn’t get the chance to record my own voice. When he wasn’t around, I sneaked in one social story for him using my voice. Just give me a minute.

David: I’m using AMIS.

Dee: Learning to chew gum. Sometimes people chew gum. Usually they chew one piece at a time. Sometimes gum comes in a wrapper to keep it clean. It’s important to take the gum out of the wrapper before putting it in my mouth. It’s a good idea to try to chew my gum with my mouth closed. That way, I will chew my gum quietly. I will try to leave my gum in my mouth while I am chewing it. When my gum has no more flavor I may take it out of my mouth and put it in the wastebasket. Sometimes, before I put my gum in the wastebasket I might put it in a tiny piece of paper or tissue.

David: OK. That’s him.

Player: Open file dialogue. This dialogue is not self-voicing. Press “escape” to…

David: This is a new one.

Dee: Giving a gift. A gift is something you give to someone. People give gifts to other people. Some gifts are big. Some gifts are small. When I give someone a gift I might say, “Here’s a gift for you.” Sometimes people give me a gift. When people give me a gift, I will try to say “thank you.” Saying “thank you” is polite. People like to hear “thank you” after they give someone a gift.

David: I’m sorry. Some of the highlighted text was not seen. This is the last one.

Player: Open file dialogue. This dialogue is not self-voicing. Press “escape” to cancel.

David: This is the social story I mentioned to you where we contextualized Filipino values. It’s on the Filipino way of saying, “How are you?”

Player: Done.

David (recorded): Kumusta ka! “Kumusta ka” is a Filipino way of greeting. Filipinos always say “kumusta ka” every time they see or meet someone they know or someone has just been introduced to them. I will try to say “kumusta ka” every time I see or meet someone I know or someone has just been introduced to me. Saying “kumusta ka” makes other people smile and feel happy to see, meet and be friends with other people. This is a good idea. I will do my best to say “kumusta ka” so people will…Kumusta ka.

David : These are the examples of social stories. You can see that it’s really a short, mini-story. It’s just a mini-story. It’s being read from the perspective of the person with autism as if he is the one writing the social story. At the end of the social story, you give emphasis on what the value is of that social story.
We would like to show you now what we intend to do in the Philippines. As I mentioned earlier, DAISY production is really very, very new so we still have too few experiences to really share with you but this is what we intend to do. We call it “the DAISY plan to be a part of the DAISY planet.” We want to plant DAISY in schools and therapy centers. We want to equip parents and professionals to be DAISY creators because they know better the needs of their child or, for professionals, the characteristics or preferences of their patient. We will meet the needs of persons with autism through social stories and, as you’ve seen, disaster preparedness materials. We want to give them some form of employment, possibly. Jed is just a volunteer at the Autism Society. He’s doing DAISY production almost for free. We only give him 50 pesos a day, which is not really enough even for his one-way transportation. He is doing it in our national office in Manila and it’s about a one and a half hour ride from his place. That’s the most we can offer him right now. With the right project, we’re looking forward to real employment for them to make DAISY meaningful for them as a form of employment.
Lastly, we will train more persons like Jed. We will include siblings because in the Philippines really the support of the family is the thing that keeps them going and really you could say alive. We want siblings, the brothers or sisters, to be a part of DAISY as creators. We want to take this opportunity to inform everybody here that we still have more exciting production tasks to come up soon. This development will really help speed up the so-called “proliferation” of DAISY in the Philippines. We need to build up and hasten our efforts in the following areas: research and development, training and education, information dissemination to really make everybody aware of it and, of course, integration of the technology in the mainstream. Of course, we also really need more support in terms of livelihoods for these children. We hope that this chance will now be translated into greater resources and, of course, more support for our Society. We are open for partnerships and collaborations.

In closing, we want to show you some images from the Philippines of families who are embracing autism. Like Hiroshi-san said yesterday, DAISY is a special technology and children with autism are special. Please be an angel for autism. For those who cannot see the images, just listen carefully to the lyrics.