Our project for the course ends with this post. Outside the course, we will continue to gather information so that we can increase autism awareness. Although our results suggest that there is more general knowledge about the ASD than we thought and expected there is still work to do. “Universal Design and Evaluation” has served as a springboard to provide us with some basic knowledge for this task. As it is simply not possible to understand and fathom what autism is in just 10 weeks of course, we had to focus on a more concrete topic. So what were we able to do in this short period of time?
First we had to decide what to study. After considering some kinds of impairments, we concluded that autism was a good choice. After all, the course is about opening our minds: trying to understand the needs of someone who has problems understanding his/her own feelings and/or communicating in general sounded like a task that involved creativity and work. And we were willing to understand. You may read more about this stage of the project in our first post.
We suspected that autism awareness was low. To confirm (or not!) this, we conducted a survey. The results and a brief analysis of them can be found in this blog. As it was an online survey, we included questions that could be fast to answer in order to promote and increase participation. For a more qualitative study, we asked people on the street three questions related to our topic. The format of a live interview allowed us to obtain more improvised answers, as well as know that their responses were not part of a Google search. More information about these interviews is included here.
But what did we know about autism? A Swedish neurologist helped us understand what happens since one child does not reach a developmental milestone or some other aspect of his/her life that draws the attention of an adult. We explained how they are diagnosed and what happens next in this post, which also includes a brief definition of the impairment and its causes.
For our research, Arthur and Carly Fleischmann’s book was very helpful: not only does it give a personal point of view of what is like to live with autism, it also shows how the help autistic people can get to help them communicate has evolved in the last 20 years. Although we were aware that Carly’s was not the “typical” case of autism, we believe that many parts of her story apply to the children in the spectrum.
Maybe part of the aggressive movements an autistic child may do are to the frustration of not being able to communicate their needs. That hit us as a huge need, so we decided to study how to improve communication for young autistic children (as early intervention is crucial). We saw that there were already methods and tools to help children communicate, but we also thought that there is always room for improvement in this kind of field.
Children first start using the system we have already described: pictures that represent concepts (e.g car, go) have a velcro square attached in the back, so that they can be arranged in a velcro tape, showing a series of actions if needed. The pictures can be used on their own: if the child wants juice, he/she can point at the “Juice” picture. The good thing about this system is that the therapists have almost endless freedom regarding what to include as pictures, as they are easily made. However, these pictures can be easily lost and damaged.
Technology can help solve this last problem and improve the mentioned advantages as well. When the therapist believes that the kid is ready, they will move towards a high-tech solution after trying the low-tech one. There are communication devices that can be provided to families, such as the one shown here. However, as these devices are only used by these kids and have to be carried at all times, they are stigmatizing. That was why Carly asked for a computer instead, even though it was not yet as good for her needs. Nowadays tablets fulfil this in a better way, as they are more portable. And which kid doesn’t want to have one?
The apps for these devices included pictures sorted by category, “text” prediction, and are easy to use regarding motor skills: the kid (or the therapist) only needs to put a finger on the part of the screen that displays a particular picture. However, there are levels to get to a particular picture and we believe the number of steps to get there could be reduced. Some therapists suggest having words sorted by situation rather than by topic. As an example, instead of having words in the category “furniture”, they could be arranged in the category “at school” or “at home”. For us, it would be even better if each therapist could arrange the pictures as he/she desired, as each case is different and at every stage the number of words used will be changing. Also, they should be able to add their own pictures, as some children prefer seeing a customized image rather than a generic one.
Though the therapists may interact with the device in a more complex way, it is important to remember that we should design not only for their convenience but also for the children’s. As a source of motivation for this thought, here is a quote from the Fleischmann’s book:
““Why is it that they make these kids look so disabled?” she once asked me, referring to how teachers […] dressed them for the convenience of the caregivers in bibs and easy-fastening clothing.”
All these pictures take a lot of memory. As in any IT project, the ideal goal is a system that consumes the least amount of resources. Having our users, (in this case the children and their therapists), limited by resources could negatively affect the learning of the child. What would have happened if Carly’s therapists have removed the text function to have more room for pictures? We should keep in mind that we are adding new ways of communication, not substituting them.
The Swedish neurologist emphasized that it is important to give a reward to the children after they have worked with the pictures. This is done by including a picture at the end of the series so that a reward is the final element. For example, after going to the Emergency Room and having their weight, breathing, etc. checked, the last picture the child will see will be one of a cone of ice cream. Eating this ice cream is their reward for their hard work. Why not include that in the device? We propose gamifying it a little, by adding collectable stickers with rewarding messages. These messages should acknowledge the hard work. For example, “You are a hard worker!”. Also, they should come in different themes, as every kid has a taste of his/her own.
The autistic world is a man’s world. Out of every 4 autistic children, 3 are boys and only 1 is a girl. Some parents complain that this is noticeable in the aid they get. Are we taking this fact into account? For example, for a chart to share the reward stickers, we should have different kinds of themes. We can find themes based on football, others based on fairies,… We should have variety, gender-independent. And, of course, never suggest that one theme is just for one gender.
What about the voice of the device? In the video we can observe that it is an adult’s voice, not a child’s. This is highly stigmatizing and stigmatization is especially important to be avoid in children, as it could lead to bullying. Having some different kids voices to choose from should be easy to add and far less stigmatizing.
What challenges did we encounter during the project? The first one was thinking how to overcome a barrier: how could we communicate with someone who can’t communicate? And then we realized: can’t? It is not that they are not able to communicate but rather that they do not know how to. It is not that they are not able to communicate but rather, and simply, that they cannot do it in exactly the same way as “we” do. We realized, luckily in time, that our own language was already cutting out solutions and possibilities.
Autism may not come alone. It is not unusual that the child also has some level of mental retardation. This adds new challenges to their learning. Also, what happens if the child is blind too? There are possible solutions for this that sadly had to be left for future work.
These are the things we know. However, sadly there is too much we do not know yet. Carly could say, years later, that using the computer was not a very good solution because she did not like how touching the keyboard felt.
If we improve communication for autistic people, we increase the chances of them explaining their needs to us, so that our next designs cater those better. After all, design is about listening to your users.
Non-excluding Design 