Comin: An online platform connecting autistic children's parents to professional home intervention resources
Since my undergraduate years, I've been working as a volunteer at BSREI , the first Chinese NGO aimed at providing guidance for autistic children's behavior training.
Over 5 years experience as a training assistant facilitated me to look at the current situation of the Chinese autistic children and their families in a broader perspective: the dilemma between the increasing number of autistic patients and the weak support system for them.
I wondered how design can bridge the gap between professional resources and people with autism, and stimulate the development of the entire caring industry on autism in China.
UX design & Research project
User interview, Contextual inquiry, Task analysis, Persona defining, UX ideation, Wireframing, UI design, Prototyping
Children with autism,
Early behavior intervention
Online education platform
What is Autism?
Autism is a kind of mental disorder. Due to a series of social and learning deficiencies,
autistic people need behavior training from an early age in order to integrate into society.
Characteristics of autism
As a developmental disorder，autism could not be fully healed by medicine. It may firstly occur during patient’s childhood. Overt symptoms gradually form at the age of six months, and become established at the age two to three.
Autism could be distinguished by a characteristic triad of symptoms: impairments in social interaction, impairments in communication and restricted repetitive interests and behaviors.
Autism and Related
Environment in China
With the the largest number of autistic people, China's autism study and supporting systems started late. Most autistic people can't be covered by the existing service system
Road map of autism study in China
In China, Research and diagnosis on autism started nearly 30 years later than developed countries. At present, there are over 10 million autistic patients in mainland China, including over 2 million children aged 0 to 14.
With the patients’ number increasing year by year, the existing rehabilitation measures and policies for autism can only cover 1.3% of the patients, and the remaining 98.7% can not get effective rehabilitation training.
Due to the shortage of training resources, many autistic children were harmed by untimely and inappropriate therapy.
Extreme cases in recent years
Zhang, a mother of an autistic boy from Dandong, Liaoning province, sent her son to the Tiandizhengqi center in Guangzhou's Panyu district on March 2. She was informed that her son died on April 27.
The instituion used punishing exercise regimes to treat autistic children. They made children walk up to 12 miles a day and "cure" them through sweating.The founder believed that autism is a disease of "rich and lazy".
"GIVE BACK MY
CHILD'S LIFE "
The died autistic boy's
father was protesting
An autistic boy died after
26 April 2016 / Guangzhou China
Why did parents send their children there?
" —In my town, I have no alternative choice for my child."
" —Other professional institutions had a two-year waiting list, besides we can't afford the high training
" —For us, at least it provided a glimmer of hope."
*Excerpt from an interview with the child's father
Many parents are not clearheaded about the situation of their children and also lack professional knowledge about autism. In China, there is a negligent supervision over institutions for autistic children.
With the number of autistic children growing,
how can we make the best use of existing resources and innovate more support to help autistic people integrate into society?
Any key factors , that can significantly change the life of autistic people？
Know more about
an Autistic Life Path
The life path of an autistic patient can be roughly divided into five chapters.
By reading the documentary materials written by parents and social workers during my volunteering. I divided the general autistic life path into the following five interlinked parts. Each one of the front four has a far-reaching impact on the quality of their adulthood life after entering society.
Getting appropriate early behavioral intervention (3-6 years old) is the decisive factor for autism patients to integrate into society.
Whether it can be implemented scientifically depends on their parents.
In the whole system, training institutions are somewhat playing a connecting role. If diagnosed autistic children at key developmental stages(3 to 6 years old) receive autism-appropriate behavior intervention are more likely to gain essential living skills and react better in society. In addition, the probability of entering into generic primary school and acting like normal kids will be drastically increased. However, according to my research and volunteering experience, this link is very problematic in China.
Content & Principles of early intervention:
Applied behavior analysis (ABA) is the key principle for early intervention.
Discrete experimental training (DTT) is an effective structured training mode based on ABA, which is widely adopted to help autistic children learn skills.
Information about ABA and DTT:
ABA applies the science of "behaviorism" to bring meaningful changes to individual behavior.
DTT, is a structured ABA technique. It is proved to be particularly effective for teaching skills to children with autism. The key aspect of DTT is that it breaks behaviors down into very small, discrete components, and reinforces them methodically. Then sequentially build up these components into one overall desirable behavior.
Due to its universality, parents can draw inferences from few instances and develop their children's skills in all aspects.
Constructions of a DTT routine
The most personalized and tricky part of DTT training is reinforcement/ assistant. It is quite demanding for parents. Parents need to make gradual responses according to children’s changing performances to correct children's wrong behaviors and help them master skills.
At present, how do parents
learn ABA & DTT method ?
Currently, parents need to take children to institutions to master ABA & DTT training methods, then go back home and apply theories to real-life behavior practice on their kids.
Due to the impact of autism on brain development varies from child to child, the severity and symptoms of each child are different as well.
In order to know child's condition clearly and learn the corresponding training methods, taking children to hypostatic institutions is the current available approach.
However, training institutions in China for autism are unevenly distributed in terms of professionalism. In order to obtain high-quality guidance, a large number of parents chose to take their children to nonlocal institutions.
Categories and Geographical distribution of training institutions in China
Data from “Current Situation of Education for Autistic Children 2018”
Among the four types of training institutions, private institutions are the mainstay, most of which are founded and operated by the prestigious parents in the local autism community. Due to the limited funds, faculties and facilities are substantially primitive.
In China, these institutions for autistic children are geographically unevenly distributed. Institutions, especially the renowned and qualified ones, are concentrated in large cities. Resources are extremely scarce in medium and small towns, where the scale of autistic people is not small at all.
Realizing the decisive and positive impact of early intervention ( ABA & DTT),
I decided to further investigate parents' experience of theory learning in institutions and the training process with their children at home.
Focused on: 1. institutions's service mode 2. parents' voices
3. expert interview
Know the people in institutions
Crowd classification and characteristics learning
Through the analysis of the people in the training institutions, people who directly affect autistic children in the training process can be divided into four categories.
In a typical autistic children’s family, one of the parents usually quits his/her job and becomes a full-time caregiver (mothers in most cases or could be retired grandparents in some cases ). Then the other parent needs to take the responsibility of making money and becomes a breadwinner.
In the training institutions, people who provide help for autistic families are mainly trainers, supplemented by volunteers. Trainers develop training programs for families and tutor the parents to learn training methods. The main responsibility of volunteers is to help parents take care of their children in class.
Through the interview, I learned that many parents are not satisfied with the training effect. Although having learned the correct method in theory classes, they found that the effect was not as expected when they returned home to practice.
What I got from the Expert Interview
Several trainers I interviewed said that an important reason for this ' dissatisfied phenomenon ' was that parents may not follow the training methods strickly and they are generally weak in execution at home. Since parents are used to spoil their children in their old wrong way, teaching methods such as ABA usually can be hardly implemented at home effectively without any supervision and guidance. After returning home，many unpatient parents often leave their children to do whatever they want and meet all their needs especially when the children fall into emotional breakdown. That causes the method unable to carry out effectively.
In addition, autistic children always need a long-term to master skills, yet parents are too eager to see noticeable changes on their children. Hence it is quite common for parents to lose patience in the process. Lack of supervision from teachers, some parents would give up halfway and look for alternative training methods. Unfortunately many of the alternatives are scientifically unsubstantiated which may even worsen the situation or cause physical harm to children.
around the institution
Current user journey in the institution
Click the picture to view details.
By tracing the current service blueprint, I found that the unsatisfactory training effect is largely due to the lack of remote interaction and after-school services. The interaction link is weaken and missed when parents go back home.
Parents have to wait until the next class to feed back the last training record to trainers and get suggestions on the last home practice. However, the training plan is always advancing over time, those ineffective feedback cannot be applied to the next training process. Their previous training process lost the opportune moment to be improved and consolidated in the right way.
After finished the whole course, families from different places return to their hometowns. it is difficult for them to set up proper training plans being short of guidance and supervision from trainers.
Due to lack of supervision and lack of pleasure in the process, I always have a poor motivation and easily deviate from the training plan.
" If there is an alarm to remind me and make the training process more fun, I will be more
motivated to do DTT training."
In practice, I still have a lot of confusions about DTT training. Like sometimes I am not very clear about when to give children proper assistance and reinforcement, and how many rounds a task count as enough.
" If there are clear instructions telling me what to do in each step during training at home, it will save me more effort, besides I may make fewer mistakes."
During the DTT training with my kid at home, at home there is no professional trainers to correct my Improper conduct in time. I could repeat the mistakes to my kid in the training process again and again.
" If I can share the training process with a professional trainer and let him point out my improper operations, my home training may be more effective."
Paper and notebook are not sufficient to record the training process completely. I often forget which round I am doing in the process. Besides due to the deficiency of records, I am not able to introspect and correct the problems for the next training.
" If it is possible to record my home training process with my phone. Then I could review the previous training process at any time, find mistakes in it, and also appreciate the progress of my child."
I feel helpless and pessimistic when I carry out DTT training at home with my kid. In the institution, I was accompanied by other parents and trainers, however at home, there is no one I can talk about my troubles with and share the joy of my children’s progress with.
" If I can communicate with other parents during the training process and share the progress of my child, I would feel that there are others accompanying me to step foreward and I might gain more motivations."
The preasure from the high cost of autism treatment and rehabilitation is somewhat unbearable. Since I quitted my job to take care of my child full-time, it's a huge burden for my husband to take the responsibility of making money and supporting the family on his own.
" I hope that I can use my spare time to share my experience with other fresh parents for a remuneration, so as to reduce my economic pressure."
For NGO institutions, with certain capacity
1. How to improve the training effect and prolong the current service period?
2. Is there any way to make these professional training resources cover more autistic children and help more families?
As for parents,
How to integrate ABA & DTT theory learned from institutions with practice at home more effectively?
Optimize the current service flow by adding an OTO experience
Integrating parents' pain points, an online to offline service mode was designed to link courses in the institution with parents' home practice. Meanwhile, it aims to improve the intervention effect by building a closer relationship between different parents and trainers.
Click the picture to view details.
Wireframe of the Home Training Application
Start screen and task Preview
Task details and user comments
DTT training guide
Task review and communication
UI Design and HI-FI Prototype
Logo, Icons and Color Standards
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