Doctors for this disease still can't prescribe it, and why can't they treat it after 40 years of diagnosis?

It was an era when the domestic medical community knew very little about childhood autism, and some people even thought that there was no autism in China.

"It was a 6-year-old boy from Changchun, the child couldn't speak, he was holding a red brick in his hand, and whenever someone tried to take the brick away, he would be nervous and cry." The late Professor Tao Guotai of Nanjing Brain Hospital, a giant of children's psychiatry, once recalled to the media that in 1982, he diagnosed the first case of autism in mainland China.

In 1982, Professor Tao Guotai published a paper entitled "Diagnosis and Attribution of Infant Autism" in the Chinese Journal of Neuropsychiatry, which recorded the first 4 children with autism found and diagnosed in the mainland.

"There is never a cure for autism, and every time I face the expectant eyes of my parents, I desperately want to help them, but I can't prescribe them." In 2018, Professor Tao Guotai, who died at the age of 102, has spent his life studying autism-related topics and expressing helplessness for the diagnosis and treatment of autism, as he said in a media interview before his death.

The cause is unknown, there is no cure, rehabilitation treatment is mainly based on simple behavioral intervention, this situation has not changed so far: autism is still unable to be treated with drugs, doctors can only recommend that children receive behavioral intervention training.

Diagnosis is difficult, and parents do not want their children to be labeled as mentally ill

"The doctor gave the diagnosis, but we had no choice (to intervene as prescribed by the doctor.") A parent of a lonely child told the health community that she went to a third-class hospital in a first-tier city to hang up a child psychiatrist clinic.

The doctor's consultation time was very short, "almost looked at the child, began to open the list of examinations", the result of the consultation was suspected autism, it is recommended to go to the institution to intervene.

The doctor then gave the parents a business card of a rehabilitation institution, "not far from the hospital." But in the end, the parent did not choose to go to the institution, but planned to send the child to a normal kindergarten first.

"I think the doctor diagnoses too quickly, and I don't want to draw conclusions about my child like that." Parents say so.

This is a typical reaction of parents of children with autism, who have a sense of shame, do not want to be labeled, and lack sufficient acceptance of doctors' diagnoses and doctors' advice.

After all, the diagnosis of autism belongs to the medical category, and subsequent interventions are more like education-related, which also makes the parents of the children feel "divided".

"We were diagnosed in the hospital, but the hospital couldn't help us, so we had to go to a rehabilitation facility ourselves, which was particularly helpless and overwhelmed." Said the above parents.

"Now the state has a rule that doctors can't recommend parents to which institution to go to. When parents choose an institution, they can only collect information through various channels and make their own decisions, and there is indeed a gap in the connection from hospital to institution." Shi Xiaoling, general manager of Gulian Mango Children's Rehabilitation And Treatment Center, told the health community.

Although the perception of autism has gained considerable popularity, many parents of autism still talk about the discoloration of the disease. Some parents have always been unable to accept the reality that their children are autistic, and in repeated examinations and attempts at various methods, they have missed their children's golden stem expectations.

"Gold dry expectations are very important, and there is really not much time left for children." Liu Yaping, who is both the mother of autistic children and a practitioner of autism intervention, introduced to the health community that parents do not want their children to be labeled as mental illness, so the diagnosis rate will often be lower than the actual rate.

Source: Figureworm Creative

Liu Yaping was less than two years old when her son found that his language ability was slow, even backward, and he was reluctant to contact the outside world. Today, the child is almost 12 years old, and after institutional intervention and family rehabilitation, he has already entered the ordinary primary school and studied with normal children.

Today, 10 years after her diagnosis, Liu Yaping has also become the head of family support at dolphin Lele Child Development Center, and is a doctoral student at the Institute of Psychology of the Chinese Academy of Sciences, focusing on the emotional and cognitive development of autistic children. Books on the family rehabilitation of autistic children written by her son "Rice Grain" were circulated among the parents of children with autism.

In recent years, the incidence of neurological developmental disorders such as autism spectrum disorder (ASD) and developmental delay has gradually increased.

In 2020, the U.S. Centers for Disease Control and Prevention (CDC) released that 1 in 54 U.S. children was diagnosed with ASD (Autism Spectrum Disorder), an increase of nearly 10 percent from the previous statistic.

According to the data released by the "Report on the Development of China's Autism Education and Rehabilitation Industry III" released in 2019, the number of autistic people in the mainland exceeds 10 million, and the number of autistic children exceeds 2 million, of which the ratio of men to women is about 4:1 to 5:1. Most of the children diagnosed with autism are moderate or severe, and there are many children with mild impairments in kindergarten or school that have not been detected.

There is no simple laboratory index for the diagnosis of autism, and it is impossible to diagnose autism by means of brain waves and EEG. Zheng Yi, chief physician of the Department of Pediatrics at Beijing Anding Hospital affiliated to Capital Medical University, told the health community that autism requires comprehensive judgment, that is, multi-dimensional diagnosis, including the three core symptoms of communication disorders, stereotyped behaviors and language disorders.

Higher incidence in cities? The reality behind the 30% misdiagnosis rate

From some of the available data, it appears that the incidence of autism is higher in cities. Liu Yaping's book believes that richer interpersonal communication in rural areas gives children a broader and healthier environment to grow up, while the small unit family model in the city, as well as a relatively single social environment, brings a higher incidence of autism.

Of course, there is also another dimension of the possibility, that is, cities, especially families with higher levels of knowledge, have a higher chance of finding effective medical resources for children with suspected conditions and being diagnosed.

"There should be both of the above reasons, so primary care is very important for early screening of autism, but at present, this aspect is relatively lacking." Shi Xiaoling told the health community.

"The diagnosis of autistic children in the industry is 'I'd rather be wrong than miss'." Shi Xiaoling introduced that the treatment of children with autism basically does not involve drugs, but more with behavioral intervention and psychological intervention methods, which will not cause much damage to children. Therefore, in terms of diagnosis and intervention, the mobility is more positive. According to the data, a 30% misdiagnosis rate of autism has been clinically found.

The higher rate of misdiagnosis is due to the lack of enough doctors to screen and diagnose early. There is a shortage of pediatricians, and even more a lack of pediatric psychiatrists. In 2019, data published by The Lancet showed that the number of pediatric psychiatry specialists in mainland China did not exceed 500. Not only that, most of the high-quality pediatric psychiatrists in China are indeed concentrated in the top three hospitals in first- and second-tier cities.

Some children's psychiatry diagnosis and treatment in cities such as Beijing, Shanghai, Guangzhou, and other cities on the mainland have reached the international level, with various international standards for diagnosis and treatment, the latest drugs, and the latest treatment methods. However, in the sinking medical resources, even in some provincial-level cities, there is not a real specialist psychiatrist or child psychiatrist.

"Unlike other diseases, children's mental illness has its own special difficulty in diagnosing, and children are too young to clearly express the condition. If you follow the normal procedure, half an hour to see a child, the time is more appropriate." Xie Bin, secretary of the party committee of the Shanghai Mental Health Center and director of the Shanghai Municipal Center for Disease Prevention and Control Mental Health Branch, told the health community that for patients with small mental disorders, if the symptoms are not obvious, it may even take 1 hour or more to communicate and observe.

Compared with other departments, in addition to paying attention to the patient's symptoms, pediatric psychiatrists should also pay attention to why the patient has symptoms, what factors affect the symptoms, and what the symptoms affect. For example, for a child with autism, it is necessary to understand various information related to the child's mental activities, such as the mother's pregnancy and the birth of the child, the family structure, the parents' parenting style, etc., which requires care and patience, and takes up a lot of time from the doctor.

However, due to the lack of doctors and the high concentration of medical resources for childhood mental illness, child psychiatrists often have to face a very dense number of patients.

"There are too many patients, and although I really want to spend half an hour or more with a child according to the normal procedure, it is actually very difficult to do so." A child psychiatrist at a tertiary hospital in Beijing told the health community that it is still necessary to increase the screening efforts at the grass-roots level, and the children are concentrated in the top hospitals, "the ability of hospitals and doctors to undertake is really limited."

At present, the situation has changed, Shi Xiaoling took Sichuan as an example, and provincial hospitals such as women and children in the province will conduct designated training for autism in primary medical and health institutions every year. She said that it is best for provincial medical institutions to take the lead in doing such things, and private rehabilitation institutions are involved in the model of medical associations.

"In fact, children with autism can show suspected symptoms clinically when they are more than 6 months old, and doctors can make preliminary screening if they have more experience." Shi Xiaoling suggested that we can promote literacy education in grass-roots medical institutions from the government level. She believes that the sinking of medical resources and graded diagnosis and treatment are the trend, "if the grass-roots community doctors still mainly do the height and weight measurement of children, it is actually far from enough."

Therefore, she proposed that the expertise of grass-roots doctors should be expanded, such as being able to train children in audio-visual aspects, carrying out end-of-end training for children with suspected autism, and the overall recovery in the later stage will be beneficial, and even the incidence of autism will be reduced.

In view of the situation that the specialized departments of children's mental illness are mainly concentrated in the top three hospitals in first-tier cities, Xie Bin suggested that a network of children's psychiatric medical services should be established, so that children with mental illness in underdeveloped areas can get treatment from experts in large hospitals through the network.

Very few, where did the doctors in this department come from

According to a 2019 report by The Health Times, in the whole of Zhejiang, only Ningbo Kangning Hospital has a full-time team of children and adolescent psychiatrists, and there are only 5 people.

According to the health community to Wenzhou Corning Hospital Group Secretary Wang Jian, this data is no longer accurate, corning hospital children's psychiatrists alone more than 5 people. Wang Jian said that in the past two years, the development has been faster, and the number of doctors engaged in pediatric psychiatry treatment has greatly increased.

Wang Jian said that if the understanding of the two words "full-time" is different, the statistical caliber of child psychiatrists will be different, and some doctors who see children's outpatient clinics also diagnose and treat adult patients, "for example, director Miyamoto of our hospital, he has two days a week to see children's clinics, and three days to see adult clinics, so the data is not very good statistics."

Xie Bin suggested that if the status quo is to be changed, the remuneration of existing child psychiatrists should first be improved; second, a long-term mechanism for standardized training of child psychiatrists should be established.

"60% to 70% of children with ADHD can recover after puberty after intervention, and children with autism can also enter kindergartens and primary schools normally after early intervention and integrate into normal life." Chen Yixin, chief physician of the Children's Mental Health Research Center of Nanjing Brain Hospital and vice chairman of the Child Mental Health Professional Committee of the China Mental Health Association, stressed to the health community that after corrective training and counseling by professional doctors for children with different degrees of mental illness, the healthy growth of children can be promoted and the incidence of recurrence and adulthood can be reduced.

The Nanjing Brain Hospital, where Professor Tao Guotai was located, developed pediatric psychiatry earlier in China. In 1984, the Nanjing Child Mental Health Research Center was established, which was the first professional institution of child mental health in mainland China. In 1994, the Nanjing Children's Mental Health Research Center was merged into Nanjing Brain Hospital.

"At present, the Child Mental Health Research Center of Nanjing Brain Hospital has nearly 200 outpatient visits per day." Chen Yixin introduced. At present, there are only 14 full-time children's psychiatrists in Nanjing, concentrated in Nanjing Brain Hospital and Nanjing Children's Hospital. Due to the lack of full-time child psychiatrists in other cities in the province and surrounding provinces, many parents will visit Nanjing for treatment.

There are fewer full-time pediatric psychiatrists, and there is a shortage of dedicated psychiatric children's wards. Chen Yixin said that in the past, only the Nanjing Child Mental Health Research Center in Jiangsu Province and even the whole country had a child psychiatric inpatient ward. The Nanjing Child Mental Health Research Center has only 40 children's beds, which are full all year round, and now a new ward has been opened.

"Children with autism, on the other hand, are not in the hospitalization at all, first of all, there are no drugs and prescriptions, and there are not enough beds." Chen Yixin said that there are now less than 20 graduate supervisors who can recruit graduate supervisors in the field of child psychiatry, and the number of graduates each year will certainly not be large.

In March 2021, the National Health Commission and nine other ministries and commissions jointly issued the Notice on Printing and Distributing the Key Tasks of the Pilot Construction of the National Social Psychological Service System in 2021. The "Notice" proposes that 40% of general hospitals above the second level open psychiatric (psychological) outpatient clinics.

That's a doubling of that number compared to 2020. According to the latest data released by the National Health Commission, the number of medical and health institutions in public hospitals above the second level in the mainland is 11,885, which means that nearly 5,000 hospitals across the country need to increase mental (psychological) outpatient clinics.

Under such policy advocacy, the number of pediatricians and pediatric protection doctors who come to Nanjing Brain Hospital to participate in refresher courses has also increased year by year. After their further education, they will return to the hospital to open a child development and behavior clinic, a mental health clinic, etc.

"In order to meet the needs, we now offer two refresher courses a year, and we have carried out 43 refresher courses in children's psychiatry, each of which will involve more than 10 doctors." Chen Yixin believes that the status quo needs to be changed and must be started immediately.

Sources | the health community

Written by | Shen Jia