Today, you need to know these data about "autistic children"!

In 2020, the APEC Institute of Health Sciences of Peking University, Beijing ALSOLIFE Technology Co., Ltd. (ALSOLIFE), the Institute of Neuroscience of Peking University, and the Aier Charity Foundation jointly formed the "China Autism Family Status Social Survey Project Team" to begin a comprehensive investigation of the current situation, needs and support of people with autism and their families across the country, and write a report.

After three years of research, the "Survey Report on the Current Situation, Needs and Support Resources of Families of People with Autism and Neurodevelopmental Disorders in China" was officially released to the public on May 26. It aims to show the real situation and practical difficulties of people with autism and their families in China to the whole society and provide a basis for government decision-making.

Many of the data in the report are shocking. We have distilled some issues of concern to parents and practitioners and explained them to you.

I hope you can also spread these facts in your own way so that our group can be seen and heard.

A special survey covering genealogical families across the country

In October 2020, we published an article through the "ALSO Autism" official account, formally calling on parents of children on the spectrum across the country to actively participate in this questionnaire survey, fill in real data with an objective and prudent attitude, make our voices heard and reflect our needs.

This survey set up two sets of questionnaires, one for preschool and one for compulsory education. The preschool questionnaire mainly focused on treatment and intervention, while the school-age questionnaire mainly focused on school integration.

Half a month later, the survey team obtained 9,280 samples, and after screening, they finally got 8,124 valid questionnaires, including 5,106 in the preschool group and 3,108 in the compulsory education group. This can be said to be the most extensive and largest sample size related survey in China so far.

Geographical distribution of respondents

The respondents who participated in this survey covered all provinces, autonomous regions, municipalities and special administrative regions in China. Before this survey, there had not been a social survey in China with such a sufficient sample coverage and such a large sample size targeting families of people with autism and neurodevelopmental disorders. The top three provinces in terms of sample size were Guangdong, Shandong and Fujian. There were 23 provinces with more than 100 respondents, which represented the overall situation in China relatively well.

The autistic children involved in the survey ranged from 1 to 16 years old. Except for the 15-16 years old age group, where the number of children was less than 150, the number of children in other age groups was more than 150.

The main interviewees are parents of autistic children, mainly mothers. This also shows from the side that in China's current social and family environment, mothers bear greater responsibilities for their children.

The divorce rate among parents of children with autism is 10 times the national rate

Marital status of parents of children with autism

Divorce rates in each year from 2010 to 2020 (data source: China Statistical Yearbook 2021)

The data shows that 3.2% and 5.4% of autistic children in the preschool group and compulsory education group respectively have divorced parents, which is much higher than the social average.

According to data from the National Bureau of Statistics, the divorce rate in my country was between 2.00‰ and 3.36‰ from 2010 to 2020, and the divorce rate of parents of children with autism was an order of magnitude higher than the social average. Another 6% of families in the preschool and compulsory education groups reported that although the couple had not divorced, they had actually separated.

However, coexisting with the divorce rate which is 10 times the social average, approximately 52%-55% of the respondents reported that after their child was diagnosed, their marital relationship remained at the original level or even improved.

We try to explain why the marriage status of families with autistic children is so strange.

On the one hand, when a child is diagnosed with autism, a lifelong disease, under tremendous blow and pressure, the party with a lower sense of family responsibility will consciously or unconsciously escape, triggering a reaction from the other party, leading to divorce or separation.

How a couple's relationship changes after their child is diagnosed with autism

On the other hand, for parents with a strong sense of family responsibility, when faced with the special case of autism, they will be of one mind and face this misfortune in life with an accepting attitude. Both parties will work together for the future of their children, and the result is a more stable relationship between the couple.

54% of mothers of children with autism are unemployed

Data shows that in families with autism, 4% of fathers and 54% of mothers are currently unemployed. Taking into account , nearly 58% of families have only one parent (mainly fathers) who has a job (including temporary part-time jobs), resulting in an annual family income loss of approximately 67,000 yuan .

Moreover, this unemployment is not a temporary behavior of a few months, but several years (33.7 months for fathers and 46.8 months for mothers) without being able to return to the workplace. Considering the fierce competition in the workplace in China, these parents who make sacrifices for their children have basically lost the possibility of returning to work in their familiar fields.

Father's current occupational status

Fathers bear greater financial pressure. Among the 96% of working fathers, 46% would choose more arduous or complex work to earn higher income to support the high intervention costs for their children.

Mothers bear greater pressure of raising children, and 54% of mothers give up their jobs completely to accompany their children to grow up for years.

Mother's current occupational status

At present, the incidence of autism is so high. Scientific research tells us that any ordinary person has the probability of raising a child with congenital disabilities. Autistic families are actually taking risks for the entire society. Our society and country should provide more precise assistance to them, face them with a tolerant and accepting attitude, and reduce the pressure on autistic parents from both economic and psychological aspects.

Public opinion on autism needs to be more scientific, accurate and comprehensive

What did you know about autism before your child was diagnosed?

In response to this problem, compared with parents in the compulsory education group, the proportion of parents in the preschool group who "have never heard of autism" dropped from 55.4% to 46.2%, indicating that the public's awareness of autism has increased.

Parents' descriptions of autism

Unfortunately, although there is a generation gap of about 4 years between the parents of the preschool group and the compulsory education group, there is no significant difference in the cognition of autism between the two groups. Some have correct cognition, while others have completely wrong cognition. This shows that the media and public opinion propaganda in the past 4 years is not more scientific, accurate and comprehensive than that 4 years ago.

At present, the media still has the tendency to follow the crowd (such as the intensive publicity on World Autism Day on April 2 every year), masking (autism art exhibitions, autism concerts) and stigmatization (autism parents abandoning their children, committing suicide, autistic children being boycotted by their parents, etc.). How to introduce autism to the general public in a scientific and comprehensive way should be the focus of the transformation of journalists. After all, the vast majority of ordinary people learn about autism through the media.

I would like to emphasize that the age at which abnormalities were discovered in the preschool group was significantly lower than that in the compulsory education group (25.5 months vs. 30.1 months), which is 5 months earlier. Autism intervention emphasizes "early detection, early diagnosis, and early intervention". Early detection of abnormalities corresponds to early detection, which is of great significance for early intervention of autistic children. This shows that after 4 years, parents or other people have become more sensitive to abnormalities in children's development, which is a very obvious social progress.

Who reminds or discovers the child's abnormality?

On the other hand, most families discovered their children’s abnormalities through self-awareness. Even if the abnormalities were discovered through reminders from others, more than 50% were reminded by non-professionals such as relatives or others, and the overall proportion of early abnormalities discovered by professionals (child health or pediatricians) was less than 10%. This shows that most children in China were not discovered to be abnormal through early screening, reflecting that China had not yet established a complete autism screening system at that time.

Early intervention costs are huge and far beyond the ability to pay

Monthly cost of early intervention

Per capita disposable income of national residents from 2016 to 2020 (data source: National Bureau of Statistics)

Nationwide, the direct cost of institutional intervention for families with autistic children is 6,957 yuan per month . Taking rent, transportation and other expenses into account, the average monthly cost of intervention-related matters for families with autism is 9,485 yuan per month, close to 10,000 yuan per month, and the average annual cost is 115,000 yuan. The above costs do not include the daily expenses required for normal family life, which is shocking.

Do parents save money for their children? 80% of families said no, because they have no money, and have even sold their houses and borrowed money to intervene, let alone save money.

The survey shows that more than 40% of families have interrupted their children's early intervention. The main reasons are that they cannot afford the costs, lack confidence in the effectiveness of the intervention, and there are no intervention agencies where the family lives.

This is the case at the early intervention stage. When children with autism reach school age and old age, they still need continuous financial support. What should we do? How to financially support the families of the spectrum, build a good family support system, and realize the sinking of rehabilitation resources are the core of solving the corresponding problems in the future.

Early intervention is mainly provided by private institutions designated by the Disabled Persons’ Federation, and parents’ satisfaction is not high

**Among the types of autism early intervention institutions chosen by parents, private institutions designated by the Disabled Persons’ Federation ranked first at about 45%, indicating that private institutions still play a core role in the field of autism early intervention. **If private institutions not designated by the Disabled Persons’ Federation are taken into account, more than 70% of children receive early intervention in private institutions.

61.9% of parents gave a subjective evaluation of existing institutions as average or below, and their dissatisfaction mainly focused on two aspects: teachers were not professional enough (75.6%); the fees were high (69.4%).

The main reasons why respondents are dissatisfied with current early intervention agencies

Compared with public institutions run by hospitals and the Disabled Persons' Federation, private institutions receive relatively large differences in financial support, technical support, and policy support. It is recommended that the government assume more supervisory roles, bring more private institutions into the Disabled Persons' Federation designated system, accept the Disabled Persons' Federation's supervision and management, introduce competition and elimination mechanisms, and allow the entire industry to operate healthily and efficiently, providing parents of autistic children with more high-quality and low-cost options, improving the effectiveness of interventions while reducing the financial burden on parents.

Preschool integration has a long way to go

The survey shows that the proportion of autistic children who are currently being integrated in kindergartens is 42.6%, the proportion of children who have been integrated in kindergartens is 14.0%, and 43.5% of autistic children have never/have not yet entered kindergarten for integration.

Among the kindergartens that are participating in integration, only 7.6% are equipped with special education teachers, and on average each special education teacher serves 3.7 children with special needs.

Special Education Resources for Kindergartens

This shows that the vast majority of kindergartens do not provide targeted support to children with autism as individuals who need special support, but rather provide corresponding preschool education for children with normal development.

The possible consequence of indiscriminate inclusive education is that for some children with poor basic abilities, if they do not have special support, they are more likely to be "mixed" rather than "integrated" in kindergarten. Nearly 40% of the respondents' reports also showed that parents subjectively evaluated that their children "basically learned nothing" in kindergarten.

Integration of compulsory education: Hardware first, but lack of software

Current placement status of children in the compulsory education group

Among the 3,108 children in the compulsory education group (6-16 years old), a total of 61.7% of the children are receiving compulsory education in public schools (45.5% ordinary schools; 16.3% special education schools); 29.1% are still in intervention institutions; and 9.2% of the children are currently in a home environment receiving home-based education.

Although many children have entered school integration, this survey shows that only 16.5% of ordinary schools have resource classrooms, and only 11.6% have full-time or special education resource center resource teachers. How to speed up the construction of special education support resources and whether to speed up the construction of special education support resources through social forces may be one of the key points for subsequent consideration by education authorities and government decision-making departments.

The configuration of resource classrooms and resource teachers in general schools

Data shows that 6.8% of autistic children dropped out of school for various reasons after entering regular schools. 50% of them dropped out in the first grade, which again shows that the learning and living environment of regular primary schools is very different from that of preschool kindergartens. It is necessary to conduct special assessments before students enter school to find the obstacles that affect their integration and conduct targeted intervention exercises. Direct transition without preparation will bring huge challenges and pressure to autistic students.

After the fourth grade of primary school, the cumulative percentage of students dropping out exceeds 80% , which to a certain extent indicates that by the third and fourth grades of primary school, as the academic difficulty increases, autistic students will encounter the second major challenge in ordinary primary schools.

Challenges of integration in mainstream schools

Looking forward to more precise and wider national assistance policies

At present, the country's support for the autistic group is mainly reflected in early rehabilitation subsidies. Each province, region and city has its own subsidy standards. Nationwide, the average monthly rehabilitation subsidy is 1,621 yuan/month, and the mode is 2,000 yuan/month. This means that for the intervention costs of autistic children, the country will subsidize each child an average of about 20,000 yuan per year.

Reasons for not enjoying or applying for rehabilitation subsidies

Among the families that received rehabilitation subsidies, 76.5% of the subsidies were paid to the institutions where their children received interventions, and only 23.5% of the regions paid the subsidies directly to parents through reimbursement by parents. The advantage of the latter is that parents can make relatively free choices among different institutions based on their own judgment, and the children's courses can also be more flexible, avoiding the possible consequences of being tied to an institution.

The survey shows that about 46% of families have not received rehabilitation subsidies . Enabling more autistic children in need of assistance to receive rehabilitation subsidies more easily is the key to improving the accuracy and coverage of national assistance.

There are other forms of state assistance, such as minimum living allowance, which is only enjoyed by 3.2% of families, and nursing subsidies for severely disabled people, which are only enjoyed by 6.9% of children.

Benefits of minimum living allowance and nursing subsidies for severely disabled persons

Sources of parental anxiety

The main reasons for anxiety and stress among parents of preschool children are:

1. The economic pressure is enormous.

60% of families believe that autism rehabilitation is a bottomless pit and the financial pressure it brings to the family is enormous.

2. For parents of preschool children, the child’s language skills lag is the core issue that parents are most concerned about.

Whether in China or around the world, although autism brings about a variety of problems, language impairment and language retardation are always the issues that parents are most concerned about. The results of this survey once again prove this point, and we need to consider how to correctly guide parents out of this cognitive misunderstanding.

3. The child’s progress is slow and does not meet the parents’ expectations, which causes the parents to be pessimistic about their child’s future.

Parents of preschool children do not have a deep enough understanding of autism and often have unrealistic expectations of their children's ability levels and possible futures. Once the children are limited by their own abilities and the speed of progress does not meet psychological expectations, it will cause anxiety and stress.

At the same time, because the future of children after they grow up is full of unpredictability, the existing national support system is not enough to ensure that parents can be at ease about their children's future after they grow up, which is, to a certain extent, the ultimate cause of parental anxiety.

Although the source of anxiety for young parents is largely related to financial pressure, surveys show that money is not the top priority when it comes to the help parents need most.

What kind of help do parents of preschool children need most?

Parents are very rational. What they need are more and more professional special education teachers, more kindergartens that can accept children with special needs, and acceptance of children by the surrounding communities and environment... These are also what we think are most lacking at present.

Among parents in the compulsory education group, the main reasons for their anxiety and stress are:

1. Worry that children will not be properly taken care of after you grow old or pass away.

As children grow older, parents focus not only on the current difficulties, but also on the arrangements for their children in their old age. This is also the ultimate source of anxiety for parents of autistic children.

2. As children grow older and gradually enter adolescence, new behavioral problems will emerge. At this time, because the children are older and stronger, it is not easy for parents to physically control their problematic behaviors as they do with younger children.

3. When children reach school age but are unable to attend due to ability issues or school resource issues, the pressure caused by placement difficulties is the third largest cause of anxiety.

The help that parents of compulsory education groups need most

The biggest demands of parents in the compulsory education group are significantly concentrated on matters related to their children's schooling:

1. Higher quality special education support resources, including more resource teachers and special education teachers.

2. Better acceptance and tolerance. Ordinary schools can implement inclusive education policies, and teachers, classmates and parents can better tolerate and accept children with autism.

3. Increase the amount of subsidies. At present, the policy stipulates that the age range for the payment of rehabilitation subsidies is 0-6 years old, but some economically wealthy provinces have extended this age range to 15 years old, but the subsidy age in most provinces is still 0-6 years old.

We call on relevant departments at all levels of government to make overall considerations and, in accordance with each province’s own conditions, expand the age range of rehabilitation subsidies as soon as possible if the conditions are met to help families reduce financial pressure.

After reading the survey report, Professor Guo Yanqing of Peking University Sixth Hospital said:

"As a clinician, my work is mostly in the clinic, and I come into contact with children and parents who come to seek treatment from all over the country. We see many individuals. In my impression, autism is a disease, and we let parents serve as a guide for how we diagnose and provide intervention measures.

When doctors from all over the country diagnose these children, they form a huge group. What does this group look like? Where are they located? What are their living conditions like? What are their needs and confusions? How to solve them? Clinicians are still far away from these questions.

Many of the facts presented in this report, which took three years to publish, are things I could not see, hear, or think of in the hospital.

The facts are heavy, such as the expenses that parents bear for their children's education and training, and the difficulties these families face compared to groups without disabilities, which weighs heavily on my heart.

However, from another perspective, I think this is a good thing. No matter how poor or how difficult the situation is, we must first understand them, know where they are and what they are doing... This book tells us that there is still a lot that all sectors of society need to do and can do for the autism community, and we are just getting started. "