A pediatrician's advice on autism diagnosis and intervention

Author: Song Chao Department of Developmental and Behavioral Pediatrics, Children's Hospital, Zhejiang University School of Medicine

Autism is a common neurodevelopmental disorder in children. In medicine, there is a more professional term called "autism spectrum disorder (ASD)". "Spectrum disorder", as the name suggests, means that its manifestations are varied, ranging from mild to severe, but the core issues of ASD are mainly social interaction disorders and repetitive stereotyped behaviors and narrow interests. Many adults like to joke that they are "autistic". The so-called autism in life scenes is more like a popular word called "emo", which means depression and loneliness. This is not the same thing as "autism" in our medical field.

I was originally a pediatrician. Two years ago, I changed my profession and started working in developmental behavioral pediatrics. So far, I have come into contact with at least thousands of autistic children and families. In my daily clinics, I see all kinds of parents and children. Their current situations, inner worries and expectations often make me think: Why are there so many difficulties in early diagnosis and early intervention of autism?

Early intervention is beneficial for children with autism, but this has an important premise, which is to find out that the child has difficulties or is unusual early. In reality, early detection and early intervention face great challenges. There are many reasons. One of them is that the majority of general pediatricians and grassroots child health workers, like the general public, have limited knowledge of neurodevelopmental disorders to which ASD belongs. For example, when I was on outpatient duty last week, I met a child from a rural area in the southwest. His mother worked in Ningbo. She brought the child to my clinic to see the problem of "language lag". After asking about the medical history and observing the behavior, I judged that the child was a typical ASD. His language was indeed backward, but he showed more obvious social difficulties and repetitive stereotyped behaviors. The child is more than 4 years old, but he has never seen a doctor for behavioral problems, and no doctor has ever said that the child has autism. But the mother always thinks that there is a problem with the child's lack of speech, so she brought the child from her rural hometown to Zhejiang, hoping that the doctor can help the child.

With economic development and technological progress, children's developmental and behavioral problems have gradually attracted widespread attention. In particular, with the development of developmental and behavioral pediatrics, child psychiatry and other disciplines, specialists' understanding of ASD has gradually increased. However, in the face of such a high incidence, it is obviously unrealistic for specialists to complete the diagnosis and treatment alone. Before I transferred to the developmental and behavioral specialty, I, like the majority of general pediatricians and grassroots child health care workers, did not have enough understanding of the neurodevelopmental disorders to which ASD belongs. This may be related to current medical education. In the past, common and frequently occurring diseases in children were mainly infectious diseases, such as pneumonia and enteritis. During the stages of studying in medical schools and continuing education after graduation, the knowledge structure of most pediatric general practitioners is still limited to the more traditional medical knowledge system, which is not conducive to the early detection of children with autism, and thus directly leads to the inability to carry out early intervention.

Just imagine that the probability of any child not seeing a doctor before the age of 3 is extremely low. There will always be fever, cough, and diarrhea. They will always go to maternal and child health care hospitals or community health service centers to measure height and weight, get vaccinated, etc. If these children can be detected with some abnormal behaviors when seeking medical treatment as above, and receive effective advice and referrals, then the early intervention of many autistic children will be very different. In 2021, the "Early Screening and Referral Research Report on Children with Autism Spectrum Disorder in China" jointly initiated and written by Shenzhen One Foundation Charity Foundation, China Parent Organization Network, Watch Parent Organization Network, Xinmeng Network, Autism South China Network, Autism Northwest Network, and Autism Southwest Network mentioned that nearly half of the parents take more than one year from the discovery of their children's abnormal behavior to the diagnosis.

Therefore, it is particularly important to strengthen the popularization of ASD-related knowledge among primary child health doctors and all pediatricians. It is also recommended to incorporate ASD knowledge into higher education and post-graduate continuing education in medical schools, and also into the syllabus of assistant professional physicians, physician practice examinations, nurse qualification examinations and various professional title examinations.

After screening and diagnosis of autism, the next step is referral and intervention, which is often the most worrying part for parents, because the number and quality of rehabilitation service agencies and therapists determine whether children with autism can achieve adequate early intervention.

Behavioral intervention in natural scenes such as the family or in rehabilitation training institutions is currently a recognized ASD support program. We usually recommend parents to go to the local Disabled Persons' Federation to inquire about rehabilitation institutions. Rehabilitation institutions recognized by the Disabled Persons' Federation are often relatively formal, but according to daily observations, in some economically underdeveloped areas, the number of rehabilitation institutions cannot meet the needs of local autistic children. It is also a parent from a county in a neighboring province who I met in the recent outpatient clinic. She brought her 6-year-old child to my clinic to inquire about whether there are any new drugs and treatments for ASD. This child was diagnosed with autism in our hospital when he was about 3 years old. At that time, the doctor suggested that he return to the local area for rehabilitation training. After less than half a year of training in a local rehabilitation institution, the teacher of the institution said that the child had made a lot of progress and could stop training. He would go directly to a special school in the future. The parents also felt that the child had made progress, so they followed the teacher's advice and stopped institutional training. Until this visit again, I initially observed that the child's ability was not bad. If he could continue to undergo rehabilitation training in the past few years, he might have the opportunity to go to a general school for inclusive education. It's just that there are not so many ifs in many things, so I felt very complicated at the time.

The rehabilitation group is mainly composed of graduates of rehabilitation and special education majors. Their levels are also uneven. Most people have not systematically learned autism intervention techniques, and have even fewer opportunities to practice. The content of ASD rehabilitation training is quite different from what is learned in school, which means that more resources need to be invested in training professional rehabilitation teachers, and this part of the investment is basically borne by the institutions themselves, which is also an important reason why the fees charged by rehabilitation training institutions are generally high. Some children are born in first- and second-tier cities such as Beijing, Shanghai, Guangzhou and Shenzhen with abundant rehabilitation resources, and some children are born in counties, towns and villages with few rehabilitation resources. However, the incidence of ASD will not change significantly due to different cities and regions. We also need to see that those ASD groups living in areas with scarce medical and rehabilitation resources will face greater difficulties. The rehabilitation cycle of ASD is relatively long. There are also many parents and children from other places who rent houses in first-tier cities for a long time for rehabilitation training, but this is based on the premise that the family's economic conditions are good enough, otherwise it is difficult to support such expenses.

Finally, I would like to talk about the public's understanding of autism. In our clinical work, we have encountered too many parents who would say "the elders said, the neighbors said, the child has no problem...etc." This also reflects that the public's understanding of ASD is still insufficient, so it is also important to do a good job of popularizing science to the public. Last year and this year, I tried to use my personal connections to go to two schools in Shangrao City, Jiangxi Province (one of which is a rural school) to give lectures to parents and teachers. Each lecture lasted 40-60 minutes, but after the lecture, the teachers and parents would surround me for more than an hour of consultation, which shows that the local public is eager and expectant for similar information.

The above is what I shared with you about what I have seen and felt in the pediatric clinic over the past two years. In the future, I will do my best to visit more schools and villages. At the same time, I also hope that more people in the society can pay attention to autistic children and their families in areas where medical and rehabilitation resources are relatively scarce, "Let love come, let obstacles go."