Over the last five years in St. Petersburg, we have seen an increase in the number of young children diagnosed with Autistic Spectrum Disorders (ASD). Autism, as an official diagnosis, has more or less been accepted in Russia only in the last decade, and support programs for families with children with ASDs are quite new and weak.
We have conducted a study which aims to understand and describe the current situation which exists in St. Petersburg for families with young children with ASDs. We believe that information about parents’ views of their children’s problems and existing diagnostic and treatment programs will help us to better understand the situation. We hope that a deeper understanding of their situations and needs will help us to create more effective support programs for families.
In St. Petersburg, families of children with ASDs are included into different treatment programs which are offered by several different service providers and specialists. These treatment programs vary in both quality and degree of evidence-based support, and likely seriously impact the family’s situation.
Forty families participated in this study. All of them have young children with ASD. These parents were coming to us for the first time and had a preschool age child who met the diagnostic criteria for ASD. Some families came to us upon recommendation by professionals (doctors, psychologists, preschool teachers, etc.). Others came without any referral, trying to find answers to their questions about their child’s development or behaviour.
DATA COLLECTION STRATEGIES
Verification of diagnosis of ASD by interdisciplinary assessment
We, the researchers, a child neurologist and clinical psychologist, conducted the assessments in all forty cases. Because of the absence of biological markers for ASD, diagnosis is based on behavioural criteria according to the ICD-10 and criteria for Autism or Pervasive Developmental Disorders (PDD) according to the DSM-IV. In some cases, additional medical examinations were recommended (EEG, MRI, genetic tests, etc.). Also audiologists provided hearing assessments for all children. The RCDI scale was used for the assessment of child development.
Semi-structured interviews were carried out with the families after diagnostic sessions. We developed an interview guide to compare parental understanding of ASD in St. Petersburg with similar data published by other researchers (Whitaker, Howlin, Moore). We asked parents to share their stories and comment on their child’s past, present and future. We asked parents numerous questions, including the following: What were things like when your child was a baby? When and why did your family start to worry about your child? What kinds of professional explanations did you receive and what kinds of support programs have you participated in? What kinds of supports are needed for your child and family? What do you envision for your child’s future?
Analysis of documents
For each child, we analyzed his or her medical records, conclusions made by different professionals about his or her case, and the results of different tests and assessments performed. Our goals were to gain insight into professional opinion of these children’s conditions, as well as answer several key questions such as: When did professionals first identify developmental and behavioral problems? What diagnostic criteria did they use? What methods of assessment and evaluation were used? What classification systems were used? What type of treatment was recommended?
Severity of ASD
Severity of ASD was expressed as the child’s score on the CARS (Schopler, Reichler, Renner). The CARS is a standardized clinical observation tool that rates fifteen clinical features (social relatedness, stereotypical language, repetitious behaviors, sensory phenomena, etc.) from 1 (normal) through 4 (severely abnormal). Thus, scores on the CARS range from 15 (no signs of ASD) to 60 (severe ASD).
We conducted discourse analysis of Russian professional literature about ASD in general, diagnostic and treatment programs for preschool children who have ASD, and support programs for their families.
Differing professional discourses have resulted in a variety of services offered through state institutions and non-government organizations. We are aware that we cannot capture the full body of existing approaches and would just like to convey the general picture. Diagnostic and treatment approaches are based on the theory being used in clinical and research practice, and people using different theories tend to draw different conclusions.
Analysis of Western literature and particularly publications focused on controversy and disagreements over “scientifically approved” and “alternatively developed” approaches suggest that several discourses also exist in other countries. What are the reasons for so many different approaches and the disagreements between them? We suppose there are several reasons.
First of all, the absence of biological markers for ASD means the absence of a clear, understandable cause. Second, in spite of all “professional” and “scientific” statements, parents want to maintain hope that one day their child will be “as normal as others” and they continue to look for cures even if it is not so logical or realistic. Third, differences amongst ASD children in terms of their level of functioning, behavioral difficulties, communication challenges, etc. make it impossible to find one treatment method which works for all children with ASD. Using a certain treatment method may lead to successful results for one group of children with ASD but not for another group.
We could draw the conclusion that ideas about appropriate treatment methods are different in Russia and Western countries. Some treatment methods, such as diets and sensory integration therapy, are not widely used in Russia, and others (Holding, Facilitated Communication, etc.) are used only in certain centers. At the same time, different medical treatments are used quite often. We have also observed a variety of different medical treatment methods and serious disagreements between their followings.
Data from parent interviews suggests that most parents in our study are socially-active with good financial status (only two families provided self-assessments indicating that their economic status was “bad”) and a high level of education. On average, there was a higher level of parent education in our sample than in our database (there are more than 16,000 cases of developmental assessments in our database and nearly 50% of parents have school (college) level of education or less).
Also, there was a large prevalence of boys participating in our study (35 boys and 5 girls). The male to female ratio in persons with ASD according to population studies is 3:1. The discrepancy between the male to female ratio in our study and the ratio in population studies could be due to our study’s small size. Therefore, our sample does not fully reflect the population of children with ASD.
Additionally, the ratio of children with severe autism to children with high-functioning autism or Asperger’s Syndrome (according to CARS scores) in our sample is rather high (3:2). It could be that parents of children with more severe ASD begin to search for services earlier than parents of children with high- functioning autism. Children with more severe ASD demonstrate more clear symptoms and more severe behavioural difficulties than children with high-functioning autism.
While discussing the severity of children’s conditions, we should point out the limitations of the RCDI scale in measuring the development of children with ASD. For our study, we did not use specific tools to assess cognitive ability in young children with ASD. So, we cannot report exactly how many children in our study have IQ scores in the MR range and cannot measure the severity of their cognitive problems. We only can make the assumption that the children who had no delay in the Self-Care Domain (5 cases) and Fine Motor Domain (14 cases) and had only mild delays in Expressive Language (4 cases) and Language Comprehension (6 cases) are higher functioning than the others.
In our sample, according to retrospective parent report, the mean age at which parents first became concerned about their child’s ASD symptoms was 24 months. The mean age at which professionals suspected that the child may have ASD or diagnosed the child with ASD was 38.3 months. Therefore, on average, it took more than a year for these parents to get even a “suspicion of ASD” diagnosis.
Research by Howlin and Moore (1997) indicated that the diagnostic process could be one of the main causes of family stress and dissatisfaction and it appears to be a common problem internationally. It is very difficult for parents to wait and to be uncertain about their child’s condition. For example, Mansell and Morris (2002) found that many parents expressed frustration with social, educational and health services over trying to get an early diagnosis. Comparing our data with international studies, we believe it is possible to recognize preschool children with ASD rather early in ordinary clinical practice in St. Petersburg.
In our sample, in only 6 cases did psychiatrists establish concrete diagnoses of ASD according to ICD-10 criteria. In 7 cases, psychiatrists suspected ASD. The conclusion could be that psychiatrists have more knowledge of ASD than other professionals. But many families try to avoid visits to psychiatrists out of fear that their children will be classified as having a “psychiatric disease.” Historically in Russia, all learning disabilities (including all genetic syndromes where there is a risk of intellectual problems), behavioural problems, schizophrenia, psychoses and autism were and still are considered “psychiatric diseases.” An individual labelled as having a “psychiatric disease” could unfortunately face limited civil rights and limited possibilities for education.
All of the families in our study expressed their first worries to their doctors (pediatricians or neurologists) and later to the non-medical professionals (psychologists, speech therapists, defectologists, etc.). Preschool teachers, psychologists and speech therapists did not recognize any problems with the children and the most “popular” advice given was, “Don’t worry so early. In some months, all will be OK.” Narrow specializations of defectologists (in language, vision, hearing, learning disabilities, etc.) could be another reason as to why they did not recognize any problems.
In our sample, only in one case did the neurologist write in the medical file: “suspicion of autism.” Most professionals used terms “suspicions of autism”, “autistic tendencies” and so on. Similarly, Whitaker (2002) found that professionals tend to use non-concrete labels when they deal with young children.
All of the children in our sample, except for two, had been diagnosed with having perinatal encephalopathy or birth trauma in their first few months of life. Palchik and Shabalov (2000) found that in the last ten years, 95-98% of young babies received the same diagnosis in some districts of St. Petersburg (the situation is more or less typical of all of Russia). It is suggested that has been due to overdiagnosis and misinterpretation of the term “encephalopathy” in Russian medical society. Therefore, we do not think that these labels relate to the ASD features presented in children in our sample.
Other labels were also given to these children when their parents visited various professionals and presented concerns about their children’s communication, language, developmental or behavioural problems. In our full paper, we present a list of diagnostic categories used by different professionals. In our sample, every child had a different combination of diagnoses from several professionals.
Unfortunately, it is possible to notice that medical professionals here and elsewhere have a relatively poor level of knowledge about autism. The concept of autism is quite new for Russia, and as a result not many medical and non-professionals are familiar with it. Other discourses (for example, the neurological approach to birth trauma, local brain damage, etc.) are more popular in Russian professional society. Even amongst those knowledgeable about ASD, there are many different opinions regarding symptoms, age of appearance, cause, etc. This controversial picture makes early diagnosis of ASD very difficult.
All different professional approaches to ASD co-exist in real clinical practice in St. Petersburg. Diagnostic and treatment services for preschool children with ASD usually begin with visits to a neurologist, and later the family may visit a psychiatrist for defectological or psychodynamic sessions. In addition, the child may receive different kinds of alternative treatment.
All of the children in our sample received treatment from different professionals, and in all but one case the main component of their treatment program was “medical” (medications, neuroprotective pills or injections, electrotherapy, chiropractic or massage therapy, manual therapy, herbal treatment, acupuncture, homeopathy, etc.). Only in one case did the parents consider an educational program as the main part of their child’s treatment program.
Only nine children in our sample attended preschools. For the other thirty-one families, the inability of their children to attend preschool created additional problems. For example, mothers were no longer able to work.
Professionals and the information that they provide to parents can also influence family situation. As previously discussed, there are quite different and often controversial ideas in professional society about the causes of behavioral and developmental problems. Different professionals provide different explanations of the problems of children with ASD. It was clear in the stories that we received from parents that very different diagnoses were given to their children (brain damage, problems in blood circulation, alalia, birth trauma, wrong upbringing, etc.) and very different treatment methods were recommended to the families. Throughout the process, these families remained hopeful that their children’s problems would disappear. This controversial information and differing methods of treatment may make the emotional situation in these families worse. Every time parents have to face new interpretations of their child’s problems, the family is forced to reorganize their understanding of their child’s needs. Families are given hope about finding a “complete cure” for their child and after several weeks of treatment they are often faced with disappointment. Family members have a real need to be heard and supported, but professional society is mostly concerned with “curing” the child.
Parents of children with severe developmental delays and behavioural problems are in the most difficult situation. It is more difficult for them to manage their children and to understand the reasons for their behaviour. Some of the behavioural patterns that their children display (spitting, masturbation, licking and sucking on objects, etc.) are socially forbidden. Inability of parents to stop the “bad behaviour” may be interpreted as lack of competence. Lack of information about appropriate ways to manage the behaviour and needs of these children makes parental self-confidence more vulnerable.
According to the Antonovsky theory, there are several factors which help people overcome stressful situations, namely comprehensibility, manageability, and meaningfulness. Comprehensibility is dependent on the level of information that people have access to. Analysing the parent interviews in our study, we noticed that the majority of parents had very little information about their children’s problems and the reasons for these problems. Some of the information they received presented negative, dismal possibilities for their child’s future. Many parents found it difficult to analyse the information they received as the majority of the information was specialised and medically-oriented, and it was difficult for parents to understand how this information related to their own children.
For the most part, the types of treatment that these children received previously were not connected with daily routines. “Sick” children were prescribed mostly medicines, injections and some electrotherapy. Following these recommendations did not ensure improvements in the management of the children’s behaviours in everyday activities. None of the parents had heard about applied behavioural analysis and similar methods of coping with difficult behaviour. None of the parents had received information about the possibilities of using alternative communication methods. Research shows that using ABA helps individuals with autism to cope with self stimulations and repetitive and self-injuring behaviours, but the parents in our study were not aware of this.
One of the factors helpful in overcoming stress is the ability to reorganize one’s life and set up new goals. The majority of the families in our study were just beginning to react to the crisis and it was very difficult for them to think about and plan for the future at this stage.
All parents in our study expressed their first concerns about their children to medical professionals. Through analysing their complaints, we found that they had clearly described all three components of the autistic triad; however, different doctors made different diagnoses mostly associated with brain damage, birth trauma, etc. Medical treatment focused on curing the child by “improving brain blood circulation.” We did not find information about using these methods to treat children with ASD in Western literature.
The concept of autism is quite new for Russia, and not many medical and non-medical professionals are familiar with it. Other discourses such as the neurological approach to birth trauma, local brain damage, etc. are more popular in Russian professional society. Even amongst those knowledgeable about autism, there are many different opinions about autism regarding symptoms, age of appearance and cause. This controversial picture makes early diagnosis of ASD very difficult.
Psychiatrists are more familiar with the ASD concept, but parents tend to avoid visiting them out of fear that their children will be labeled as “psychiatric patients” and therefore restricted in terms of educational options and access to other aspects of a normal life.
It is possible to notice that there is a general lack of knowledge about ASD and treatment programs for children with ASD within professional society here. There is a wide variety of approaches to treating ASD and a great deal of controversy between the different approaches, largely due to the still unclear etiology of ASD. In Western societies, there are also serious professional debates taking place regarding the cause of and appropriate treatment methods for children with ASD.
The majority of parents in our sample were confused and upset by their child’s condition. More than 60% of the families that we interviewed had just received the ASD diagnosis for the first time. These parents were at the beginning of an emotional crisis. Their feelings were very intense, and it was difficult for these parents to talk about the future. Even those families who already suspected that their child may have an ASD experienced difficulty in accepting the diagnosis.
It is possible that the conflicting information that the parents received from various professionals could have also contributed to their emotional stress. Parents in our study demonstrated a serious need for emotional and informational support. It is often difficult for parents to sort through all of the information that they are given about autism because of the very different and sometimes contradictory theories about ASD which exist within Russian professional society. Even officially approved information from the state centres and clinics, which promise to cure autism completely, can be confusing.
We think that it is a very important right of parents to have access to current and comprehensible information about autism. We found that access to local resources for families of children with ASD is limited. Perhaps this is due to the unclear situation regarding diagnostics. With “help” from professionals, parents continue to look for medical treatment for autism, and the educational and social needs of the children are ignored. An adequate diagnosis could enable the family to get information about the needs of the child and to begin an appropriate educational program. There is a lack of trained non-medical professionals (teachers, psychologists, speech therapists, etc.). Preschools are also not ready to provide educational programs for children with severe ASD and as a result, these children are mostly kept at home. Parents tend to avoid applying for official disability status and it is the responsibility of psychiatric clinics to verify it. Because of the absence of this official label, access to social care resources is restricted.
Our research indicates that there is a great need to improve the situation for families with children with ASD. Serious education is needed for specialists working with young children with ASD as well as for parents. More attention should be paid to providing emotional support for parents. We hope that the results of this research will help us to develop new projects aimed at improving this situation.
The situation for the families of children with ASD is not so different from the situation for families of children with other disabilities. The main approach to these disabilities is still mainly a medical one. Because of that, the main resources are focused on “treating” the child or on “correcting the primary defect.” Not many programs are designed to include parents as partners in the rehabilitation process. The idea that communication is one of the most important parts of the program is still not generally accepted in our country. We think that including parental opinions and needs is very important for the development of support programs. We hope that research done in this field will help to improve the situation, develop educational programs for professionals and help parents and children.
Svyatoslav Dovbnya, Pediatric Neurologist
Tatiana Morozova, Clinical Psychologist
Firefly Children's Network
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.