Audet - Detecting Autism in Pakistan
The project aims to enable and educate teachers and parents of potentially autistic children to help detect autism at an early stage.
Team
Supervised by Dr. Suleman Shahid (LUMS), Amnah Khan (Research), Me (Research, Design, & Development)
What is Autism?
Autism is a complex neuro-developmental disorder that affects a child’s communication, cognition and social interaction. These disorders present themselves as difficulties in social interaction, verbal and nonverbal communication, cognition and repetitive behaviour. The symptoms are observable during initial years of child and are usually characterized by developmental delay is speech and motor movement. It is believed to be one of the fastest growing disabilities among children world-wide.
More than 350,000 children in Pakistan suffer from Autism
Introduction
The major problem in autism screening and diagnosis is a lack of awareness among parents and teachers. Moreover, late detection of the disorder makes intervention and therapies less effective. Our main aim in this project is to provide a mobile and web platform for parents, teachers and healthcare professionals to assist them in autism screening in 3-5 years old children.
Challenges
01 Lack of Awareness
In Pakistan, as psychiatric services are still in its infancy, very little work is done for diagnosis and treatment of autism. Due to social stigma associated with psychological disorders and low literacy rate, many people have no idea about what is autism and how it is distinguished from other neurological and psychological disorders.
02 Late Detection
Due to lack of awareness in parents and teachers of potentially autistic children, signs and symptoms are often ignored. The symptoms are often reported late to professionals which causes psychological interventions to be less effective.
03 Misdiagnosis
The absence of formal referral paths to psychiatric centres for children often leads to autism misdiagnosis. Diagnosis for autism is usually done in multiple settings and is provided by variety of health care professionals.
04 Social Stigma
An autistic child, in a conservative society like Pakistan, is said to be mentally disabled which leads parents towards isolation. Parents often tend to get into a state of denial and therefore, they avoid going to the psychologist for a regular diagnosis checkups which can having devastating impact on the child’s future because every autistic child has potential for improvement.
Study Methodology
1. Literature Review
Identifying current tools and methods for diagnosis and Screening
2. Designing Activities
Designing contextually relevant activities for children in Pakistan targeting multiple development domains
3. Expert Opinion
Validating designed activities from clinical psychiatrists.
4. User Testing
Testing activities with autistic and typically developing children.
5. Validating Results
Validating Results and insights with medical professionals.
6. Activities Redesign
Redesigning activities based on results and insights.
The Solution
Our main idea is to design a mobile platform for parents, teachers and health care professionals, that can be used to spread awareness about Autism and eventually assist in Autism Screening. The platform aims to be in-line with the cultural topography of the country by redesigning tools to fit cultural context and supporting Urdu in the application.
System Diagram
Initial Design for Activities
1. Sally Anne Test
This activity is based on the famous test to access the First Order False Belief developed by Baron Cohen in his works. Typically developing children at the age of 5 start developing first order false belief. In this activity, a scenario is given to the child. In the scenario, two friends Sally and Anne are in a room. Anne gives a red ball to Sally as a gift. Sally puts the red ball in her basket and leaves the room. Anne, now alone in the room transfers the ball from Sally’s basket into her box and leaves the room. Later Sally returns in the room. After describing the scenario, the examiner will ask the child the following questions:
1. Where does Sally think her ball is?
2. Where will Sally look for her ball?
3. Where is the ball?
2. Identify the missing animal
This activity is also based on the theory of Executive Dysfunction. It assesses the working memory of the child i.e. how well the child can hold two pieces of information simultaneously in mind. In the start of the activity, a page with a house outline is shown along with an animal and a colored object such as sun or a tree. The examiner must make sure that the child knows the animal and the object. In the next page, only the house’s outline appears. The child has to identify the animal that was shown in the previous page and is missing from the current page. The idea behind this activity, is to evaluate a child’s ability to hold two pieces of information together i.e. animal and colored object. It also checks whether the presence of a colored object diverts the attention of a child or not.
3. Match the Object
In this activity, the child is required to match the object with other two objects displayed on the page. Two sets of objects of matching images were presented to the children. First, we present two objects to the children and ensure that they know both the objects. We then display a third object and ask them to identify the object that matches with the third object in terms of ‘shape’, ‘size’ or ‘color’. The purpose of this activity is to observe the visual performance of the child as well as their knowledge of shape, size and color. This activity is based on ABELLS, according to which the children above the age of 3 can perform it correctly.
4. Recognize Emotions
A child diagnosed with autism often faces difficulty in reading the facial cues and expressions of another person. In this activity, we ask the child to identify the expression shown in the picture. We used three emotions, i.e. ‘happy’, ‘sad’ and ‘crying’. We used the symbolic round-faced pictures for the testing purpose.
User Testing and Results
Test Sample
We tested our activities on 16 typically developing children to analyze their ability to perform these activities.
Test Results
The user testing results are as follows
1. Sally Anne Task
We tested this activity on 4 children. None of those children were able to understand the scenario. We did not test further because we got the clue that 4 years old cannot understand this activity scenario. Also, according to the teacher, this activity is difficult for 4 or 5 years old. According to her, “4-year-old cannot understand this scenario. You can test this activity on 6 or 7 years old child, but I highly doubt that even an average 5-year-old can understand this activity”. The quantitative result of this activity is given in the figure below.
2. Identify the missing animal
We tested this activity on 16 children. 8 children were able to correctly identify the missing animal. 3 children did not identify the correct animal and 5 children were not responding to our question. It was also clear that children with greater age i.e. above 4 years were able to correctly identify the animal than 3-year-old children. The children of junior most class, who were new to school, were not responding. Commenting on the behavior of a child who was not responding, the teacher said, “He is new in school and is still struggling to adjust in the school environment. We haven’t taught him about animals and colors, so he has no understanding of which animal is displayed in the page.” Following is the quantitative result of this activity.
3. Match the Object
We tested this activity on 16 children. In first set, 5 children were able to correctly match the objects. 7 children were able to match the object correctly, but they didn’t know the reason i.e. they were unable to identify the property through which the two objects match each other such as color. For example, one child gave the correct answer but when the examiner asked the color of the red car, he simply said, ‘I don’t know’. 2 children answered the wrong match and 2 children were not participating at all. Similarly, in second set, 4 children were able to identify the correct match along with correct reasoning. 5 children answered the correct match but were unable to identify the reason. 4 children did the match wrong and 2 children were not showing any interest in the activity. Many children were having trouble in recognizing the color and animal in the picture. Children were not recognizing ‘Jerry, the mouse’, which we assumed is the famous cartoon character.
4. Recognize Emotions
In this activity, 7 children were able to recognize ‘happy’ emotion, 8 were able to recognize ‘crying emotion’ and only 6 managed to recognize ‘sad’ emotion. More children were able to identify crying because of the tears in the emotion. Few children did not recognize the correct emotion and some children were not responding to our queries. This activity was difficult for the children as they were unable to identify the correct emotion displayed in the image. Some children were unable to recognize the emotion at first glance but if we presented them a verbal cue such as ‘is the baby happy?’, then they respond with right yes/no answer.
Expert Opinion
After completing the testing and compiling the results, we went to a psychiatrist with the results and video recordings to get a review. The psychiatrist pointed out some modifications in the original design of the activities to meet the culture of Pakistan.
Insights
01
Two-step commands are important to assess the attention span of the child.
02
The child will be more focused if the examiner gives him/her clear instructions.
03
Children appeared to be less familiar with the English language.
04
Many psychological tests that were developed in the West are not applicable here. They need to be altered to meet our needs.
Redesigning Activities
Some activities that we designed, could not be tested manually so we had to omit them from this study.
Heart and Flower Activity
The purpose of this activity is to assess the shifting ability of the child. It is based on theory of Executive Dysfunction. In this activity, a heart or a flower randomly appears on the screen. The child has to click on same side of heart and opposite side on flower. In total, objects appeared randomly on the screen. The number of correct responses and the mean latency of the correct responses will be calculated to access the shifting ability of the child.
Identify the Missing Animal
This activity is also based on the theory of Executive Dysfunction. It checks the working memory of the child and how well a child can hold two pieces of information simultaneously in mind. At the start of the activity, a page with a house outline is shown along with an animal and a coloured object such as the sun or a tree. The examiner must make sure that child knows the animal and the object. On the next page, only the outline of the house appeared. The child has to answer which animal was shown on the previous page that is missing from this page. Three such images were shown. The idea behind this activity is to see whether a child is able to hold two pieces of information i.e. animal and a coloured object. It also checks whether the presence of a coloured object diverts the attention of the child or not.
Match the Object
In this activity, child has to match the object with other three objects displayed in the screen. Three set of images were shown. The purpose of this activity is to see the visual performance of the child as well as the knowledge of shape, size and color. This activity is based on ABELLS according to which children above the age of 3 can perform it well. However, according to our findings through 37 manual testing, children in Pakistan above the age of 4 can perform this correctly. An object will appear on the top center of the screen and 3 other objects will also appear on the bottom of the screen. The child has to select the object which is similar to the object in top center in respect of shape, size or color.
Solve the Puzzle
This activity is used to see the visual performance of a child as well as his sense of proximity. This activity was based on the ABELLS. According to ABBELS, typically developing children above the age of 3 can perform this activity successfully. The child is asked to match the objects with their container. Five objects appear on the bottom of the screen and their similarly shaped containers appear on the top of the screen. The child has to drag the objects in their respective shaped container. When the object is dragged to its right container, the container turns green. It turns red otherwise.
Recognize Emotions
A child diagnosed with autism often face difficulty in reading the facial cues of another person. In this activity, we ask the children to identify the expression shown in the picture. 6 images were shown in a sequence. We used real kid’s images because from our manual testing and psychiatrist comments, we found that children identify expressions on real person images better than symbolic round-faced pictures.
Additional Features
Some activities that we designed, could not be tested manually so we had to omit them from this study.
Final Testing
Test Sample
Typically developing children performed this test in their homes in front of their parents. To get the result on autistic children, we went to an autism center. So, for typically developing children, parent use this Application and for autistic children, teachers use this Application.
Test Results
The final testing results are as follows
Heart and Flower
The results of this activity in typically developing children were very dispersed. The children with older age i.e. 5 years were able to perform it whereas younger children were having trouble remembering the instructions. They understood the instructions, but their mind could not process the shifting attention.
Autistic children were unable to perform this activity. They were clicking on the images but were unable to comprehend the instructions.
The score cannot give accurate insight because the images appeared randomly, and clicking on the right side could be just a coincidence. However, it was observed that older typically developing children can understand the instructions, as well as perform this activity without any trouble. Autistic children were having trouble understanding the instructions and focusing.
Identify the Missing Animal
All the typically developing children were able to recall the missing animal. One child said, “this game is so easy. I can play car racing games too”. One typically developing girl was having trouble recalling the animal, but she also guessed it right because her sister gave her the hint. Only 1 autistic child was able to recall a dog and a cat. She was, however, unable to recall parrot. Autistic children were not listening to instructions properly and were eager to click on the screen and buttons. According to their teacher, “their attention span is very less and currently, they are not focused”.
Match the Object
All typically developing children were successful in matching the objects. They thought that this activity is simple and easy. Autistic children had trouble matching the correct object. They were not listening to instructions given to them by their teacher. However, they appeared to enjoy this activity. They click randomly on the objects, not considering the property that matches. 3 autistic children were successfully able to match a pen with a pencil. 2 children were able to match an apple with shoes and only one child managed to match a parrot.
Solve the Puzzle
Almost all typically developing children were able to solve the puzzle. Two typically developing children have trouble in matching Triangle and Dimond. Triangle was also hard to drag across the screen. Only two autistic children were able to successfully match all the shapes. Children from both groups, enjoy this task. One autistic girl had trouble in dragging the images. She asked the examiner to hold her hand and help her in dragging the objects to their respective container.
Recognize Emotions
Almost all typically developing children were able to identify the emotions. Only one typically developing girl of age 3 have trouble in recognizing emotions. None of the autistic children were able to identify any emotions. The teacher said that, “It is very difficult for these children to recognize facial expressions. We can try this activity with them, but these children have not developed their emotion recognition skill.” The children were not listening to the instructions, nor were they recognizing the emotions. But they were eager to click randomly on the buttons.
Conslusion
The result of our second study verified that this application can be effectively used for the screening process. This application can reduce the screening time and trips to hospitals.
Autism diagnosis is a major challenge for parents, teachers and medical professionals in Pakistan. The screening tools that are widely used in West, fail to give a right diagnosis because of social and cultural variation in children of Pakistan. The studies that we conducted during this project, aims to provide an insight in autism diagnosis process in Pakistan and assist in Autism Diagnosis. A mobile/tablet-based application is designed and developed, that can be used by parents and teachers to screen the child. This application was tested on limited number of participants, autistic well as typically developing children between the age of 3-5.
This application is only assisting in autism diagnosis and not giving a final verdict in any case. The final diagnosis will be made by a certified professional after observing the results of activities, screening tools and videos of the child.
