# The Puzzling Life of Autistic Toddlers: Design Guidelines from the LINKX Project

Authors: Helma van Rijn; Pieter Jan Stappers
Journal: Advances in Human-Computer Interaction
 (2008)

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## Abstract

This paper presents guidelines for designers to help them consider what children with autism value in
interactions with their environment. The guidelines were developed during the LINKX project in order
to design a language learning toy for these children and are based on literature study, expert interviews,
generative techniques, and prototype testing with users. We present both the theoretical or practical
background of each guideline together with a discussion how the guideline was evident in the
prototype of LINKX. Testing the prototype in the real world helped us to shape the prototype and the
guidelines. This paper aims to share our guidelines with the design research community, so that others
can use them as steppingstones in their work.


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## Body

## 1. Introduction

Interactive toys are opening up new learning and play opportunities for
children with autism. For example, the toys can keep track
of the child’s progress, evolve
with a child, or give controlled feedback. But for this to succeed,
the design of these toys must fit well within the experiential world of these
children. Children with autism live in an experiential world that is different
from that of other children or adults. Therefore, designers need to make effort
in to understand these children’s needs and preferences.Although an admirable body of theory on autism is available in popular
science (see, e.g., [1, 2]), much of it is not helpful for designers. Moreover, absorbing
literature is often
too time-consuming for design teams. We see two important ingredients that do
work for designers: contact with the children
to achieve empathic
understanding, and guidelines on an operational level to help them translate
that understanding into product ideas and concepts.In the LINKX project, we developed
guidelines ourselves in order to design a language-learning toy
for children with autism. These guidelines,
implemented in the design, were acquired through study and
contextual research, such as
expert interviews, generative techniques, and prototype testing with users. The prototype and the research techniques have been described
[3–5]. In this paper, we want to share
our guidelines with the design research community, so that others can use them
as stepping-stones in their work.


## 2. Background of Autism

Autism is an inborn developmental disorder that affects
around 91 people in every 10 000. Much variation exists between autistic
children, and even with one child the diagnosis can change over time. Affected
children may display a range of disabilities at many levels, such as impairment
in social relationships, communication, and imagination [6]. Therefore, it is best to use the term
“autism spectrum disorder” (ASD),
although we use the term “children with autism” in this paper. The disorder distinguishes
a number of classes, including pervasive developmental disorder-not otherwise specified (PDD-NOS), Aspergers Syndrome
(sometimes referred to as “high-functioning autism”), and classic autism.


## 2.1. Puzzling Your Perceptions Together

The neurological setup of the autistic brain makes children
with autism process information differently from children with typical
development. Thus, children with autism experience sensations differently and
also have difficulties with understanding these sensations.Unlike most
people, children with autism perceive sensations, such as sound, smell, and
pain, as incoherent fragments. They do not automatically integrate different
sensations into a meaningful whole as most people do. Therefore, they can be very sensitive to certain
sensations, and insensitive to others. For example, a child can feel distress because of
sticky materials, while it does not notice pain at all.These children also struggle with sensemaking.
Temple Grandin, an adult with autism who could not speak as a child, describes in her book her
difficulty to come up with new categories [7]. When she was little, she used to categorize cats and dogs by their size. After her neighbours got a small
dog, she had to come up with a new
feature to make the distinction, which became the nose. Children with autism need to consciously make categories for everything
they hear, see, smell,
or feel. Each time something needs to be processed, the child has, in the words
of de Bruin [8], to “puzzle it together.” The time needed for this puzzle can vary from seconds
to months. For example, one mother tried to teach her child to say the word
“cookie.” After trying it for weeks, she finally gave up. Surprisingly, the
child said the word himself a month later. Apparently, it took the child that
long to incorporate the word. This process of puzzling your perceptions
together is visualized in Figure 1. For children with autism, it is important to eventually
complete these puzzles in order to get some peace of mind.Figure 1
Children with autism need to puzzle their
perceptions together to create order. Before puzzling, the child feels
distress. After puzzling, the order makes the child feel at ease.This
overall explanation about how children with autism process information is
important for understanding the behaviour, needs,
and feelings of these children. Most research on autism has brought forward
classifications [9, 10],
biological facts, or theories [11, 12]. Although this is valuable, it does not
sufficiently inform and inspire designers. Designers mainly need to know and
understand the behaviour and feelings of the children when they interact with
“things” around them, such as toys and people. We deliberately categorised
people as “things,” because that is how many children with autism regard them.
They have difficulty in relating to people. Most of us, including designers,
have difficulty in imagining what this must be like, because we are used to conceive
our environment in largely social terms.


## 2.2. The Three Boys Involved in the LINKX Project: Beer, Robbert, and Jakob

Three parents chose to cooperate in the LINKX project in
response to a letter in which we asked for their expertise. The parents and
their children (see Figure2) were involved throughout the whole design
process. These boys helped us to gain a general view on autism, because they
differed in diagnosis, age, and language level. Although one child was easier
to make contact with than the others, all of them could be triggered to try
something new. From
the children and their caregivers,
we learned how creating order is a central activity in their lives. This is
their only way to deal with the world, because of their difficulty processing
information. The children will serve as examples for many of the guidelines.Figure 2
A short introduction to the
three children in the LINKX project.


## 3. A Toy Designed for Autistic Children: Learning Words with LINKX

Before going into depth about guidelines on how to design
for autistic children, we first introduce the concept design LINKX, depicted in
Figure3 [3]. LINKX was designed as an interactive toy to help children learn
their first 100 words, such as “door,” “table,” and “cabinet.” The toy consists
of speech-o-grams and interactive blocks. Before play starts, a caregiver
prepares the toy by speaking words into the speech-o-grams. For example, a
parent records the word “cabinet” in a speech-o-gram and attaches it to the
cabinet. Next, children can start to play by linking blocks to
speech-o-grams or to other blocks. Each time a block connects, it changes its
lights and speaks the word. For example, when a child links a block with the
speech-o-gram described above, the word “cabinet” moves into this block. When
ready, this block plays the word “cabinet.” Each speech-o-gram has its own
colour, which travels with the word, to help children to predict the result of
making a new link. In this way, children can explore names of objects in their
everyday environment by playful interaction. The LINKX project website contains
a movie that shows the concept in use by the three involved children [5].Figure 3
A presentation of
LINKX, the concept design based on guidelines discussed in this paper. By
playing with blocks, children cause the blocks to play the word they received
from objects in their everyday environment. For example by connecting a block
to the speech-o-gram attached to the cabinet, the block says “cabinet.”LINKX employed the guidelines, which are described in detail in the next section
as follows. First, the fixed location of the speech-o-gramsstructured the child’s environment.
Explicit structure is important for children with autism. The sensorial quality of feedback such as
the lights changing their position in the blocks and colour was fascinating for
them. This is not only because the children enjoy sensory stimuli such as sound
and light so much, but also they enjoy the
predictability of when these stimuli appear each time after they made a
link. For that reason,
they liked to link the play elements together again and again. The blocks confirmed over and over that the child was in control. The children
showed they had an excellent memory for
sensory detail, because days after playing with the prototype, they still
remembered the speech-o-gram’s colours. Also during their play, the children
remembered what word was inside a block with the help of the colour.


## 4. Guidelines on How to Design for Children with Autism

The attention to designing for children with autism is
rather new. Earlier efforts have focused on the disorder itself, with an
emphasis on curing a disease rather than improving the way the children can
function with such an impairment. Approximately thirty-five years ago,
researchers and designers started to realize the importance of using technology
for their treatments (see, e.g., [13, 14]). Moreover, scientists and practitioners
realize it cannot be cured at present. This indicates a need for guidelines on
operational level to come to products for these children.Figure4 depicts an overview of our
guidelines as an open-ended jigsaw puzzle, inviting others to think along and
help to complete it.Figure 4
An overview of the design guidelines on how to
design for children with autism. This puzzle is unfinished on purpose, to
indicate that we expect more insights will follow in the coming years, and want
to invite others to think along and help to extend it.In this section, we will explain each
guideline, or puzzle piece, by giving theoretical background and examples from practise combined
with how we implemented this in LINKX, the interactive toy we presented earlier.
The concept of LINKX was designed on the basis
of the guidelines. By means of building the prototype and testing it with the
children we could evaluate our guidelines. Therefore, we present the
guideline combined with LINKX examples. To illustrate this, the following figures
show for each guideline a pair of puzzle pieces, in which the left piece was
taken from Figure4, the right piece from the design of LINKX.


## 4.1. Give Them a Feeling of Being in Control

Children with autism often have no idea how to make sense of
their surroundings. Their way of processing information makes them feel they
have little or no control over the situation. For that reason, the children enjoy
interactions that make them feel in control. In the literature, this preference of children
with autism is described in several cases (see, e.g., [10, 15]). Beer illustrates this
preference with his alphabet toy computer. For example, he likes to press the
letter “B” and hear it say “bee” over and over. On
other days, he
prefers the letter “A” or “C.” He adores the lights and sounds that are
triggered at his command. The same goes for his little number computer, which
is depicted in Figure 5. This example shows how a product makes him feel in
control by means of direct feedback, given at the position of the trigger and
immediately afterwards. In that way, children can predict the effects of their
actions. By triggering action over and over, the children reassure themselves
that they are in control of the toy.Figure 5
A sense of control.  (a) Beer playing with his little number
computer: by pushing the button he makes it count from one to ten. (b) Beer playing with LINKX:
by linking a block to the speech-o-gram he makes it say the word “fishbowl.”In
LINKX, the children felt in control when
linking blocks. As a result of
each link, a word and its associated colour travel from one block to the other.
Direct feedback was given by light and sound. The little smile on their faces
showed they were happy when the blocks turned on their lights and played a
sound at their command. Beer and Robbert even broke out in laughter. The blocks
clearly made them feel good about themselves. The importance of giving them the
feeling of being in control became clear on the occasional moments the
prototype gave a delayed or wrong reaction. For example at one time, the colours of two speech-o-grams interchanged. A red
speech-o-gram attached to the kitchen cabinet became green, while the green one
on the bucket became red. Jakob immediately sensed this loss of control and
started to cry in distress. He refused to play again with the toy during that
session. This example shows the importance of consistent and predictable
product behaviour for these children.


## 4.2. Provide a Structured Situation

Children with autism have difficulty changing from one
activity into another [16]. Their way of processing information makes it
difficult for them to know the order of activities or what will happen in what
situation. Activity schedules have proven to be successful (see, e.g., [17, 18]).
Visual prompts, such as the day-planner depicted in Figure 6, stay visible at
all times. The day-planner provides a structure, because the child is informed
about the activities in time. When an activity is completed, the corresponding
pictogram is flipped over, indicating it is time for the next activity. This
structure helps them to both learn actions such as the sequence for going to
the toilet, as well as providing a safe and structured environment in which a
child can learn.Figure 6
Structure: (a) a day-planner
at a school for autistic children; activities are planned in time by means of
pictograms. When an activity is completed, the pictogram is flipped over in
order to provide structure. (b) An illustration of LINKX in a living room; the
game is structured by means of speech-o-grams that have a fixed position, word,
and colour.In LINKX,
a structured situation is provided by means of the speech-o-grams (see Figure6). These speech-o-grams are labels on which a parent can leave a visual prompt
(e.g., pictogram or written word) and an audio prompt (spoken word). Both the
presence of speech-o-grams on objects and the predictable result from each link
structure the play situation. The fixed location, fixed content, and fixed
colour of speech-o-grams give the children peace of mind. However, to challenge
children to learn new words, parents can change the position, content, and
colour of one or more speech-o-gram(s), whenever the child is ready for it.


## 4.3. Let Them Create a Structure Themselves

Not only do the children enjoy a structured situation, they
enjoy creating a structured situation themselves as well. They like to play
with toys they can organize, such as the game “memory” or jigsaw puzzles, and
especially love to complete those games. A missing piece can cause panic. The
children enjoy looking for similarities and differences as well. The children
create structure by making differences explicit. Another thing they like to do
is arranging objects in space. For example, Beer loves to arrange objects, such
as apples in a sequence (see Figure7),
and looks for differences and similarities in that as well.Figure 7
Organising: (a) Beer loves to
make sequences of objects; here you see Beer making a sequence with apples. (b)
Robbert playing with LINKX; he loves to make blocks into the same colour and
arrange them in groups.In LINKX,
we tapped into their preference to create structure, because the blocks and
speech-o-grams can be seen as a three-dimensional puzzle. By connecting the
blocks to the speech-o-grams, the corresponding word travels from that
speech-o-gram into the block. Moreover, the blocks can be organised nicely into
a line or a group of blocks varying in colour. Robbert for example liked to
make collections of blocks in one colour. Over and over, he made them all
green, then blue, and red, and put them nicely together (see Figure7). Beer on
the other hand, preferred to reserve one block for the colour red, and another
one for green. His structure lay in appointing one colour to one specific
block.


## 4.4. Make Use of Their Special Interests

Some children develop special interests to create structure.
Focusing on specific aspects of perception helps the children to make sense of
the things they see, feel,
and hear. For example, Jakob has special interest in colours, Robbert in sound
(music in particular), and Beer in numbers (see Figure8).
These elements are everywhere and the
children experience them as important regularities in daily life. These special
interests can serve as a means to elicit them to interact with something and
learn.Figure 8
Special interests: (a) Beer's
special interest is numbers. They are everywhere and provide him a safe
feeling. (b) Jakob’s special interest in colours encourages him to play with LINKX,
although it hinders him from learning words.As expected, Robbert paid a lot of attention to the sounds
(or words) the blocks produced. Although LINKX’ colours elicited Jakob to play,
it distracted him from learning. He was so focused on all the beautiful colours
that he could not pay attention to the words LINKX aimed to teach him. His
parents suggested it would be best for Jakob to use only one colour for all
speech-o-grams, such as white. In that way,
he could focus better on the sound. So, special interests can both help and
hinder children in their play.


## 4.5. Facilitate Their Excellent Memory

Children with autism have a much better (visual) memory than
children with typical development. An example that illustrates their excellent
memory is the fact that Beer can arrange the alphabet from “Z” to “A” in a few
seconds (see Figure9). We have to “think backwards” but he just “sees” it. If our designs make use
of their memory skills, we may help them understand more and learn better.Figure 9
An excellent memory: (a) Beer
playing with his alphabet letters on the floor; he knows its sequence by heart,
so he can lay the alphabet from “A” to “Z” and from “Z” to “A.” (b) Beer plays
with LINKX; he remembered the green lights belong to “fishbowl” and the red
ones to “window.”We could explore what Robbert remembered, because he speaks
in small sentences and gives answers to questions. For the other two children
in the LINKX project, this was impossible. After Robbert played with LINKX the
second time, we removed the speech-o-grams and the blocks and put it away. Next,
his father asked him whether he knew the colours of the speech-o-grams, which
were attached to different objects, such as a cat litter box, kitchen door,
carpet, and bike. Surprisingly,
Robbert not only knew the colours of objects he had just played with, but he
also knew the colours belonging to objects from the week before. For example,
when his father asked, “what colour
belongs to the bike?,” Robbert answered, “the bike is red!.” However, he not only remembered
all of the colours, we discovered he could also name the gender of the voice
that spoke each word. Both his mother and father had recorded words in LINKX.
Although he did not recognize his parents from their voices, he did remember
the gender of the person that had spoken the word. When asked, “who is the
bike,” he answered, “the bike is a mister.”


## 4.6. Reward Them with Sensory Experiences

Children with autism often enjoy specific sensations. For
example, Robbert is sensitive to sounds. The low pitch of a truck that drives
through his street distresses him. However,
he loves to put a little vibrating toy, which is meant to be looked at, against
his ear to hear a low-pitched sound. Jakob’s mother said, “stimuli are less
disturbing when they are expected. It helps a lot when the child is in control
over the stimuli.” Although these children can be highly sensitive, or insensitive,
to stimuli, they truly enjoy sensory rewards, such as sounds, music, and
vibration, and deep pressure, as described by Grandin [7]. Figure 10 shows how
Beer enjoys the deep pressure of a big ball being pushed onto his whole body.Figure 10
Sensory experiences: (a) Beer
gets rewarded with deep pressure during speech therapy. The speech therapist
rolls the ball roughly over his body. This makes him feel relaxed and happy. (b)
Beer playing with LINKX; he
likes to look at the coloured lights from very close and laughs out loud.The occasions when the prototype malfunctioned clearly
exposed the children’s sensory preferences and attention. For Robbert, LINKX’
sounds were very important. When he linked a block to a speech-o-gram on the
cat’s litter box, the block’s lights turned red, but the sound was not produced.
After a moment, Robbert instructed the block to “say litter box.” For Jakob,
LINKX’ colours were very important. Each time a block changed its colour, Jakob
enthusiastically pronounced the colour “red,” “green,” or “blue.” He did not mind
the two times that the sound failed. Although it seems that Jakob did not learn
anything from playing with LINKX, since he focused on the colours, we are not
sure. For a long time,
it seemed Beer focused only on the lights as well, but later on, he surprised
us, when we unexpectedly heard him mutter the word “fishbowl” as he walked towards
the fishbowl. Maybe this could be the case for Jakob as well. Some children
need more time to puzzle than others.


## 4.7. Facilitate Their Eye for Detail

Part of the children’s excellent memory is their great eye
for detail. When something changes, even a tiny detail, an autistic child will often notice immediately, while our blunt
senses overlook it completely. For example, Robbert has a detailed view of
books, CDs, and DVDs. When his father adds a new DVD to the row of DVDs, he
notices immediately, only by looking at the sides of the covers. Also Beer
likes to investigate things in detail (see Figure11). He notices the smallest details
around him.Figure 11
Eye for detail: (a)
Beer investigates pieces of paper on the table. (b) Robbert counts five red
lights on top of the blocks instead of the number of red blocks on the floor.While
playing with the prototype of LINKX, Robbert’s eye for detail was again clear
when his mom asked him how many “red’s” there were. Robbert immediately said,
“five.” His mom answered, “no, I see one, two, three blocks.” Now Robbert
counted, “one, two, three, four, five,” pointing at the red lights shining on
one block instead of counting the three red blocks lying on the floor. Jakob also
counted the lights on top of the blocks out loud.


## 4.8. Let Them Use Their Whole Body

Children
with autism explore the world, just as other children, through play. By letting
the children use their whole body, the learning activity becomes a multisensory
unity of action, perception, cognition, and emotions. Hengeveld etal. [7]
list more advantages to tangible interaction for children with multiple
disabilities, such as more room for social interaction, a more personal
interaction style, a slower pace, and a more active interaction. This
multisensory unity is visualised in Figure 12 with a picture of Beer during his
dolphin therapy in Florida. During the activity itself, he learned how to
interact with the dolphin and got rewarded by the sensory experience of the
warm water, involving action, perception, cognition, and emotions.Figure 12
Whole body: (a) Beer swims
with a dolphin in Florida. (b) Jakob plays with LINKX on the kitchen floor
together with his sister.LINKX
provided a break from conventional computer-assisted language learning, which is
mainly screen-based with words linked to drawn pictures of generic objects.
LINKX shows how interactive toys can bring word learning to the real familiar
environment of the child, involving the whole body, multiple senses, and motor
actions. When Jakob played with LINKX, his sister naturally joined his play,
because there were more blocks available. On the kitchen floor, she showed him there were more speech-o-grams around
him, providing other important learning aspects, such as imitation and
turn-taking.


## 5. Conclusions

These
guidelines were developed on the basis of literature, our own and other
people’s experience and the development of the LINKX prototype in particular.
Especially the real world helped us to shape the prototype and the guidelines.
For example, the prototype tests showed us the importance of giving the
opportunity to adjust the toy to a child’s specific preferences or needs. The
aim of this paper is to share these guidelines with the design research
community, so that others can use them as stepping-stones in their work leading
to more tangible toys for children with autism. We encourage others to use and improve
our guidelines, and formulate new ones.The
interest of parents, pedagogues, and psychologists in LINKX shows the value of
these guidelines, both to drive design and to open up discussion. This specific
example shows how computers can help children to learn in other ways than in
front of a computer screen, as is done in the CD-ROM language training games
that work so well for children with typical development. By embedding computer
intelligence into physical toys, several aspects can help the children enjoy
their play in a predictable way. First, cause and effect are immediate at the
place of action. Second, the toy refers to real objects in their physical
familiar environment instead of (symbolic) representations in a generic drawing
of an environment. Third, play takes place in a safe environment, their homes,
involving their bodily actions and social interactions. These aspects help the
children to learn in a way that makes sense to them and should be exploited
more in interaction design for these children.We
hope this paper provides some insight into the experiential world of autistic
children. In the long term, further research can give more certainty about the
causes of autism, and how learning and play can be facilitated for these
children. We learned that personal contact with the children was important for
understanding and empathy. We hope the guidelines can provide a bridge between
the theories and design research community. Moreover, we hope to inspire more
designers with this story of Beer, Robbert, and Jakob, who often surprised us
with their smart and inventive ways of dealing with the world.



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