Tell me about autism

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.

Lessons learned during the course: I know that I know nothing

During the last lecture, Lars shared his reflections on what the goals of this course have been. We discussed what we had learned and how we could apply this recently gained knowledge. So where do we go from here? Well, in order to know what is next, I thought I needed to think of where we came from in the first place. In other words, what I have learned throughout the course:

• When you design, there is not a very specific target group. Example: you may be designing something for blind people. Is this group homogeneous? Certainly they have something in common. But there are also lots of things that they may or may not share. Is blindness their only impairment? Does being blind mean they have the same taste for food, sports,…?
• We are different. In a wonderful way. The same way that it is natural for us to understand that we need to use a different language to communicate with a foreigner, we should also understand that, for example, the metaphors we use may not work for a blind person in the same way.
• Does the fact that a foreigner cannot speak the language prevent him/her from participating in our activities? Then why are we assuming that impaired people can do way less than what they can actually do? They may just do it differently (or exactly the same).
• We do not know what every user wants. Thus, customization is key (sometimes including safety measures).
• Impairments may be sensitive issues. It does not matter if the person was born with the impairment or got it later: this person may feel bad at certain situations when she/he is too aware of her/his disability.
• Impairments may become disabilities in some situations simply because we do not provide alternatives to perform a task. The result of this may lead to the situation of the previous point.
• Sometimes we do not provide alternatives just because we are too focused on thinking how the “poor disabled people” cannot do things exactly the same way that we do them. We tend to feel sad about this fact rather than creative to find other ways. Unconsciously, we may even think these alternatives are probably worse and not worth the effort.
• Sometimes we do not provide alternatives just because we assume everyone can go with the one option we have. Impairment awareness should be common knowledge, but sadly it is not.
• Special needs or not, we should focus on what our users can do, and not on what they cannot.
• It is very difficult to do things right all the time. Even if we struggle to find words or attitudes that we think are offensive, they may be for some (especially in one of these more delicate situations). In these cases, apologizing and acknowledging that we have only some knowledge is one way to go.
• Trying not to exclude anyone design-wise is a hard task, as it may involved high costs.  There is no easy solution for this.

And this is only the beginning. We are now aware that we should have a more open mind and think about who we may be excluding when designing. How can we avoid this? However, knowing everything about every impairment seems too big a task. Probably, one of the best ways to go is to have experts in different impairments as part of our evaluation team (are not the people with these impairments experts already?). Although that may be difficult regarding costs, at least we have a direction to walk to.

I would also like to thank everyone participating in the course for the very interesting discussions and their sharing of knowledge and opinions. I believe this exchange of thoughts was one of the best and enriching parts of the course. So thank you very much!

See you around and at the blog!

Making an ATM usable by a blind person

After watching Tommy Edison using an ATM (and how long it took him), my thoughts were mainly stuck in two ideas: he was forced to carry earphones with him and the instructions given were in some way directed to people with no visual impairments.

Although earphones are not objects too big to be carried along, one does not always have a pair in his/her pockets (especially in situations where you don’t have pockets!). Thus, using the ATM becomes something that needs to be planned at at least some level. There is little room for spontaneity.

A solution for this is to provide earphones at the ATM itself. The problem with earphones is that they go right in the ear, so having different people using the same pair does not sound like a good practice. Though probably a bit more expensive, headphones are a better solution. They could be chained to the ATM, or some other option that prevented people from stealing them. In any case, it seems reasonable to have the instructions said only for the user, to avoid bystanders hearing details that only concern the owner of that bank account.

The second thought was on what we base our metaphors. In the video they point out a location by using a clock metaphor. This is based on a visual aspect that a blind person can only learn if explained, but it really does not make that much sense (especially if we can just use a different one). A similar situation happened to a researcher developing a software that taught yoga to blind people: when the metaphor “try to touch the sky” was used, users were a bit at a loss. However, when they were told to try to reach a high self, they completely understand. This shows that, as usual, it is crucial to be able to put ourselves as designers in the shoes of the users and see what kind of instructions fit best in their everyday life.

User experience and impairments

To evaluate usability, one of the questions proposed is “is it easy to use?”. But, for some kinds of products, this maybe not be the point of the artifact. For example, in a game, in order to make the experience better, we need the task to be sufficiently challenging to be engaging. However, usability as synonym for easiness may refer to the fact that the use of the tools to perform the tasks we have chosen to solve the puzzle of the game should not be in themselves part of the challenge. In other words, there is a complex relationship between usability and stimulation depending on the goal of the product.

Estimating and measuring emotions is, in general, a hard task. But what happens in the case of autism? It gets even harder. If a person has problems understanding and expressing their feelings and emotions, it would be difficult to get to know them by observations or interviews. How does this affect the design of user experience? On the other hand, if we consider autistic people no different from other people except from this fact of feelings communication and understanding, then do we need to design differently to include them? Maybe the answer is that it is more difficult to have them as testers, as the feedback is harder to get from them; but, if we select a varied sample of testers, they should represent a wider range of users. Including those with autism.

What about other kinds of impairments? If we are designing a game, should we include in testers for our evaluation that have sight, hearing, cognitive or other impairments? A simpler case may be movies. At high school I remember just assuming that blind people had no interest in films, as they were missing out most of the experience. However, there was a girl whose mother was blind and they had a great times watching a movie together: the daughter would tell the mother what was happening that couldn’t be deduced from the sound and they both enjoyed those two hours. The experience was different for each of them, but that was it. So maybe including this mother in the team to give feedback is a good idea: who better than her to say if the voices were expressing the characters’ feelings well enough?

I want to grow old in here

Feeling old could be defined as realizing that we are not able to do what we were able to do before, in the same way. We may realize this physically (e.g. joint problems when running) or socially (e.g. problems understanding younger people’s slang). For the latter, and taking the case of teenagers, it is even important to have this distinction, as they need this difference to find their identity. Thus, in this post I will be focusing only on how someone grows old physically and how an apartment may be designed to support this.

Designing for the elderly is designing for a very heterogeneous group of people. Some like to cook, to have their house clean. Others don’t care that much and have more interest in keeping in shape and being outdoors. Some are very family-oriented and want to keep a highly active social life. In fact, all of us will hopefully grow old, so designing for the elderly is, in the end, designing for everyone. Thus, multiple needs should be covered and multiple options should be available. But none of these should be forced, while simplicity of use should be kept at all times.

Some other considerations to take into account when we design to cover needs related to impairments are those related to the people affected indirectly by them. If we put a loud beep as an indicator, would that be upsetting for bystanders? Even more importantly, how do our solutions affect the people that spend long and quality time with the person impaired? When exploring the needs, we should cater our solutions to also meet the needs of family, therapists, etc. as far as they are concerned with our user.

Text as indicator for interaction should try to be avoid, as well as acronyms. This is because, especially in the case of the latter, understanding involves memory skills. The more complicated the instructions are, the more probable is that a person developing memory loss will have problems recalling how to use the artifact. If possible, pictures are usually preferable. The best option may be to have both text and picture, for memory training and also to accommodate different kinds of users. Allowing users to customize these pictures can be a better solution. Maybe one picture triggers one memory till one point, where another picture will do the trick faster or better. Or maybe we just get tired of one and like to change from time to time. Feeling in a wintery mood? Make your apartment look more Christmasy!

The customization of the apartment may be performed by the one living there or by close people (again, family, therapists, etc.). The addition of profiles to the system would allow to select a set of possible actions and changes for different users of the system. One issue I have not been able to solve in a satisfactory way is what should be included in each set. At the wheelchair trial session, we saw that we overworry about safety sometimes and users may want to have less safety precautions. My concern in the case of cognitive impairments is that the person is suddenly not able anymore to clearly discern which he/she is able to do and which she/he is not. In this case, another user should have more permissions in the system to include safety options (rejected by the person with the impairment). Is this ethical? How do we know what is best for another person? Where is the line drawn? I am afraid I have not a good answer for these questions.

Several ways to have notes on things that need to be remembered should be spread across the apartment: a screen on fridge door, to immediately write down what needs to be bought. With a touchable interface, so only pointing with one finger is needed (in case of lost of fine motor skills). Something similar to have reminders for medicines, in a calendar for family birthdays, doctor appointments, etc. Other data should be possible to add, e.g. for a doctor appointment what do I need to bring, (maybe X-ray results?), who is coming with me, how do I get there? Can I check if that person is free to give me a lift? Having everything in one place will more likely prevent me from forgetting to take care of all the details. As to delay potential dementia, gamification of house chores, etc. could help to keep memory active and motivate the user to do it.

Memory loss will make a person more prone to forgetting to turn off the kitchen stove, for example. Smoke detectors are something we have in every house. But what if this person has also a hearing impairment? A nontraditional solution could be to have the floor slightly vibrate, so that anyone anywhere in the house can perceive it. Anywhere? And if you are sleeping, how can we wake you up? Having the bed vibrating? What happens if you are in the shower? I have yet no answer for this either.

Anything that needs to be pushed in the house should not involve being strong. Aids for the soap, as seen in some clinics (like in the one in the picture) are an inspiration for this. Maybe we could use a similar idea for doors? Some doors may need to be heavy (do they?), due to fire prevention, but that doesn’t mean we need to do all the effort to push them. What about using the same sensor/button combination to open doors at campus? Sometimes we may see this button as for “lazy” people but… is using the knob and pulling such a workout? Should it be?

Another need I have noticed in the early and, I would say, in anyone, is the need of having warm floors in winter. Heated floors should be part of the ideal apartment. As with any other feature of the apartment,  customization is key (only I know how hot I want the floor) and it would be even better if it included recommendations (“the optimal temperature, with your medical history, is 25 ºC”).

These recommendations can be based on the data collected by monitoring the vital constants of the user. In Madrid (and probably in lots of other places) there is a social service, which consists of sending assistance when the user presses a button contained in a medallion that can be easily carried in a chain around the neck. This medallion could read vital constants and sends them to nurse when button is pressed, so that more information about the problem is known as soon as possible. The medallion could also beep if constants reach a dangerous level (low blood pressure, insulin levels, etc.)

As mentioned at the beginning of the post, there are lots of people who  like to keep their house dust-clean. The appearance of visual impairments may decrease the ability of finding dusty spots. To aid in this, dust sensors can be included and “dusty” zones may be shown in a small map of the apartment.

Some other improvements may be made for the social needs. For instance, having slide shows photo frames, maybe one for each family member, so that pictures of beloved ones are displayed around the house. What about adding videos? Sound can be turn on/off, and it is important to remember that, for some people, these kinds of sounds keep them company.

Looking more able or disabled: body posture in a wheelchair

We had the great chance of trying a manual, an electrical and a “4×4” wheelchair. The manual was the easiest to control indoors; the electrical was smoother than the manual outdoors; the 4×4 was good for “wild” terrain but maybe too big and powerful for a walk around campus. Each type of chair is aimed for a different kind of use.

However, they should have not been different regarding the impression one gets when we see someone using a wheelchair. In all cases, that person shouldn’t look disabled. I emphasize that: not with a disability (for specific situations), but disabled (as if with no capacity to do anything). I wondered what made the difference between the two first kinds, which gave this impression, and the 4×4, which not only didn’t make the user look bad but also even improved his/her image.

My conclusion is the posture adopted by the legs. When riding the 4×4, the posture is as one of a rider: one who has “tamed a beast” and thus deserves only credit. Legs spread out, as with confidence. And when we see someone sure of him/herself, we assume there are good reasons for that feeling and thus we tend to admire that person. On the other hand, the other chairs almost force the users to put their legs with the tips of their feet turned towards each other, as in weakness. As if they were trying to go back to fetal position, a sensation that increases when a user has to lean forward to keep balance. And we know the immediate association in our minds to this posture: someone fragile, in need of assistance and a tap on the back.

Although there is much to improve in the design of wheelchairs (looks, for starters), I believe that the posture of the legs should be or of the lower body should be improved as far as looks are concerned.

How to design: finding needs

For universal design, the first steps of the process focus on getting rid of preconceptions and finding the real needs of the user. These needs may be studied by different means, such as observations and interviews.

However, these means have to be used with a different care than in other design processes. Whereas in the latter the usual may be that the user is comfortable with showing and explaining in detail why he/she cannot do some tasks, this may not be the case for the former.

A person in a situation where he/she feels disabled may be sensitive about it and try to hide these difficulties. Addressing these problems directly to them may lead to unpleasant feelings of helplessness and embarrassment. These feelings are probably more likely in people who were not born with the disabilities and have yet to assume the limitations imposed by the impairment. This lack of acceptance may be also noticeable in parents and other family, even of those who are born with an impairment: if the people around the person with the impairment are not aware of what involves to live with these different limitations (they need to get used to do things in a different way), they may be the ones who need time to accept the disability. They may not have the impairment but feel affected by it indirectly.

I believe it is crucial for this search of needs that the designer has an open mind and knows how to address every kind of situation he/she may encounter during the process. Sadly, preconceptions (misconceptions!), lack of the right vocabulary and other issues lead us to the need of training designers (should we naturally know how to deal with people, regardless of impairments or not?) before observations, interviews or any of these means can be used in an ethical way.

Grouping as a tool for thinking, not as a universal truth

I once heard a psychologist said “Adolescence would be considered a syndrome… if it wasn’t for the fact that everyone goes through it”. Teenagers may act, for an “outsider” point of view, in weird and unexplainable ways. That they are in the same age range does not mean that they are the same. However, it does mean that most of them have received a relatively similar education, have lived almost the same important events (e.g. 9/11 at USA), have a similar lifestyle (e.g. obliged to go to high school) and so on. They have also probably similar physical skills: though there are always cases of teenagers with knee problems, for instance, every Physical Education teacher has access to the approximate distance a teenager with a concrete age and gender should be able to jump.

If we talk about design for teenagers, what we probably are thinking of is designing for a situation that mostly teenagers, rather than other age group, live. For this design, as with any other group we may come up with, we would study the characteristics that may apply for a high number of teenagers. As we should be aiming for an inclusive design, we should not forget that there are teenagers who do not fit this standard we have used.

I think something similar happens if we talk about design for the elderly. A range of age does mean that some characteristics may be found in individuals in this group. But a group is never homogeneous: all individuals, it does not matter in which category we include them, will be always different to each other in some way.

We need groups to help us design. The risk is to think these categories we make are universal and include everyone. We should also think of how many groups we are considering. If we are designing a cane and focus on having good esthetics, are the looks somehow customizable so that not only elderly people but also teenagers, and all the other group ranges could say “this design fits me”? Or did we only think about the elderly that need assistance to walk? Did we consider that there are subgroups in the “elderly” group we made?

Evaluation: who are your testers?

At the lecture about Principles and Practices, two videos that we watched made me reflect on how we think about the evaluation of products. These two videos were about how to a blind person uses an ATM machine and about an “ideal” app to scan money, so that a blind person could know the value of each bill regardless of the problem of them being all the same size.

In these two products (the ATM and the app), it was clear to see that they had thought about blind people and had considered visual impairments in the design. What it is also obvious is that they didn’t perform tests with actual blind people. If they had, they would have seen that some actions were difficult to perform (plugging the headphones) or even unthinkable for someone who does not see (getting good lighting conditions).

They may have not found any volunteer for the testing. There are a lot of different impairments, so it is difficult to have a tester for each of them. In that case, we need to try to recreate it ourselves (e.g. using rollerskates to test if a wheelchair would do good, as suggested at the beginning of the course). The challenge, in my opinion, is to find evaluation experts that are aware of the variety of impairments. If these experts follow the proposed heuristics, is that enough? How do we understand “simple use”? Simple for whom? The variety of impairments forces the language to not be very concrete, which in turn makes the interpretation very subjective.

Diving in autism

After going through the content discussed in the lectures, we met to start a brainstorming session about different impairments and potential needs of the people affected by them. It is important to highlight the word “potential”: as we hadn’t had the opportunity yet to know in more depth how having one of these disabilities is experienced on an everyday basis, we could not be sure of what are real needs and what the unreal ones that our outer perspective may create.

Our first decision was to focus on cognitive impairments, as this field interests us to a great extent. During the course, we have reflected on how it would be like to be blind, or to sit on a wheelchair. However, it is far more difficult to relate to cognitive impairments: whereas we may clearly feel in one way or another a physical barrier, one in our mind can only be imagined..

In  order to decide which topic to choose, we had several brainstorming sessions to talk about mental retardation, autism, ADHD, Parkinson and OCD. Of this list, we decided to focus on autism, a disorder more common than what we may think: it affects 1 in 88 people in the United States, according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.

Arthur Fleischmann, father of Carly Fleischmann, says in his book: “I could not enter her [Carly’s] world, whatever world it was, and fruitlessly called her into mine.” This clearly expresses why we believe that research in autism is both meaningful and challenging. There is obviously a vital need of understanding and change: instead of dragging autistic people from “their” world to “our” world, we need to look for ways to make this world “ours”, of all.

Autism may be the cognitive impairment that most people are less aware of. We will confirm this hypothesis by carrying out a survey to get qualitative and quantitative analysis on the general knowledge about autism in our society. Conscious of our own lack of information, we are also looking for documentation and means to engage in conversation with people with this impairment. This will be done in the range marked by ethics, as seen in the lectures: instead of contacting random individuals with the impairment, we will look for institutions and associations that work with them and may be willing to let some volunteers know about our request.

In the mean time, we are currently working on the documentation, so that our understanding of autism would get more profound to prepare us for the next steps in the research: talking directly with those affected by it. This will allow us to look, with them, for their real needs. As a starting point, we have identified three main divisions for these: communication issues, fear of the new, and filtering of input. Our current and future study will direct us in a more concrete search for a particular need.

Project members: Faris Halteh and Virginia Grande