Children with autism face multiple dilemmas, digital medicine or an ice-breaking tool

On March 29 this year, at Xiangfei Special Education School in Yingzhou District, Fuyang City, Anhui Province, teachers, parents and children with autism played a mutual aid game together. Courtesy of Visual China

In the past two years, Jia Meixiang, chief physician of Peking University Sixth Hospital, led a team to conduct an epidemiological sample survey of autistic children in 5 provinces and cities across the country, with a sample of 100,000 people. The survey results show that the prevalence of children with autism is 1.21%. According to the results of the seventh national census of the State Council, in 2020, the population of the mainland aged 0-14 will be 250 million. "According to this ratio, the number of children and adolescents in the mainland will exceed 3 million, plus adult autistic patients, and it is conservatively estimated that the number of autistic patients on the mainland should be more than 5 million." Jia Meixiang said.

The proportion of children with autism varies widely between men and women

In 2021, the U.S. Centers for Disease Control and Prevention released data showing that the prevalence of children with autism in the United States is 1:44 (about 2.2%), of which the confirmed rate of boys is 4 times that of girls, which is basically consistent with the results of Jia Meixiang's survey. Why is the proportion of men and women so disparate? Dr. Jining, director of the Academic Strategy Committee for Brain Health at Peking University, explained that this may be related to the biological factors of autism. From a genetic point of view, humans have 22 pairs of autosomal and 1 pair of sex chromosomes, boys' sex chromosomes are xy, girls are xx, if there is a problem with the X chromosome, the probability of the disease in boys is 100%, while girls are 50%; on the other hand, previous studies have found that 70%-90% of autism is contributed by heredity, and many genes have a protective effect on women, while men are susceptible. During the developmental period, the immune system, neurotransmitters, etc. are affected by such as testosterone hormones, so boys during development are more likely to suffer from autism than girls.

A number of policies have benefited children with autism, a group that still faces difficulties

Jia Meixiang introduced that the education and rehabilitation of children with autism has always been highly valued by the state, and relevant policies are constantly improving. In 1988, the China Disabled Persons' Federation was formally established; in 1994, the first special administrative regulation on special education in the mainland, the Regulations on the Education of the Disabled, was promulgated, emphasizing that the education of the disabled is an important part of national education; in 2006, after autism was included in the scope of disability assessment, a series of social policies on the basic living security, compulsory education and rehabilitation of children with autism were introduced; in 2010, the former Ministry of Health issued the "Guidelines for the Diagnosis and Treatment and Rehabilitation of Children's Autism". Specific guidance is provided on the diagnosis, intervention and prognosis effects of autism.

During the "Eleventh Five-Year Plan" period, the mainland incorporated the rehabilitation subsidy for autistic children into the career development plan for the disabled; after the "Twelfth Five-Year Plan", the central government began to continue to support the rehabilitation assistance project for disabled children, and subsidized the rehabilitation training of poor autistic children through the "Colorful Dream Action Plan", with a subsidy standard of 12,000 yuan per person per year; in 2008, the State Council issued the "Opinions on Establishing a Rehabilitation and Assistance System for Disabled Children", which clearly required that children with autism aged 0-6 be included in the scope of assistance. Tianjin and other 12 provinces (autonomous regions, municipalities) have lifted the restrictions on the economic conditions of the applicant's family, Beijing, Shanghai and other 20 provinces (autonomous regions, municipalities) on the basis of the "Opinions" of 0-6 years old, expanded the age range of rehabilitation assistance for disabled children, Liaoning, Zhejiang and other 7 provinces expanded the rehabilitation assistance content for disabled children, Beijing, Shanghai, Jilin, Zhejiang 4 provinces (cities) rehabilitation training and assistance standards for autistic children have reached more than 24,000 yuan per person per year.

In 2009, the Opinions on Further Accelerating the Development of Special Education clearly proposed that children with autism should be included in the compulsory education system, and children with disabilities of school age in child welfare institutions should be guaranteed compulsory education. In 2017, the revised Regulations on the Education of persons with Disabilities were officially promulgated, proposing equality in education, integrated education for persons with disabilities, and no refusal to accept persons with disabilities.

Jia Meixiang also pointed out that although the state's attention and support for autism groups are constantly progressing and developing, the autism rehabilitation industry in the mainland is still facing more serious problems. "The first is the lack of ability to diagnose autism. Whether children with autism can be detected in time or not, child psychiatrists play a crucial role. Jia Meixiang said. However, there are fewer than 500 child psychiatrists on the mainland, and 50% of them need more assistance in diagnosing autism. Lack of diagnostic experience is one thing, more or less intervention technology, 21.4% of doctors said "lack of children's problem behavior management technology", 20% of doctors said "lack of intervention plan to explain to parents".

Jia Meixiang believes that the diagnostic ability of children's psychiatric problems should be vigorously cultivated among pediatric and pediatric system doctors, so that they can master the diagnostic methods of autism in order to achieve early detection and early intervention. "If children with autism can be detected early, treated early, and systematically intervened and trained, some children can return to mainstream society." Jia Meixiang said. At the same time, doctors also need to be able to teach parents to understand the various problems that will occur in the training process of autistic children, and help doctors and rehabilitation teachers complete rehabilitation training, which involves the organic combination of "medicine" and "teaching".

Secondly, the limited resources for autism rehabilitation education are also a serious problem. Although the total number of rehabilitation and education institutions for autism is on an annual trend, it is still insufficient relative to the total number of autistic people. According to the official website of the China Disabled Persons' Federation, as of the end of 2020, the number of rehabilitation institutions for children with autism in the country reached 2681, an increase of 443 compared with 2019, while in fact, there are many rehabilitation institutions for children with autism that are not listed on the official website of the China Disabled Persons' Federation. According to Jia Meixiang's estimates, there are about 6,000 rehabilitation institutions for children with autism in the mainland. Although the number of rehabilitation institutions is huge, it is still difficult to meet the demand, and the level of these institutions is uneven, the quality of training in many institutions is not satisfactory, and the quality of rehabilitation teachers needs to be improved urgently.

In addition, the dilemma faced by older people with autism cannot be ignored. Jia Meixiang was the first autistic child patient to be treated, and the first case of autism diagnosed in mainland China, who is 53 years old this year, and his parents have passed away. With the help of Jia Meixiang, he now lives in the "Elderly Vocational Skills Training Base" opened by the Beijing Autistic Children Rehabilitation Association, doing some work within his ability under the leadership of the rehabilitation teacher. The employment problem of older people with autism is undoubtedly a huge challenge. Jia Meixiang learned that among the autistic patients who participated in the survey, only 11% of the autistic patients who were full-time employed and had stable jobs, 7% of the autistic patients engaged in freelance work, and 81% of the autistic patients had no job. Even those with autism who have jobs, many work in small businesses run by parents or relatives and friends. "The lack of rehabilitation and education institutions and social integration places for elderly autistic patients, and the lack of social security benefits, these are all problems that need to be solved by the government." Jia Meixiang said.

"Digital" products may become a burden reduction tool for rehabilitationists and families

Digital medicine is the annual hot word in 2021, Jia Meixiang's team found in the survey that in the autism rehabilitation industry practitioners, 86.43% of rehabilitation engineers have expectations for digital products. The rehabilitationists who participated in the survey said that in their daily work, what is most needed is a digital product with practical guidance and training plan formulation functions that are truly suitable for rehabilitation scenarios to help them reduce work pressure and improve.

At the recently held "2022 World Autism Day Digital Medical Outlook Summit", participating experts introduced that the application of digital technology in the field of autism and child mental illness currently focuses on two aspects, one is screening, that is, the use of digital technology to detect problematic children early; the other is to promote intervention, that is, the use of digital means to continuously manage rehabilitation, so that children can receive continuous intervention training at home.

In 2022, Peking University Sixth Hospital and Peking University Medical Brain Health jointly launched a clinical verification work on a digital treatment procedure around comprehensible language (recognizing common objects) in children with autism. According to experts, children with autism need to carry out nine skills training such as attention and cognitive ability, and at present, these trainings are completed offline by rehabilitation teachers to guide children. Using digital products, you can let your child complete the training at home under the guidance of the software. This approach can get rid of the limitations of time and space, and the advantages are particularly prominent during the epidemic.

Jia Meixiang told the China Youth Daily and China Youth Network reporter that a 4-year-old boy in the experimental group under the guidance of a mobile phone program underwent 15-20 minutes of intervention training at home every day, and basically mastered the target skills after two weeks. Up to now, the 11 groups of children in the experimental group have shown good treatment effects compared with the 7 groups of children in the control group.

Jia Meixiang pointed out that the important value of digital products is that they can break through the limitations of traditional rehabilitation treatment, make up for the lack of rehabilitation professional strength, increase the time of family intervention, and reduce the cost of treatment. At the same time, digital technology also provides great convenience for children's rehabilitation, and digital products also reduce the difficulty of parents helping their children with rehabilitation training at home, reducing the burden on families.

Participating experts believe that digital medicine in the field of children's rehabilitation is still just starting, there is still a long way to go from large-scale application, requiring medical experts and artificial intelligence experts to work closely together, but also need the support of the whole society, in order to develop a truly valuable and effective digital therapy, truly help every autistic child and his family.

China Youth Daily, China Youth Network reporter Xia Jin Source: China Youth Daily