What’s next? A digital planner for children with autism

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What's next?

A digital planner for

chi ldren with autism

I . Mansour

September 2009

OPM - 939

Master thesis ‘Design & Styling’

Industrial Design Engineering

University of Twente



What’s next?A digital planner for children with autism

Master thesis Industrial Design Engineering; Design & StylingAuthor: I. Mansour (Sara)Student number: 0025496

Date of publication: 23 September 2009OPM number: OPM - 939

University of TwenteFaculty of Engineering TechnologyIndustrial Design Engineering (IDE)P.O.Box 2177500 AE Enschedewww.ide.utwente.nl

rdgKompagneKottenparkCentrumRoessinghsbleekweg 1617522 AH Enschede

Chair:Prof. ir. A.O. Eger

Mentors:Ir. M.D.C. StilmaA. van de SandeM. Wolf B. Tijdhof

Page count: 63Appendix: 66



ForewordIn the summer of 2006 I read a book titled: Animals in Translation, by Temple Grandin.This book was an eye opener not only to the way animals act and why, but also towhat is autism. Temple Grandin is the author of several books on autism, written froman unusual perspective as she has autism herself.

Shortly after, I discovered that in the United States many solutions are available orbeing developed to help people with autism. However I could not find similar solutionsfor this group of people in the Netherlands in 2007. I also discovered that thereis a link between Industrial Design Engineering and autism; in designing productsto support this special group of people like special chairs, clothing and digitalcommunicators. This was the spring board for diving in this disorder and the differentdesign disciplines that can be implemented in such a project.

I really enjoyed working on this project. So much that it is hard to stop working on it.Working with different people from rdgKompagne, Mediant and families with childrenwith autism was very enlightening and brought the literature to life through theirexperience. I feel a lot has to be done yet. But as the wise king Solomon wrote: ‘toeverything there is a season, a time for every purpose under heaven...’. It is time to

finish this study and find a new challenge!

I hope this work will inspire more people to use their knowledge and gifts to help thisspecial and challenging group, to help ease their lives and stimulate the developmentof their skills.

Thank you and enjoy reading!

Intidhar Mansour



ForewordTable of ContentsSummeryReading notes

1 IntroductionIntroduction 05

1.1 Design process 06

1.2 Context and Problem 071.3 Design brief 07

2 Exploration2.1 Autism Spectrum Disorders (ASDs) 092.2 The target group 132.3 Planning and predictability 152.4 Communication and social skills 162.5 Communicating with signs 172.6 Sensory integration and anxiety 19

2.7 Products and autism: international 212.8 Products and autism: The Netherlands 252.9 Interface and form 272.10 Exploring the needs of people with ASDsin The Netherlands: Surveys, interviews and observations 29

3 Design Framework3.1 Planning and structure 353.2 Anxiety 37 4 Conceptualization

4.1 Ideas 394.2 The user and the story 404.3 From idea to scenario 424.4 Interface: models and tasks 464.5 Displays and controls 494.6 Form 53

5 Evaluation and conclusions5.1 Evaluation of the design process 555.2 Evaluation of the results 56

5.3 Conclusions 575.4 The next step 57

Acknowledgements 59Enclosures 59

References 61Appendix 66

Table Contentsof



"To everythingthere is a season,A time for everypurpose underheaven...A time to weep,

and a time tolaugh...a time to keepsilence, and a timeto speak...He has madeeverything beautifulin its time."Ecclesiastes 3:1,4,7 (NKJV)



SummeryThis thesis is part of the graduation project for Industrial Design Engineering atUniversity Twente, master track Design & Styling. It is conducted in cooperation withrdgKompagne.

The aim of this project is to design a product to support children diagnosed withAutism Spectrum Disorders (ASDs) in promoting a daily routine and making commonsocial activities somewhat predictable to the child.

The Dutch target group is defined in this project as: children between the calendarages 6 -12 years, and a developmental age of at least 6 years. Both males andfemales; diagnosed with ASD with an average or high functioning level. There islittle known about numbers, but it is estimated that about 16000 children in theNetherlands between 6 and 12 years old have ASDs.

Autism is a developmental disorder that affects the normal functioning of the brain. Itis characterized by the abnormal development of communication skills, social skills,and reasoning. Males are affected four times as often as females. The intensity of the manifestation of the symptoms can vary strongly from one individual to another.

Moreover, the manifestation of the symptoms can become milder over time as peoplegrow older and develop certain skills. Some people are high functioning (they canlive independently), others are low functioning (they need constant guidance andassistant). The common need of people with autism is the need for structure androutine.

Autism Spectrum Disorders is an umbrella term. The following diagnoses that fallunder this term are focused on in this project: Autism (classic or Kanner’s autism),is considered to be the severe form of the autistic spectrum, Asperger syndrome,is considered to be the milder form, and PDD-NOS (Pervasive Developmental

Disorder Not Otherwise Specified, or atypical autism), is given to individuals when thepresentation of the disorder does not meet the criteria for autism.

This project consists of three phases: exploration, conceptualization and evaluation.In the exploration phase the following aspects are explored:What is autism?Planning (executive functions) and predictabilityCommunication with symbols; the right symbol libraries for autismThe Dutch target group, its needs and preferences

These aspects have been explored by literature research, online surveys, interviews

and case studies. The detailed account of this can be found in the appendix.

The exploration phase resulted in the design framework with conditions to considerin the design of a digital assistant for children with autism. The important aspects of this design framework are: planning events in a simple way, with minimal hierarchy,indicating time, helping the user to end and begin activities and supporting planningby pictures, symbols, sound and user’s own doodles.



Reading notesThis graduation thesis consists of two major parts; the theoretical frame, and theapplication of the theory into a product. The detailed research of the needs of theDutch target group is found in the appendix. The detailed account of this research of the Dutch target group is written in Dutch in the appendix.

In this thesis two terms are used to refer to the same thing; ASDs and autism bothrefer to “autism spectrum disorders”. The term “autism spectrum disorders” refers to

classic or Kanner’s autism, Asperger syndrome and pervasive developmental disorder(PDD).As more men are affected by autism than women the pronoun “he” is mostly used.

Most of the references are listed in the main text and some clarifying definitions ornotes can be found in the footnote.

Some words in the text are printed in italics because they are important for thereader to remember, a definition, or a conclusion. Most of the time, these words areelaborated on either in the main text or in the footnote.

A point worth mentioning; the term ‘with autism’ or ‘with ASDs’ is used in this reportto refer to people who have a disorder within the autistic spectrum, as the term‘autistic person’ is considered to be insensitive. People can be offended by it in a waya person with overweight can be offended if called ‘fat guy’.



"Every normal person,in fact, is only normalon the average. Hisego approximates tothat of the psychoticin some part or otherand to a greater orlesser extent."Sigmund Freud



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1 IntroductionOur world can be a confusing place for people with an autistic disorder. Things indaily life which are ‘normal’ to most people like fluorescent lights and the soundof conversation can cause sensory overload and anxiety to people with autism.The world is unpredictable; busses might come late and someone might cancel anappointment. Most people are able to adapt to changes and unexpected events, butnot all people. For those who can’t adapt fast enough or can’t adapt at all, there is aneed to make their lives more predictable and structured and find ways to help them

cope with sensory fragmentation and anxiety.

The number of products targeting this group of users is growing, as well as thenumber of books on the subject. Although some might argue differently, most expertson autism are supporting the argument that more people are included in this groupdue to the broadening in diagnostic criteria. Experts agree that there is no cure forautism, but there are ways to make living with it easier. This means that there is amarket for products to support this group in their daily life.

rdgKompagne is a leading company in developing and distributing communicationproducts in The Netherlands. Their product range targets people with communication

disabilities caused by physical disability or mental retardation. The company is alsospecialised in adapting products to the individual needs of the client. However, aproduct targeting average or above average intelligent children with autism is notavailable on the Dutch market yet. rdgKompagne wants to explore this target groupand the market through this project. The research is conducted in collaboration withMediant, a mental health institution; literature and symposia on autism, online surveysand case studies.

There are a lot of design challenges when it comes to designing for autism. Mostdesigners do not represent the target group themselves and have little idea of what

autism is. Furthermore, while people with autism might not be able to express theirneeds, they are unique and their needs and abilities evolve over time. So the chancesfor products that fit everybody are slim. Nevertheless, people with autism share somebasic needs which will be the focus of this design. Obviously the designed product willhave to adapt to the user.

At the beginning of this project the focus of the design was on two basic needsconnected to each other in the daily life of people with ASDs:

ಌ the need for routine and structured environment ಌ the need to cope with anxiety and sensory fragmentation (sensory overload)

Because life can’t be 100% predictable, anxiety is likely to happen. When it does,

people disconnect with their routine and need to deal with the anxiety to get back tothe routine. This is the basic thought behind choosing these two aspects to focus on.

During this project the main focus shifted towards designing a product to answerthe need for routine and planning. Nevertheless, it is evident from literature andexperience that these two aspects cannot be separated in daily life and should beconsidered together in future development.



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1.1 Design processThis is a brief presentation to the design process followed in this project. See the

following paragraphs in this chapter for more details on each phase in the design

process.

Exploration Conceptualization Evaluation

Methods &tools

Literature &conferences

Onl ine survey Observing &Interviewing

✳ Brainstorming ✳ Interaction design

✳ Observing &Interviewing ✳ Discussion

Subjects ✳ Autism Spectrum Disorders ✳ Market and available solutions ✳ Communication and autism ✳ Symbols in communication ✳ Sensory integration

✳ The needs of the Dutch target group

Involved

parties ✳ rdgKompagne ✳ Twente University ✳ Mediant (GGZ)

✳ Internet userswith ASD ✳ Internet users

related to a personwith ASD

✳ Children withASD ✳ Parents ✳ Mentors

✳ rdgKompagne ✳ Twente University

✳ rdgKompagne ✳ Twente University ✳ Children with ASD ✳ Parents ✳ Mentors

Outcome

Design framework ✳ Concept drawings ✳ Storyboards

✳ Conclusions ✳ Recommendations

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1.2 Context and problemThe intensity and massiveness of the manifestation of the symptoms in a child withan autistic disorder can vary strongly, both inter-individually as well as within the sameindividual in different times in his life. Nevertheless the need for structure and routineand the need to cope with sensory overload are two things most of these childrenhave in common.

Products dealing with anxiety are mostly products that offer deep pressure to thejoints or certain parts of the body on voluntary basis. These products vary fromfurniture pieces to clothing and toys. Most of these products are not available in The

Netherlands at this time.

Environment structuring tools; like schedules and planning boards, help make a lot of daily events more predictable to the child. These tools might decrease the frequencyof anxiety and meltdowns caused by unpredicted changes in the environment. Forexample: preparing the child for the end of one activity and the beginning of a newone, helps the child to deal with this change.

At this time in the Netherlands, there are different products designed to promote dailyroutine for children with an autistic disorder. The most common types are the “Picto

agenda” (an organizer with symbols), a board with symbols or cards and paper sheetswith symbols.The main problem with these systems is that they are time consuming for thecaregiver to print out, cut and paste the symbols in order to make a schedule or anactivity manual for the child.

Another issue with these systems is the great variations in the used symbol libraries.It is not clear which types of symbols are favoured by users with ASDs, or provenby research more suitable than others for this group of people. In addition to this,there are different suppliers of symbol libraries: established companies that testtheir symbols by user panels, semi professional services that provide custom made

symbols and parents who download images from the internet or draw their ownsymbols.The reason parents do this, is that standard symbol packages often don’t cover asmany social situations as parents need to make a daily schedule, and updating thesepackages is often expensive and time consuming. Furthermore most of the availablesymbol libraries, composed of image and text, are in English which makes themsometimes less useful to Dutch children with ASDs.

1.3 Design brief Design a product to support children diagnosed with Autism Spectrum Disorders(ASDs) in promoting a daily routine and making common social activities somewhatpredictable to the child.



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"A treatmentmethod or aneducationalmethod that willwork for one childmay not workfor another child.

The one commondenominator forall of the youngchildren is that earlyintervention doeswork, and it seemsto improve theprognosis.."Temple Grandi n



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2 ExplorationThe aim of this chapter is to introduce Autism Spectrum Disorders to the readerthrough a brief historical view, the different diagnoses in the spectrum, and the mostrelevant theories that will help understand how experts look at this disorder. Thenthree aspects of autism will be presented in more depth; planning and predictability,sensory integration and communication. Because the focus of this project has shiftedto communication and planning, the use of symbols is further explored in connectionwith the target group. The information presented in this chapter is acquired throughliterature study and seminars and presentations of experts on autism during asymposium. The research of the needs of the Dutch target group through interviews,case studies and observations is also presented in this chapter.

2.1 Aut ism Spectrum Disorders (ASDs)

The disorder and its historyThe word autism stems from the Greek word ‘autos’ which means "self." This termwas first used by Eugen Bleuler, a Swiss psychiatrist, to address the characteristic of

certain schizophrenics who appeared to have their own style of thinking; the view thatthe universe revolves around oneself and that the outside world has no effect on theself (Nevid et al., 1994).

Autism is a developmental disability that comes from a neurological disorder thataffects the normal functioning of the brain. It is characterized by the abnormaldevelopment of communication skills, social skills, and reasoning. Males are affectedfour times as often as females. Children may appear normal until around the age of 30months (Autism and PDD Support Network, 2009).

In 1980 research showed that there is no connection between autism and the social-economical state of the family (which was stated by Kanner). Research also showedthat siblings of a child with autism have a hundred times more chance of havingan autistic syndrome themselves than an average child. Results of research withmonozygotic and dizygotic twins show that autism is a polygene 1 psychiatric disorder.Most likely three to seven genes are involved with the forming of autism. Childrenwith autism have more often than other children suffered from pre- and perinatalcomplications. Furthermore they show more ‘minor physical anomalies’ such asdeformed ears, hypertelorism2 and a large skull (Vandereycken et al., 2000).

The diagnostic criteria for ASDs as noted in DSM-IV-TR 3 are included in appendix VII.

1 Polygene disorder: an inherited disease controlled by several genes at once.2 Increased distance between the eyes.3 DSM-IV-TR: Diagnostic and Statistical Manual of Mental Disorders.



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Central coherence (CC): this theory assumes that people with ASDs have a weakcentral coherence. The observation remains fragmented and these fragments do notreach a unity (central coherence) where they are connected with each other and givena meaning. This is why children with ASDs get stuck on details, lose overview andpanic. (Firth 1989, 2003).

Executive functions (EF): this theory focuses on the problem of planning andorganizing. The obsessions, repetitive behavior and resistance to change areexplained by this theory as caused by lack of planning ability. (Ozonoff et al., 1991).Performing a task asks for being able to change the order of a set of activities,keeping an overview and control of that set, despite any disturbance and integrating

elements over time and space. (Pennington and Ozonoff, 1996).

The following theories are an example of an alternative view or an attempt to combinethe three theories.

Empathizing-systemizing brain (ES): Baron-Cohen (2003) suggests a theory of differences between men and women, and he positions autism, like Hans Aspergerdid in 1944, as the extreme male brain.

The socioscheme: this theory regards autism more as a variant of development

rather than a dysfunction. It focuses on the little orientation towards people and theinadequate me-other differentiation. A child with autism is insufficiently aware of ownself image and of ‘the other’ (other people), but this grows as the child grows olderespecially with children with normal intelligence. The socioscheme is a theoreticalframework that covers aspects as the impaired sense of time and space, (lack of)empathy, underdeveloped TOM and explains these by the egocentric perspectivewhich is caused by an extreme male brain (Delfos, 2005).



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Figure 2.1 Primary stakeholders: the children and parents

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2.2 The target groupPrimary stakeholdersIn a recent study (Baird et al., 2006) conducted in the United Kingdom with a totalpopulation of 56 946 children aged 9 to10 years, researchers found the prevalence of all ASDs to be 116.1 per 10 000 (about 1% of children population). The prevalence of autism and related ASDs found in this research is substantially greater than previouslyrecognized. Whether the increase is due to better ascertainment, broadeningdiagnostic criteria or increased incidence is unclear.

There are no exact numbers on how many children are diagnosed with ASDs in the

Netherlands; but if the research in the United Kingdom would apply for the Dutchpopulation, then over 16 000 children have ASDs in the Netherlands1.At this time, the NVA (Nederlandse Vereniging voor Autisme) estimates the number of people with ASDs to be more than 190 000 person (NVA, 2008). It is also estimatedthat about 5 to 17 percent of people with ASDs can live and work independently;about 15 to 20 percent of them has mental retardation and needs permanent help andsupport (NVA, 2008). In general, four times as many men as women have an autisticdisorder (Wing, 2001).

Different factors influence the choice of the age range of the children in this project:

many children don’t get diagnosed under the age of four, and the level of functioningmight be unclear under the age of six. The product might be suitable to youngerchildren, but the cognition of the age range 6 to 12 years is taken into account in thedesign. Furthermore, this age range is when the child is enrolled in school and learningbasic language skills. Because most children with ASDs need extra care and support,and children are not the decision makers on product purchase; the caregivers, mostlyparents, are also considered to be primary stakeholders (Eger et al., 2004).The primary stakeholders can be defined as follows:

Children between the developmental ages 6 and 12 years. Both males and females;diagnosed with ASDs with an average or a high level of functioning.

The parents: individuals mainly above 18; both male and female with differentbackground income and education levels.

Secondary stakeholdersOther caregivers such as nurses, therapists, extended family or teachers, areindividuals who will help the child use the product. They are considered to besecondary stakeholders in this project. These individuals are not the decision makerson purchasing the product. However, they might play an advisory role in this matter.

ಌ rdgKompagne advisors who sell or install the product or service ಌ Product developers, production, distribution and helpdesk employees ಌ Management teams of health facilities and institutions ಌ The health insurance company ಌ The government

1 Child population in The Netherlands in the ages 6 to 12 is 1,397.371 (CBS, 2009).



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Uncle Joe visited Jack’s family. Jack hasn’t seen him before, because helives abroad. Jack was excited that he was coming! He heard many funnystories about this uncle. But when his uncle grabbed him to give Jack a hug,he panicked and started screaming. After Jack had calmed down in hisroom, his mother made a cartoon for him to explain that his uncle did thatonly because he liked him so much and missed him, and he didn’t know thatJack didn’t want to be touched. Jack though about the bully at school whograbbed him last week and wouldn’t let him go even when Jack startedscreaming. Jack didn’t know what was going to happen to him and wasscared. His mother tried to explain the difference in intentions between hisuncle’s and the bully’s as often seen in facial expressions.

Figure 2.2 Comic strip conversation

Figure 2.3 Visual schedules (Rogers and Myles, 2001), p.119



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2.3 Planning and predictability

Schedules and cartoonsPeople with an autistic disorder are generally not flexible. They show resistance tointerrupt the activity they are engaged in. This is because of the problems in adaptingto and processing new stimuli. They also lack a sense of time and this gives themproblems with planning.

There are two general causes of resisting change. The first is a change imposed fromthe outside; like announcing that the current activity will stop. The child may haveanxiety and show resistance or aggression because of the unpredictability of the next

step.

It is important not to stop any activity abruptly. But to first offer something else andthen explain when and why the first activity has to stop.The second cause for resisting change is preventing an unpleasant feeling. Childrenwith autism seek a pleasant feeling by engaging in activities, rituals, obsessions etc.that provides them with a feeling of security. A new activity must fade into the activitythe child is already engaged in; otherwise it will provoke resistance (Delfos 2005).

Research shows that visual support like schedules and cartooning enhance theprocessing abilities of persons with ASDs (Rogers and Myles 2001). Cartooning ismaking a sketch of social situations either to explain them in advance or to explain amisunderstood problem afterward, or using a hero figure as an example for behavior.Using Popeye the sailor man to encourage children to eat spinach is an example of this. Figure 2.2 shows an example of how to explain a social situation to a child whenhe fails to ‘read’ the signs of the intentions of the other.

Visual schedules can take an abstract concept like time and present it in a moreconcrete and manageable form. They allow children to anticipate upcoming eventsand activities and develop an understanding of the concept of time. Dependingon the level of functioning, high functioning children feel more comfortable when

allowed to participate in preparing their own schedule. This should be the firstactivity in the morning. It is also important that the daily schedule blends well in thechild’s environment, so minimal attention is attracted to the fact that the child uses aschedule, if other children are not using similar tools. Figure 2.3 shows an example of visual schedules (Rogers and Myles, 2001, p.112 and 119).

Maps of locations and timelines give the child also a sense of space and time and canbe an important aid in getting through the day (Myles and Southwick 2005).



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2.4 Communication and social skills

Communication developmentPeople with autism have serious communication problems regardless of theirfunctioning level. Often language development is impaired and in many childreninsufficient to meet their daily communication needs (Noens, 2007). Also theyoften fail to communicate nonverbally by pointing, gestures, eye contact, jointattention1 or facial expressions (Mundy et. al, 1994; Delfos, 2005; Wetherby, 2006).Communication problems become even more severe when accompanied by mentalretardation.

In recent publications (Noens and Van Berckelaer-Onnes, 2005; Travis & Sigman,2001; Wetherby, 2006) impairments in intentionality 2 and symbol development3 aresuggested to be core problems in communication development of children with ASDs.Children begin to express intentionality during the last three months of their first year.The development of pointing gesture is a crucial milestone here. Children with ASDsuse this often in protoimparative situations (communication to get something) butless in protodeclarative situations (communication to share an experience). Symboldevelopment usually occurs in the beginning of the second year.

Stimulation of normal development is essential. Autism always shows both delayedas well as abnormal development of language function, social relations and cognition.During the stimulation of the normal development, the current development level of the child should be considered as the starting point, to avoid under- or overcharging(Vandereycken et al., 2000).

Social skillsSocial skills and interaction with others are a major problem area for people andespecially children with ASDs. These problems vary from child to child. Children withclassic autism are frequently withdrawn, while social awkwardness occurs frequentlyin Asperger syndrome and angry outbursts occur more often in PDD-NOS. However,

all three occur throughout the autistic spectrum (Delfos, 2005).

According to the socioscheme theory; the inadequately mastering of social skills inthese children is caused by the lack of social insight, which is caused by the problemswith TOM. These children can learn social “tricks” but they cannot judge when thesetricks should be applied and they have problems adjusting to situations. Explainingsomething works best when short and repeated, giving space to experience. Themental age4 of the child should be considered here.

Structuring the environment is a necessity. Particularly in unstructured environment

the child tends to lose himself in rituals. Presenting environmental changes in smallsteps, preventing big unexpected or fast changes and promoting the daily routine of the child’s living environment are the basic principles here (Vandereycken et al., 2000).

1 Appendix p.7, presentation of prof. dr. P. Mundy (2007)2 The communication of the purpose and meaning behind words, gestures and facial expressions.3 Understanding the relationship between the symbol and its referent and that the symbol can substitute the referent in

variable situations, but the two are distinct entities.4 Developmental age which can differ from calendar age.



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2.5 Communicating with sign

Icons, Indices and symbolsSigns have already been used for communication in ancient times, engraved in stoneor clay. Today many children with autism benefit from this form of communication.

There are four levels of perception, sense making and communication: sensation1,presentation2, representation and metarepresentation. For understanding the meaningof a sign, the level of representation is required. At this level the individual is awarethat the sign and the referent are two different entities linked to each other by ameaning. High functioning people with autism reach this level of perception, but they

rarely reach the level of metarepresentation where they can understand informationbeyond the literal meaning, like jokes and sarcasm (Noens and Berckelaer-Onnes,2004; appendix I).

In one of his best known theories on signs, Charles Peirce made a differentiationbetween three kinds of signs: icons, indices and symbols. This typology emphasizesthe different ways in which the sign refers to its object (Mourik and Mijksenaar, 1999).

ಌ The icon refers to an object by a quality of its own; it shows a strong resemblanceto the object. For example: a portrait is an icon of a person.

ಌ The index refers to an object by a real connection; it is indirect but not abstract

and recognizable. For example: a bandage refers to a hand wound. ಌ The symbol refers to an object by a habit or rule for its interpretant; it is an

arbitrary simplification of the object. The meaning must always be learned.

Using signs has some limitations. Iconic or not, most of the time they must be learned.Their meaning is something that is agreed upon and can be cultural dependent.Women’s toilet doors are identified by a figure wearing a skirt; although, most westernwomen wear trousers.Another limitation for children might be that signs refer to something that the usershould already be familiar with. An Index does not teach the child what a wheelchairis, but uses it as an indicator for something else assuming that the child alreadyknows what a wheelchair is. Furthermore, not every object is easy to visualize in asign. Verbs and activities are in general more complex to visualize than nouns.

However, when good designed; they are easy to learn and to remember by visual

association, fast to recognize and somewhat language independent.

From this point forward the umbrella term 'symbol' is used as a general representationfor nouns and verbs; as it is used in literature on autism. However, objects are often

1 The detection of a stimulus in the environment and forming a sensory experience with no functional insight. Example:the toothbrush is a constellation of stinging.

2 The perception of information in concrete context. The functional meaning must be present. Example: the toothbrushwith toothpaste is only meaningful in the bathroom on the washstand.

Icons

recycle bin John Doe telephone

Indices

exchange wound disability

Symbols

bleach tumble dry dry-clean



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represented by icons while nouns and verbs are mostly represented by indices or

symbols. Paragraph 2.10 presents the results from the online survey on symboltypes. It is clear that icons (pictures) are favoured by the respondents as a staticrepresentation to verbs. Sign typology can help in choosing the right symbol libraries.

Symbol librariesThere are a lot of different symbol libraries used to support communication. Researchdone with people who have multiple handicaps shows that the following libraries arefavored based on aspects like: direct recognition, deducibility, realism, contrast, detailand simplicity (Van Balkom et. al., 1994; Welle Donker and van Balkom, 1995):

BLDK BLDL PAM PCS Visitaal

Figure 2.4 Symbol libraries (Welle Donker and van Balkom, 1995; p. 71, 80, 134, 139, 180)

BLDK : Bildkommunikation (black on white, realistic drawing, detailed)BLDL: Beeldlezen/Maria Roepaan (black on white, line art, curled arrow for verbs)PAM: Pameijer Pictograms (black on white, realistic drawing, detailed)PCS: Picture Communication System (black on white or coloured, line art, detailed)Visitaal : or Vijfhoek Pictograms (white on black, silhouette, minimal details)

Although this research does not indicate which symbol libraries are suited forchildren with autism, it formed the basis for the research done in this project. Thedetailed research can be found in appendix II and III, and the results can be found inparagraph 2.10.



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2.6 Sensory integration and anxiety

Problems in sensory integration of stimuli and anxiety are often the cause of outburstand tantrums. This paragraph presents a model of the moments solutions (products)can be implemented to prevent an outburst or deal with the aftermath of it.

Sensory integrationImpairments with modulating incoming sensory input are widely reported in literaturedescribing autism characteristics. The sensory input seems to stay fragmented.

According to research about 40% of children with an autistic disorder havehypersensitivity of one of the senses (Rimland, 1990). Sometimes the sensitivity of acertain sense is not the same every day possibly due to hormonal changes. Theseproblems usually decrease with age. Children might experience sensory stimuli likewhistles sounds, certain foods or textures as unpleasant (Delfos, 2005).

There is also the problem of hyposensitivity of the senses. In a recent study 95% of the studied children with ASDs in the ages 3 to 6 years showed under-stimulation asimpairment in sensory processing. They often seek tactile stimulation, put things intheir mouth and seek strange noise or movement (Tomchek and Dunn, 2007).

Anxiety and outburstsChildren with an autistic disorder suffer a great deal of anxiety partly because of theproblems in understanding social situations which cause stress. This anxiety canmanifest itself in a number of behaviors like angry outbursts (tantrums or meltdowns)or social withdrawal. Anxiety is an important issue for children with autism especiallyfor children with Asperger or PDD-NOS (Delfos, 2005).

Tantrums are considered to be a form of communication and can be caused by thefollowing (Notbohm, 2005; Delfos, 2005):

ಌ Sensory hypersensitivity (taste, touch, hearing, vision, smell) ಌ Physical or physiological overload (food allergies, unidentified illness or injury, etc) ಌ Emotional motivations (frustration, disappointment, etc) ಌ Resistance to change

Research shows that there are some solutions that can benefit a child with autism incalming down. Understanding how the ‘rage cycle’ works helps to implement the rightsolution at the right moment (Myles and Southwick, 2005; Buron, 2003). The ragecycle children with Asperger go through consists of three stages: the rumbling stage,the rage stage, and the recovery stage. These stages can be of variable length. Thechild cannot learn any new skills during this cycle. Only at the end of the cycle there isa chance for learning. See figure 2.5 for a model of the rage cycle.

One of the techniques used in the rumbling stage to deal with the situation ispromoting the routine of the child by showing him his schedule. Calming techniquesand providing structure are useful in the recovery stage. Everything must be done toprevent the rage stage.



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Deep pressure

Temple Grandin, an animal scientist who herself has autism, describes in her booksthe calming effect of deep pressure (Grandin, 2006). She developed the ‘squeezemachine’ (see paragraph 2.7). Another product that she recommends is a paddedweighted vest to help the child sleep at night. She also recommends firmly strokingthe body with soft surgical scrub brushes to reduce the touch hypersensitivity.

Van Rijn (2007) reports her observation of three children with autism who all enjoydeep pressure. Her video recordings show one of the children enjoying an activitywhere his therapist firmly rolls a big inflatable ball over him, while he is lying down on amattress. She also mentions the children squeezing products made of foam possibly

because of the pressure experience. Beanbags also seem to give a pleasant pressureexperience.

Action, rhythmic movement and mild vibrationsAction can reduce anxiety. Children develop some coping mechanisms to reduceanxiety like: obsessions, rituals, hand flapping, rocking, hyperactivity, isolation,etc. (Delfos, 2005). Delfos states that babies with autism sometimes sleep better if they feel mild vibrations against there cheek like from a music box (if they are nothypersensitive to the sound).

One of the therapies that Grandin (2006) recommends in her book is slow swinging ina frequency of about ten to twelve times per minute. This helps to stabilize abnormalsensory processing.

Figure 2.5 Intervention model



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2.7 Products and autism: international

PlanningIn the Netherlands and also in other countries, symbol libraries are used to visualizeschedules and give daily structure to children with an autistic disorder.Although these symbol libraries are digitally available, parents and other caregivers stillprint them out on paper and stick them on boards, files, cards or agenda’s. This couldbenefit low functioning children who need to hold the symbol in their hands becausethey perceive the world at the level of sensation and presentation. But for highfunctioning children, who are able to use computers and other electronic devices likegame consoles; printing, cutting and pasting symbols is time and energy consuming

on the part of the caregivers and gives these intelligent children little space to learn toplan.

Here are some of the most used tools to support children with ASDs in their dailystructure and in dealing with anxiety. There are a lot of software packages andAlternative and Augmentative Communication (AAC) devices for the purpose of assisting in communication through symbols. The following are among the popularsolutions. Some of these solutions are useful to consider in the design of a digitalplanner for children with autism, like the timers and the portable size. Some aspectsshould be avoided; like the inflexibility of software to adapt to the user’s needs, andthe incompatibility of hardware with other common digital devices.

ColourClock and Time Timer The idea here is to make an abstract concept like time tangible 1.The dial of the ColourClock is divided in fixed time blocks with fixed colours.Yellow, for example, stands for 20 minutes and light blue for 10 minutes. TheColourClock has one pointer that can be set to the beginning of the desired timeperiod. The time passes as fast as with any regular clock.The Time Timer works by setting the pointer to the desired number of minutes andletting it go. The chosen number of minutes until the finish will show in red. Both of these solutions are available in desktop model, wrist watch and digital clock.

Paper charts and stickersThere is a great variety of products available to this purpose. There are differentsuppliers of symbol libraries: established companies like Mayer-Johnson; semiprofessional services that provide custom made symbols, like Pictomaat2; and parentswho download images from the internet or draw their own symbols. The availablesymbols may not be suitable to all children. For example; some like colors, others findcolors distracting.The symbols sold are delivered mostly as stickers to stick them on boards, plannersand worksheets, or digital to make paper charts. Symbol cards in clear plastic sheetsare used in an album like case to create planners. A popular product that is usedin the Netherlands for visual planning is the Pictoagenda3. The stickers of Visitaalsymbols are placed in a diary to create a schedule.

1 ColourClock www.kleurenklok.nl and Time Timer www.timetimer.com2 www.pictomaat.nl3 www.pictogenda.nl



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Figure 2.6 Products targeting people with ASD

Time Timer� 25,-

ColourClock� 25,-

Tango� 4905,-

BoardMaker� 426,-

SFW� 255,-/450,-per program

Widget� 80,-

PEAT� ?

CHATPC-M3� 1875,-

Paq 1422,-

Squeeze machine� ?

BioHug� ?

V & Vmax� 5435,-/ 5986,-

Squeeze chair � ?

Squeeze machine� 355,-

Pictoagenda� 27,50

Pictomaat� 45,-/100,-



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Mayer-Johnson software

Mayer-Johnson1 offers a family of products designed for various needs. Boardmaker software with integrated 4,500 Picture Communication Symbols® (PCS) library incolour and black and white is used to make schedules and worksheets. Boardmaker Plus package offers the interactivity of voice, using Speaking Dynamically Pro softwareand animations and video and the capability to draw symbols, record voice and playrecorded sound. It allows users to create talking activity boards, worksheets andschedules.

Symbol for Windows softwareWith this software package3 users can make schedules, charts, worksheets, etc.using symbols. This software uses the symbol libraries most used in The Netherlandsand Flanders. These libraries are: Bliss, Beta, PCS, Visitaal and written text. Inaddition to this, users can add their own pictures and illustrations.

ChatPC-M3 digital communicator The ChatPC M3 is a PocketPC that has been modified for use as a communicationdevice (Saltillo, 2009). The device comes with Pocket Word, Pocket Excel, a calendarand a calculator. It has speech and voice recording capabilities. This system uses PCSsymbols.

iPAQ and PEAT PDA digital communicator

The iPAQ model of PDA’s is widely used with variety of software like The Pocket Gridsoftware witch is a portable version of The Grid software. Many other models of PDA’sare used for the same purpose which will not be mentioned here in details. The PEATPDA2 is developed by a NASA researcher. He developed a digital scheduler to assistspatients with cognitive disorders.

DynaVox V and Vmax digital communicators These products come with Windows XP, software, Boardmaker software, SpeakingDinamically, environmental control functions, internet and e-mail.

The Tango digital communicator This communicator has a horizontal oriented interface, about 2000 prerecordedphrases, built in camera and the ability to create photo albums. It targets children withdiverse disabilities3.

CalmingPadded and weighted clothingThe BioHug4 project is an example of a promising project based on the idea that deeppressure and certain frequency of pulsation calms the wearer down. It emulates thepressure from a hug.

Weighted blankets are used for the same purpose. However products that give theuser control over regulating the pressure are more desirable and successful thanothers.

1 www.mayer-johnson.com2 www.sti.nasa.gov/tto/Spinoff2007/hm_3.html3 www.blink-twice.com4 www.lngreentech.com and http://vimeo.com/1904061



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Figure 2.7 Product range of rdgKompagne

Time Timer

€ 33,-/66,-

Symbol for Windows Paper

Chart Maker

For making and printingcommunication cards.€ 238,00

TouchSpeak on

PDA

TouchSpeak is astandard Pocket PCwith communicationsoftware. Includes atype module and adrawing module.€ 3.766,35

Tellus

Smart

CompactPocketPC,same as

Tellus Mobi.With MindExpresssoftware andPCSsymbols. € 4896,00

Tellus Mobi

Is compact with touchscreen, and suppliedwith Mind Expresssoftware with voicerecoring. Designed foruse while moving.€ 7906,00

VS Communicator

VS Communicator is aprogram that easilymakes dynamiccommunication cards.Standard cards can beadjusted and new cardscan be made withdifferent forms, colours,pictures, text andsymbol libraries.€ 250,00

Mind Express

is used to makepaper communicationcards and has speechoutput and wordprocessor withsymbols. Symbollibraries: Bliss, PCS,Beta, Visitaal, PictureThis or own pictures.Lite € 135,00

Infovox Desktop Pro

This software turns text intowords in speech using thesound card of the computer.It is also known asBrightSpeech. This vocoderis based on a database of diphones spoken in withhuman voice.€ 218,00

Fluency TTS

This software turns textinto words in (artificial)speech. It includes 9voices (male, female, childand some funny voices).€ 250,00



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The squeeze machine and squeeze chairs

The squeeze machine1 is designed by Temple Grandin and it consists of two paddedside boards which are hinged at the bottom to form a V shape. The user steps intothe machine and lies down on the inside in the Vshaped crevicelike space. Theinside surfaces of the device are completely lined with thick foam rubber. Deep touchpressure stimulation is applied along both sides of the person's body. The importantaspect here is that the user has complete control over the amount of pressure appliedusing a lever-operated pneumatic valve, which is connected to an air cylinder thatpulls the side boards together. The user can also enter and leave the machine at will.Research shows that children who use this machine for more than five minutes a dayare calmer than children who do not.

Squeeze chairs are being designed by different designers for people with ASDs andADHD. They are based on the concept of the squeeze machine but look more user-friendly and probably less stigmatic.

2.8 Products and autism: The Netherlands

rdgKompagnerdgKompagne2 is part of RDG (Roessingh Diensten Groep), a company with varietyof services to aid people with divers disabilities. rdgKompagne consults userswith physical or mental limitations on the selection of computers, adaptations forwheelchair users and alternative augmentative communication (AAC) devices. Withits three branches, it is the largest distributor of AAC devices in the Netherlands.rdgKompagne assists institutions with the development of software and educationmaterials for assistive communication. Most of the distributed products are coveredby health insurance companies in the Netherlands. Reha Media is the German partnercompany which supplies the same product range to the German market.

Product rangeThe products which rdgKompagne supplies are divided into the categories:communication, computer adjustments, environment control, software, andadaptation. rdgKompagne supplies Time Timer, Mayer-Johnson and SymbolFor Windows software that are presented in the previous paragraph. Softwaremanufacturers like Mayer-Johnson often sell different licenses to hardwaremanufacturers, from whom rdgKompagne imports the ACC devices. This results indifficulty to express the needs of the Dutch target group concerning symbol libraries.As for the AAC devices; these are not always compatible with other common digitaldevices. This makes some of these products less flexible in use.

The following solutions, presented in figure 2.7, are available through rdgKompagneto the Dutch market at the moment. These solutions target a wide range of users withdisabilities, varying from ALS to aphasia. rdgKompagne is exploring the possibilities of targeting people with autism in The Netherlands more effectively with new solutions.

1 www.grandin.com/inc/squeeze.html2 www.kompagne.nl



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Figure 2.8 bad website design

Figure 2.9 good website design



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2.9 Interface and form

The results from the online survey (paragraph 2.10) indicate that the majority of thequestioned children, under the age of 12, play computer games. Almost half of thesechildren have internet access. This means that a large number of children with ASDsare familiar with interfaces of computer games and website layouts.

WebsitesThe website presented in figure 2.8 of CBBC1 is an example of how overloadedchildren’s websites are with visual materials and sounds. Elements that are known

to cause distraction to children with ASDs are: bright colours, characters in differentshapes and colours, embedded sounds in the background that cannot be turned off or the off button is too small to see immediately, continuously animated figures andthe scattered categories that demand a lot of visual scanning (MTT, 2007).

There are three main problems with searching and navigating tools for children:ಌ They do not take into account the information processing and motor skills of

children (Hourcade et al. 2004). ಌ They do not consider children’s searching and browsing skills, specifically their

difficulties with spelling, typing, navigating and hierarchies (Borgman et al. 1995). ಌ They do not consider how children prefer to search; choosing based on

appearance (Druin et al. 2001).

Good interface design for childrenThe website presented in figure 2.9 of ICDL: International Children’s Digital Library2, isan example of a better design for children’s interfaces. It is achieved after an extensiveresearch with children as participants (Hutchinson et al., 2006). Important conclusionsfor the design are:

ಌ Represent visual buttons and links by symbols or pictures. ಌ Use round rather than rectangular icons for the buttons. Icons with 64 pixel

diameters are sufficient for children as young as 4 to click (Hourcade et al., 2004). ಌ Buttons supported by sound; telling the content of the button by hovering on it. ಌ Categories that can’t be selected anymore, due to a previous selection, should be

grayed out to avoid confusion. ಌ Children are impatient; the interface should respond immediately or provide a

progress bar to avoid multiple clicking. ಌ Minimize visual scanning of the page by grouping categories. ಌ Multiple paging is preferred over scrolling. And a one-page-design is best. ಌ Avoid using hierarchies and flatten them to a single layer presenting multiple

facets simultaneously and hereby eliminating much of the navigation. ಌ If hierarchies are inevitable, inform the user of his place at all times (Krug, 2006)

ಌ Prominent results could be placed in the middle of the page. ಌ Blue-violet and green lights have a calming effect (Mahnke, 1996). ಌ Giving a sense of control; no continuously animations or sounds.

1 www.bbc.co.uk/cbbc2 www.childrenslibrary.org



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Brains and interfaces

The used interface should enable different users to learn and interact the way theirbrains work best. Temple Grandin (2006) indicates that all people on the autisticspectrum think in details and that there are three basic categories specialized brains.Some individuals may be a combination of these categories.

ಌ Visual thinkers think in specific images. Most of these children like maps andphotographs. They often love art and building blocks, such as Lego’s.

ಌ Music and math thinkers think in patterns. These children like music. Writtenlanguage is not required for pattern thinking. They can have strong associativeabilities. They like finding relationships between numbers or musical notes.

ಌ Verbal logic thinkers think in word details. These children may be poor at drawing.

They love lists and numbers.

Boys and girls toysSince children are by nature attracted to games and playing, an association to thesefamiliar products make it easier for the child to like the new product. Figure 2.10shows products children use that can be associated with the new product.

In a study, Blakemore and Centers (2005) found that neutral and moderatelymasculine toys were rated higher by adults (25% parents) on several scales relatedto developing various skills, especially as compared to strongly stereotyped toys

for either gender. Neutral and moderately masculine toys were rated higher on theireducational value, their scientific qualities, and their stimulation of physical andcognitive skills. Figure 2.11 shows the characteristics of moderately masculine toysfor the ages 6 to12 in the lower middle, based on the chart of Wallace and Kudrowitz(2008). Raven (2007) shows in her research on the preference of men and women forthe aesthetics of a PDA that neutral colours; black, white and metallic, with or withoutcolour accents, are preferred. Also women prefer white as a basic colour while menprefer black.

Figure 2.10 portable products Figure 2.11 boys' and girls' toys (Wallace, 2008; sheet 33)



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2.10 Exploring the needs of people with ASDs in The

Netherlands: Surveys, interviews and observations

As part of this project, a research has been done to understand the target groupbetter through practical experience, to explore the needs of the Dutch target groupand to gather information about everyday problems and solutions. Because of thelittle information on symbol types and autism, the preference of the target group isexplored in this research. Different methods have been used in this research: an onlinesurvey, observation at a school for special education and a play therapy session,interviews with parents and case studies.

Online surveyGoal: explore the Dutch target group, their needs for using symbol libraries inplanning, their preferences for using a certain type of symbols for nouns and verbsand their use of products to cope with anxiety.

Response and conclusions:A total of 118 people responded to the online survey. There are two kinds of surveys;one is filled in by people who have ASDs themselves and the other is filled in bypeople who are related to a person with an ASD, either family or caregiver.Unfortunately not all the questions have been answered by the respondents becausea problem in the code of the survey allowed respondents to skip questions. Howeverbecause of the large number of response, the least number of good responses toa question was 53, which is still a good number of responses to analyze and formconclusions. The detailed questions, analysis and conclusions of the online surveyscan be found in appendix II, III and IV.

Identity and gender ಌ The product should be appealing to men and women.

Although about twice as many men as women responded to the online survey (78men and 40 women) and autism is characterized by an extreme male brain (Baron-

Cohen, 2003), the preference of the caregivers is also relevant. At least 76% of thegroup caregivers who responded are women.

Diagnosis ಌ The product should be designed for a user of an average intelligence

The most frequent diagnosis among the respondents of the survey is Aspergersyndrome (44.3%), which generally applies to people of average to high intelligence.32.2% of the 118 respondent have the diagnosis PDD-NOS and 20.9% of therespondents have the diagnosis autism.

Age ಌ The preferences of the caregivers of the age group 6 to 12 years are important.Of the 118 respondents 117 indicated the age of the person with ADSs. Therespondents have been divided into seven age groups. The age group 6 to 12 yearshas 26 respondents. In the case of all 26 respondents a caregiver took the onlinesurvey to represent them. The largest age groups to give response are the groups19 to 30 and 31+ with respectively 31 and 35 respondents. The response of the agegroup under 6 years was very low with only 7 respondents.



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Education level

ಌ The product should be suitable to use in regular and special elementary education.

Most of the 26 respondents in the ages 6 to 12 years are engaged in regularelementary education (14 respondents) and a small number is engaged in specialelementary education (9 respondents). These children are mostly diagnosed withAsperger syndrome and PDD-NOS.

Functioning level: common portable devices and interfaces ಌ The product should assist the development of the language skills: reading, writing

and speaking. And if required, offers an alternative to the impairment in theseskills.

Writing is the least developed skill according to the respondents. 57.6% of 118respondents indicated good writing skills. While only 30.3% of the respondents inages 12 years and younger indicated a good ability to write.

ಌ The interface and use of the product should be comparable with that of a gameconsole and a web browser.

Almost all of the 118 respondents (95.7%) indicated the use of a remote control,and the percentage of the use of this common portable device is also high amongchildren in the ages 12 years and younger. The use of an MP3 is clearly lower amongthe respondents in general (43.2%) and the ages 12 years and younger in particular

(15.2%). 75.4% of all respondents and 48.5% of the respondents in the ages 12 yearsand younger use the internet. Playing videogames is a common activity in the ages 12years and younger (84.8%). It is safe to conclude that an association can be sought inthe design with portable objects the child already uses like game consoles, electronictoys and internet browsers.

Symbol libraries ಌ The product should have symbol libraries like: PCS in colour and in black

and white, PCS animations, pictures and the ability to add own pictures and illustrations.

ಌ

The first preference for representing nouns is a picture, and the second preference is a static PCS symbol. The first preference for representing verbs isan animated PCS symbol that loops for a fixed number of times, and the second preference is a picture of the situation.

PCS Visitaal Picture BLDL PCS Visitaal Picture BLDL

The research done here focuses on the preference of the user. The separate designparameters of ‘symbols’, such as colour, detail, contrast, recognition, etc. have notbeen separately researched for this target group. Four symbol libraries have beenresearched to find out which is more favored by the Dutch target group. Theselibraries are: PCS (coloured), Visitaal, coloured pictures and BLDL. In addition tothis, PCS animations, Visitaal animations and animated coloured pictures havebeen compared as representations of verbs. Children with autism have difficulty to



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understand dynamic scene cues (like verbs) when represented by a static illustration

(Shane et al., 2009; appendix I). For example: a symbol is perceived as “man onladder” rather than “man climbing ladder”.

The results from the online survey indicate that coloured pictures are the favorite staticrepresentation for nouns chosen by the respondents. 70.9% chose coloured picturesas first preference for nouns and 75.4% chose them as first preference for verbs whencompared to other static representations. This is not surprising, because pictures areicons and icons are the easiest signs to recognize (see paragraph 2.5). 62.5% of therespondents chose coloured PCS animations as first preference for representing verbsover animated pictures (movie clips) and over animated Visitaal. When comparing astatic and an animated PCS symbol, representing a verb in a list of tasks (agenda like),53.8% of the respondents chose PCS animation over a static PCS symbol.

During a discussion of the survey on an online forum for people with autism, severalpersons made the same comment about animated PCS ‘symbols’. Verbs should berepresented by an animated PCS symbol that loops for a fixed number of times andthen stops to avoid distraction of the user. For example: the verb ‘running’ would berepresented by a PCS animation that loops 5 times then stops. The animation couldalso be started on command by the user. This will give the user a sense of control.

Anxiety and solutions

62.6% of the respondents indicated that they experience anxiety more than once aday. The most indicated causes of anxiety are misunderstanding, change and certainsocial situations that require interaction. The respondents in the survey did notindicate the use of any specific product to help them calm down. They show a fight orflight behavior to cope with their anxiety or outbursts.

Structure ಌ The product should be suitable mainly to be used indoors.

47.8% of the respondents who use ‘symbols’ in planning are in the ages 6 to12 years.More than half of all respondents (53.7%) indicate the need for solutions to assist in

planning. Most of these respondents have the diagnosis Asperger syndrome and arebetween 19 and 30 years old. About 20% of the children in the ages 6 to 12 yearswould like to have assistance in planning, mostly indoors.

Observation at schoolGoal: gaining insight into life with autism through observing children at school andexploring used products.

One of the three children who participated in the case studies, a four year old girldiagnosed with classic autism, goes to elementary school ‘De Zevensprong’ in

Oldenzaal. Her parents and teacher gave permission to observe her at school. DeZevensprong is a school for special education. All the children in the class where theobservation took place have ASDs. The detailed account of the observation can befound in appendix V. The following products are being used at this school:

ಌ A special chair that tightly fits the child is used to keep a boy calm that otherwisedoesn’t stay seated. When this fails he has to take a time-out in the corridor.



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ಌ The ColourClock is used in the classroom to indicate time and change of

activities. ಌ Also every colour of the ColourClock stands for a type of activity. For example:

yellow means free time and red means group activity. ಌ Some children have a special low sensory work space. It is closed on three sides

of the table so the child can only see things on the table before him. ಌ The symbols used in this school are mostly Visitaal, but they also use PCS

symbols. The teacher did not indicate any relevant preference.

Figure 2.12 low sensory work space, special chair, group activity area

Case studiesGoal: gaining practical insight in daily life and activities of children with autism andexploring the potentials of using a portable device to support daily routine.

Methods: interviews and games.

Three children participated in the case studies; two six year old boys diagnosed withAsperger syndrome and one four year old girl diagnosed with classic autism. Thedetailed account of this research can be found in appendix VI.Before the visit to the three homes, the parents received a letter with a questionnaireto fill in (for an example, see appendix VI). After a short interview and discussion of theanswers to the questionnaire, the children played three games.The mother of the girl indicated the purchase of Pictoagenda, but that it was too timeconsuming to use. Another parent said he wanted to buy a PDA for his son to helpwith planning. Furthermore, the three families indicated having a fixed daily routine.

Game 1: sort the cards

The first game is designed to explore the preference of the child for a symbol libraryto represent nouns and verbs. The child is presented with symbols printed oncardboards and asked to sort the cards according to his preferences.All three children choose either PCS symbols or pictures as their first preference.The choice their parents made when asked beforehand about what they thought thepreference of their child would be for a symbol, was similar to the actual preferencethe child indicated.



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Game 2: explore Dynamo

The second game is designed to explore ability of the child to interact with a portablecommunication device, Dynamo (an AAC1 device distributed by rdgKompagne), byreading, pushing buttons and listening to pre-recorded messages on the device.The three children had some difficulty with the symbols on the screen, but combinedwith text or pre-recorded speech they could understand the meaning. This difficultyin understanding and delay in response might be caused by the poor contrast andresolution of this device. Because in the third game with the Qtek PDA, the childrenneeded less time to identify the symbols.

Game 3: guess the digital symbols on a PDA screenThe third game is designed to explore the ability of the child to interact with a portablecommunication device and his preference to a digital symbol library on screen.The children were presented with four sheets of different symbol libraries on theQtek PDA, each sheet containing three symbols. It was obvious also to the parents,that Visitaal symbols and especially Visitaal symbols with more than one figure arethe most difficult to identify. The children took a longer pause before guessing whatthe symbol was. This is not surprising. Literature indicates that symbols with onedominant figure are better to understand than composite signs (Mourik and Mijksenaar1999). The easiest symbols to identify were the PCS (animated) symbols and pictures.However, it is possible that the PCS animations distracted the four year old girl,because she was faster to identify the static PCS symbols.

Figure 2.13 game 1: cardsgame 2: Dynamo (movie: click to play)game 3: Qtek PDA (movie: click to play)and sheets on Qtek

(left to righ):sheet 1: PCSsheet 2: PCS animatedsheet 3: Visitaalsheet 4: Picture

1 Alternative Augmentative Communication.



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AppendixI. Lezing & Symposium verslagen (NL) 67II. Survey-onderzoek vragen (NL) 73III. Survey-onderzoek analyze (NL) 77IV. Survey-onderzoek conclusies (NL) 104V. Observatie verslagen(NL) 106VI. Case study verslagen (NL) 110VII. DSM-IV-TR: ASDs 120VIII. Brainstorm session 122

IX. Interface concepts 124X. Sketches 126

Table Contentsof



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IV. Survey-onderzoek conclusies (NL)

ResponsIn totaal hebben 118 respondenten deelgenomen aan de vragenlijsten voor mensenmet ASS en familie van een persoon met ASS. Niet alle vragen goed beantwoord. Hetminst aantal goede antwoorden bij een vraag is 53 goede antwoorden. Dit geeft nogsteeds een mogelijkheid om analyse en conclusies te trekken.

Identiteit en geslacht ✳ Het product moet zowel mannen als vrouwen aanspreken.

Hoewel ongeveer twee keer zoveel mannen als vrouwen aan dit onderzoek deelhebben genomen (78 mannen en 40 vrouwen) en autisme is gekarakteriseerd als

een extreem mannelijk hersentype (Baron-Cohen, 2003), is de voorkeur van deverzorgers (meestal vrouw) relevant. Minstens 76% van de groep verzorgers van derespondenten is vrouw.

Diagnose ✳ Het product moet een gebruiker met een gemiddeld intelligentie aanspreken met

aanpassingsmogelijkheden voor gebruikers met hoge intelligentie.De meest voorkomende diagnose onder de respondenten is Aspergersyndroom(44.31%). Deze diagnose geldt meestal voor mensen met gemiddeld tot hogeintelligentie. 32.2% van de 118 respondenten heeft de diagnose PDD-NOS en 20.9%

van de respondenten heeft de diagnose autisme.

Leeftijd ✳ De voorkeuren van de verzorger van de leeftijdgroep 6-12 jaar zijn heel belangrijk.

Van de 118 respondenten hebben 117 een leeftijd aangegeven van de persoon metASS. De respondenten zijn verdeeld in zeven leeftijdgroepen. Er zijn 26 respondentenin de leeftijdgroep 6-12 jaar. In het geval van al deze 26 respondenten, heeft eenverzorger de online vragenlijst ingevuld om ze te representeren. De grootste groependie respons gaven, zijn de leeftijdgroepen 19-30 jaar en 31+ met respectievelijk 31en 35 respondenten. De respons van de leeftijdgroep onder 6 is heel laag met 7respondenten.

Opleidingsniveau✳ Het product moet geschikt zijn voor gebruik in het regulier en speciaal

basisonderwijs.14 van de 26 respondenten in de leeftijden 6-12 jaar volgt een regulierebasisonderwijs, en een klein deel volgt een speciaal basisonderwijs (9 respondenten).Deze kinderen hebben meestal de diagnose Aspergersyndroom en PDD-NOS.

Functioneringsniveau: gebruikelijke draagbare apparaten en intrefaces ✳ Het product moet de ontwikkeling van taalvaardigheden ondersteunen en

wanneer nodig alternatieve oplossingen bieden.Schrijven is het meest onderontwikkeld vaardigheid volgens de respondenten. 57.6%van 118 respondenten gaf aan goed te kunnen schrijven, en slechts 30.3% van derespondenten onder 12 jaar gaf aan goed te kunnen schrijven.

✳ De bediening van het product moet vergelijkbaar zijn met die van eengameconsoles en de interface vergelijkbaar met die van een internetbrowser.



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Bijna alle 118 respondenten (95.7%) gaf aan een afstandbediening te gebruiken. Het

percentage van gebruik van deze bekende draagbare apparaat is ook hoog onderkinderen van 12 jaar en jonger. Het gebruik van een MP3 speler is lager onder allerespondenten (43.2%) en in de leeftijden 12 en jonger is deze slechts 15.2%. hetgebruik van internet is hoog onder alle respondenten in het algemeen (75.4%) en48.5% van de respondenten in de leeftijden 12 jaar en jonger gebruikt het internet.84.4% van de respondenten in de leeftijden 12 jaar en jonger geeft aan computerspellen te spelen. Het is daarom veilig om te concluderen dat in het nieuw ontwerpeen associatie moet worden gezocht met andere objecten die het kind draagt.Bijvoorbeeld mobiele telefoon, agenda, elektronisch speelgoed en internetbrowsers.

Pictogrammen

✳ Het product moet de volgende symboolbibliotheken bieden: PCS (kleur en zwart/ wit), PCS animaties, foto’s en de mogelijkheid om eigen foto’s en illustraties toe tevoegen.

✳ De eerste voorkeur van respondenten voor een zelfstandig naamwoord representatie is een foto, en de tweede voorkeur is een statisch PCS symbool. Deeerste voorkeur voor een representatie voor werkwoord is een PCS animatie dieeen vaste aantal keren afspeelt, en de tweede voorkeur is een foto van de situatie.

Uit de analyse van de resultaten is het duidelijk dat gekleurde foto’s zijn deeerste voorkeur als representatie voor zelfstandig naamwoorden. 70.9% van de

respondenten kozen foto’s als eerste voorkeur voor zelfstandig naamwoord en 75.4%kozen deze als representatie voor werkwoorden wanneer vergeleken met anderestatische symbolen. 62.5% van de respondenten kozen gekleurde PCS animaties alseerste voorkeur voor het representeren van een werkwoord, wanneer vergeleken metfoto animatie (video clip) en Visitaal animatie. Wanneer een statisch PCS symboolwerd vergeleken met een PCS animatie van een werkwoord opgenomen in een lijst(als agenda), 53.8% van de respondenten kozen de PCS animatie.

Tijdens een discussie van de vragen op een online forum voor mensen met autisme,werd duidelijk dat een PCS animatie moet een vast aantal keren afspelen (loop) en danstoppen, om afleiding van de gebruiker te voorkomen. Het kan nuttig dat de gebruiker

de animatie opnieuw kan starten om hem een gevoel van controle te geven.

Spanning en oplossingenDe meerderheid van de respondenten (62.6%) geeft aan meerdere keren per daglast te hebben van spanning of paniek. De meest voorkomende oorzaken zijnonduidelijkheid, veranderingen en aanpassen in sociale situaties. De respondentennoemen geen producten als hulpmiddel om zichzelf te kalmeren maar vertonen eerdervlucht of vecht gedrag om met de spanning om te gaan.

Structuur

✳ Het product moet vooral geschikt zijn voor gebruik in verschillende binnenlocaties.47.8% van de respondenten die pictogrammen gebruikt voor dagplanning is inde leeftijden 6-12 jaar. Meer dan de helft van alle respondenten (53.7%) geeft aanoplossingen te willen voor het ondersteunen van dagstructuur. Van deze hebben demeeste de diagnose Aspergersyndroom en zijn in de leeftijden 19-30 jaar. Ongeveer20% van de doelgroep (6-12) jaar wil in de toekomst een ondersteuning gebruikenvoor dagstructuur vooral in binnenlocaties.

What’s next? A digital planner for children with autism

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