|Year : 2017 | Volume
| Issue : 2 | Page : 125-130
Neurodevelopmental planning during early school years for children with “Autistic” behavior (practice guidelines)
Mepurathu Chacko Mathew
Department of Developmental Paediatrics and Child Neurology, MOSC Medical College, Ernakulam, Kerala, India
|Date of Web Publication||18-May-2017|
Mepurathu Chacko Mathew
Department of Developmental Paediatrics and Child Neurology, MOSC Medical College, Kolenchery, Ernakulam - 682 311, Kerala
Source of Support: None, Conflict of Interest: None
The planning process while considering initiation of nonformal or formal education in children with autistic behavior should take into consideration the extent of the autistic profile of a child, comorbidities, response to therapy, language and learning progress a child makes, and the adaptations which a teacher is willing to make in the classroom. The schooling options for such children include regular schools with a special learning environment, special schools, and the open schooling system. An early learning program that bridges home and school can help children adapt to a school program and also provides periodic supplementation and support for their learning process. The involvement of school teachers, parents and siblings is an important contribution to the learning process.
Keywords: Autism, behavior screening autism, learning disability, neurodevelopmental planning, special school
|How to cite this article:|
Mathew MC. Neurodevelopmental planning during early school years for children with “Autistic” behavior (practice guidelines). Curr Med Issues 2017;15:125-30
|How to cite this URL:|
Mathew MC. Neurodevelopmental planning during early school years for children with “Autistic” behavior (practice guidelines). Curr Med Issues [serial online] 2017 [cited 2020 Jul 7];15:125-30. Available from: http://www.cmijournal.org/text.asp?2017/15/2/125/206524
| Introduction|| |
All children are expected to begin schooling by 6 years. Most children begin at a preschool for nonformal learning from the age of 3 years. However, children with an autistic phenotype have several adjustments to make, when they begin the preschool education. The “school readiness of a child” is a determining factor in making school acceptable and educationally relevant to behaviorally autistic child. If a child has developmental dysfunction in the domains of communication, behavior, learning and social skills, which is what happens when a child has an autistic phenotype, the school entry and learning experience can be stressful and the learning process noncompatible with the level of abilities of a child. One of the crucial factors, which parents consider, when a child is approaching preschool age is the options for beginning nonformal or formal education! This planning process takes into consideration the extent of the autistic profile of a child, comorbidities, response to therapy, language and learning progress a child makes, and the adaptations which a teacher is willing to make in the classroom for such a child.
| Neurodevelopmental Monitoring Process|| |
The following screening and monitoring processes of are useful for school-going children with autistic behavior.
Screening preschool skills
All children, who are behaviorally different need screening for their learning interest, attention, social intent, play intent, communication intent, group participation, compliance, nonverbal skills, language comprehension, learning intent, visual motor skills, visual spatial skills, prewriting skills, penmanship, danger awareness, responses to interactive efforts, etc., before school entry. I have often used a checklist consisting of these and some other behavioral patterns, which can be observed and recorded across a 5-point scoring system. A weekly record of these would help in gauging the responsiveness of a child to a learning environment.
A comprehensive behavior checklist standardized or observational in function can be used. I have preferred to record the behavioral markers in a 57-point observational record sheet, all the behaviors that are manifest in a child by watching a child directly during play or a video recording or by interviewing parents. The behaviors are recorded as regularly present or occasionally present or not present. A child's behavior of preferring to be alone in a social setting or while being with peers, during travel, in a restaurant or a mall or public places can interfere with classroom learning. What a child does at bedtime, bath time, meal time, or play time, or when angry or stressed, etc., are also equally important to understand the attitude of a child to learning. Before school entry and during the initial weeks at school, the use of a checklist is a good way to monitor the evolving behavior profile of a child. All behaviors have a dynamic profile influenced by the mood of a child, environmental factors, and the cognitive demands on a child to the opportunities of learning and socialization. When a child is mal-adjusted behaviorally, it is an impediment to child's learning prospects.
In a screening exercise of 221 children with an autistic phenotype between 3 and 9 years of age, 72% had some form of sleep-related difficulties, such as sleep latency disorder, sleep arousal, sleep-wake rhythm dysfunction, parasomnia, obstructive apnea, and microsleep during day or sleep deprived drowsiness. Sleep deprivation impairs attention, social skills, communications skills, and alertness to events in the environment. A sleep diary is the best form of keeping a track on the sleep hygiene practices and sleep-wake pattern of a child. A sleep monitoring protocol, which we use regularly is simple and self-explanatory for parental use. A weekly review of the sleep pattern provides wealth of information about the nocturnal events and sleep debt. A preschool child getting up from sleep, screaming or frightened and refusing to be consoled and taking a long time to go back to sleep might be suffering from a frontal or temporal lobe seizure activity! It is a good practice for parents to record such scenes. A video recording would aid in distinguishing seizure activity from night terror or nocturnal episodes of a headache, etc.
We rely on the diet information recorded by parents for 1 week to calculate the energy uptake, sources of carbohydrates and protein and observe if food with additives, preservatives, or stimulant containing beverages or chocolates are consumed in excess. The main advantage of a diet record is to pick up any change in behavior when new food items are introduced. There is sufficient evidence to believe that some children do not tolerate wheat-, food-, or milk-based products. Those children who have oral hypersensitivity or hypophagia might avoid fruits and vegetables, which could impair the bowel habits even more. During the review of symptoms of 55 school-going children for which parents sought help, 32% of them had habitual constipation without any evidence of congenital megacolon or spina bifida occulta. Most children with autistic phenotype have repetitive body mannerisms, hyperactivity, motoric stereotypies such as rocking, jumping, and running because of which they have increased the insensible loss of fluid from the body. Most parents do not monitor the fluid intake to compensate for this loss because of which children suffer even more due to constipation! The replacement diet therapy proposed by other biological food supplements or detoxification approach might have some benefit in some, which only suggests that there is a need to individualize the diet management according to the need and revealed by the findings of investigations. I know instances of five school-going children, whose parents were willing to add yogurt to the daily diet, who became more attentive in the classroom suddenly! Was it a probiotic effect from Lactobacillus! In another observation of 21 children, I noticed that with four hourly feeds there was an objective reduction in their hyperactivity! Was it because they were no more hungry or partially relieved of gastritis! There are many diet related anecdotal observations in literature, which only suggests that an individualized approach would be a way forward. As IgE levels are monitored at least three times in the cohort of school-going children who come to us for regular follow-up, I am surprised by the gross fluctuations in its value. There might be an immunogenic factor triggered by some form of allergic stimuli, all of which cannot be attributable to food alone!
All school-going children have a transitional stress when they join school. Any toddler who is showing a behavior phenotype of autistic profile needs to join a playgroup to get ready to adapt to a new social environment. Children who had this priming experience seem to adjust better when they join the school. There is a need to monitor the home environment of play patterns, feeding times, social times, sleep hygiene, leisure time activities, communication style, sibling interactions, macro environment, instruction-correction-reinforcement process, preferences for play, social skills, activity profile, parent-child interaction process, etc. The protocol we use containing these and more dimensions to monitor home environment, which parents use to fill in the data, supplement the information available from the video-recording of home-based activities. As a lot of the wakeful period of a school-going child is spent at home, it is necessary to monitor the events taking place at home to plan for remedial support for parents.
All the above five monitoring processes using user-friendly protocols have become dependable sources of information for us for monitoring school-going autistic children. Samples of these forms can be made available to the readers for their use on request.
| Class room Environment|| |
This is a challenging question for parents, professionals, and teachers. How would a child adjust to a classroom setting is an open-ended question. This starts with identifying the behavior profile of a child. From my experience, we have developed a preliminary screening tool to make a tentative decision about who is likely to adjust to a regular classroom. During the five domains of neurodevelopmental monitoring process described in the previous section, there is usually a natural grouping of children into five subgroups:
- Children who have some social and language skills
- Children who are active in motoric activities
- Children who are attentive to a modified learning process
- Children who spend most of their time in their own preferred activities
- Children who have various comorbidities because of which they need individualized learning environment.
This grouping is often dynamic as children for reasons unknown to us would move from one category to the other depending on some intrinsic and extrinsic factors. However, the first three categories of children mentioned above are normally considered eligible to join a classroom environment. I have found from experience that most children in any of the three groups adjust better in a Montessori form of learning atmosphere. As such facilities are not always available, I have often recommended to parents to try a school with a lesser number of children in a classroom where there is a provision to support children who have special learning needs. Among the three groups mentioned, children who have some social and language skills adjust reasonably well to a regular classroom if the teachers are inclusive in their approach. During the last 4 years, I have had an experience of being in touch with seven families whose children belong to one of the three categories mentioned above. They seem to adjust reasonably well to a regular classroom.
However, children who belong to the last two categories are different. They are the ones who might have prolonged need of speech therapy, behavior therapy, learning support, or individualized learning plan. Most regular schools do not have provisions for this. The special schools are few in number even in the urban settings. Often children in these two groups spend their time in therapy programs and do not receive regular and sustained learning support. Even the learning support provided is in an individual setting, which is not sufficient for the expansion of their social skills. It has taken a lot of persuasion for couple of schools near to where I work now, to offer such children 2 days of classroom learning opportunity, which has worked only for two children out of nine children who were in this category during the last 2 years.
I have access two checklists, which we use to monitor the progress children make in the classroom one which is filled by the teacher and the other by one of the parents. A monthly audit of the performance of the child is a valuable exercise to monitor the developmental trajectory of a child, once he/she is in a regular classroom. The joint discussion between parents, professionals, and teachers is a useful resource for planning of the learning curriculum.
During a preliminary interview with parents of 21 children in the age group between 6 and 10 years, who were at a regular school for at least 2 years, nine of them continued their learning journey with the support of a modified curriculum in some subjects by keeping abreast with the rest of the children in their performance appraisals in some subjects. The schools modified the examination pattern for them to use multiple choice answers rather than descriptive answers. The individual learning support was provided in the classroom and not in a remedial setting, as schools did not have that facility. All the nine had some comorbidity such as hyperactivity, attention deficit, sleep latency dysfunction, and electrical rhythm dysfunction. The behavior profile of these children did show some indications of recovery in social skills, communication, and reciprocal behavior. All of them had scored well in their intellectual functioning with some advanced skills in the domain of multiple intelligences.
However, the remaining 12 children did not make adequate progress and needed attention for occupational or behavioral or speech therapy. Although they are still at school attending only for part of the day or 4 days in a week, it is clear now that they would need more individualized learning plan in a remedial setting. We are looking into the defining characteristics about who would adjust in a classroom when they are autistic behaviorally and have many compounding comorbidities.
Our preliminary observation is that the autistic spectrum rating they obtain in any standard autism rating scales, presence of comorbidities and disorganized home environment have an influence on the school performance and continuity at school. When schools used music, dance, movement therapy, drama, play-based learning process, experiences in learning through outings, nature exploration and creative visual art forms such as drawing, painting, the performance of autistic children improved.
| Alternate Schooling Options|| |
There are at least two alternate schooling options available for children who have an autistic behavior profile.
The first is the special learning environment in a regular school or in a special school. In a regular school, it is a concurrent educational plan, when a child is integrated to a regular classroom along with remedial education support through a resource room equipped with teachers trained in special education to advance the residual abilities of children. The Sarva Shiksha Abhiyan programme, which is implemented in many schools provide the support for this model.
In a special school, children are integrated into small group settings where children with different developmental needs are brought together on the basis of their commonality in learning and performance levels. In my experience, this has become more popular in the recent years as such schools integrate learning support with therapy, sports and vocational pursuit of interests of children.
It is often a difficult choice for parents to find the ideal schooling environment. Therefore, a second option has become a viable model through the national open school. The national open school with its flexible curriculum designed to adjust to the needs of differently abled children is easily accessible as many schools register children to learn through this system. Some schools offer formal training for children to meet their needs and style of learning. It has also a stream of vocational learning, which has the prospect of life skill development, which would lead children to an employable level. Having had some experience through interacting with parents and schools on the open school system, I feel that it is going to be a resource of immense promise for children.
Between the two options available, a choice is often difficult. It has been our practice to encourage parents to start with a regular school experience for their children and review the adaptability of children every 6 months in consultation with the teachers and peers in the class. A formal academic learning to enhance their capacity has to be made available to every child, as even with the best of formal screening, we might not be sure at school entry as to which children are likely to respond well to the learning opportunity. When the school, parents, and child work collaboratively with the support of the professional team of a Child Development Centre or its equivalent, there is some predictability about the learning outcome. The diversity in the outcome of learning prospects of children, who initially looked similar in their level of abilities, has often surprised us. It reinforces the notion that most children would unfold their residual skills gradually.
| Bridge between Home and School|| |
Early learning center
One experiment that I have been involved in the last 4 years is in setting up an early learning center attached to the Child Development Centre. It has been an exploratory initiative to look into the benefits of offering an informal classroom environment for children with autistic behavior before 6 years of age for 3 months. During that season of 3 months (of 4 days in a week), children with autistic behavior are welcomed into a group learning experience. Usually, the group would consist of six children each with some form of neurodevelopmental needs. The 5 h/day activity would consist of group play, individual learning and therapy sessions, music, outdoor play, supervised leisure time activities, and practicing daily living skills. One of the parents or regular caregivers is present throughout the program on every day. A psychologist, speech therapist, and occupational therapist form the team that acts as lead providers of the professional input.
During a review of this program since its inception 2 years back, with six batches having completed this bridging exercise between home and school, we have received feedback from ten families about the satisfactory adjustment of children to the regular classroom. Eight return to the Child Development Centre regularly for advanced learning support. The feedback from schools of these eight children is objectively satisfying in terms of their adjustment and competency to cope with the demands of a regular classroom.
Parents have in their review of this program commented about the benefits of this program. They were introduced to the value of a structured learning activity, which they practice at home on the remaining 3 days of the week when they do not come to the early learning center. The opportunity to witness and learn from interactions with professionals and other parents reinforced the learning rhythm. This experience provided them an opportunity to value the integration of therapy and learning program in an effective way.
The logistics of running such a program can be demanding and economically not viable initially. However, every child has a right to education according to the educational policy in our country. This ought to compel us to innovate creatively for helping children to develop skills that are necessary to function reasonably well in a classroom environment.
This experience has prompted us to offer a play group activity once a week for children who are likely to join the early learning center later. We have seen this preparatory group activity as a good step to prime children for 4 days a week nonformal learning experience at the early learning center later. We have now begun to explore the prospect of training volunteers from the community, mainly parents who have time at their disposal to run play groups in the community. The Anganwadi programme that exists in every community for preschool children is a good setting to conduct an organized weekly play group where the able and the differently able children can join together for advancing their preschool skills.
There are regular playgroups or prekindergarten environments available in many places. Even such an environment would offer some experiences which an early learning center can offer.
Learning support center
Another development in our department that is still in an early stage of experimentation is the evolution of a learning support center. Families who come from distant places now prefer to come for 5 days at a stretch to have a detailed evaluation of their children and an introduction to the learning journey of their children. They spend the daytime in the hall of residence which is equipped with essential facilities to observe, interact, and introduce learning experiences to children by a team of developmental psychologist, occupational therapist, and language therapist.
This has opened another doorway for advanced enabling for parents and to create a child-friendly environment for the learning pursuit of their children at home. Although it is ideal for parents to stay in the hall of residence to make their experience more complete, we are taking time to study the lasting benefits of this before we embark on extending this to a residential program. The parents who have returned to avail this service a second time remind us of its greater potential benefit, if it is residential.
I have a growing conviction that it is not the inability often, which is responsible for many children to fail in their adaptation to the classroom, but the lack of preparation we do to prime them into this experience. Considering that most children who have an autistic behavior have many adjustment challenges or comorbidities, it is all the more important for them to have an in-between experience in a nonformal educational environment.
| Transition in the Autistic Behavior|| |
It is during the early schooling years, we can often come across the changes in the behavior profile of children. There are three common patterns. One group of children respond to their environment of learning with progressive response to input in communication, language, and social input with indications of special skills such as ability in music, visual art, and creative pursuits. It is children from this group who would stay in the borderline of autistic spectrum or even move out it. Some would show signs of high functioning autistic features such as features of Asperger's syndrome. Another group of children makes progress in one or two domains and stays dependent on special resources and learning support. Their learning prospects do not follow a predictable trajectory. A third group would stay trapped in comorbidities and challenges in adjusting to the learning input even when a specially designed curriculum of learning in a resource room setting is offered to them. From our experience, we notice that 15 children belonging to the age groups of 6 and 9 were evenly distributed in these three groups at the end of 3 years of follow-up.
| Involvement of Parents, Siblings, and Teachers during Early School Years|| |
Although every transition is usually difficult for children with autistic behavior, it is the school entry, which is most stressful for most children. We have a few structured orientation sessions with parents and siblings to prepare them to anticipate and adjust to the challenges ahead. Parents often would have exposure to the experiences of other parents and an introduction to the several steps of preparation to prime a child to join school. The practical details such as having a regular bedtime to help a child to get up in the morning, getting used to wearing a uniform, carrying a bag to school, having to attend to daily care activities at school, and finding a few friends to feel comfortable in a new environment, are central to this orientation process. We use the video recording of activities at home and the home environment to base our discussion to help parents in preparing their child for school entry.
The involvement of older siblings can be contributory in this process. When school-going older siblings have been sympathetic to the special needs of their brother or sister, it is often easier for an autistic child. We have encouraged the older siblings to be involved in helping a child to get ready for school and be in touch with the child during the school hours if the sibling is also at the same school. The feedback, which the sibling brings about the way the child is adjusting, is valuable, in monitoring the adjustment process of a child.
Often teachers need an introduction to the behavior patterns of a child when he/she joins a classroom. Most teachers need help in understanding the communication pattern, behavioral traits, and the personal learning style of an autistic child. Some autistic children at school entry resent the classroom and the outdoor activities, and some others become disruptive initially disturbing the regular teaching-learning environment in the classroom. We have a support system for teachers by being in touch with them as often as it is needed. We receive video recording of the classroom activity of some autistic children. We encourage teachers to use checklists of behavior and performance. This audit process is vital for teachers to feel supported.
The school entry process is a composite preparation process. One-way we have facilitated this for some children is by asking parents to take a child for several days to the school campus to play in the school campus and watch other children arrive at school and leave school. Some children are encouraged to visit the school during lunch recess or outdoor paly time of children to have an introduction to the experience awaiting them. Some parents who were willing to take leave from their work to be fully present to their child during this transition period have mentioned that it helped to minimize the transition stress on the child and themselves.
| Pharmacotherapy during School Entry|| |
Some children are on some drugs and teachers ought to take responsibility to dispense the drugs to children and observe if a child has any adverse response to them. It is necessary for the professionals to review how a child is adjusting to the medications if mood stabilizers or anti-depressants or antipsychotics or stimulants are used. Some children would need adjustment of doses. We try to calibrate these by getting feedback from teachers and parents. With the permission of parents, we encourage a 5-day week drug regimen when anti-psychotics or stimulants are used. It is necessary to plan this in tune with the classroom rhythm and the timetable of activities. Some children are sleepy at some time of the day when anti-convulsants or anti-psychotics are used. This needs to be looked into creatively by modifying the dose and time of administration of the drugs.
There is a delicate balance between managing the comorbidities and optimizing the learning prospects of an autistic child. Most teachers are comfortable to adjust to tolerable level of overactivity or mild disruptive behavior of an autistic child, in which case there is no need to rush into use drugs to reduce these symptoms. We have found environmental support an equally effective strategy to cope with some special situations of such children.
| Conclusion|| |
Most children with an autistic profile can be in a mainstream educational setting provided their needs are identified, and a composite support system is in place. There is a need to be creative and innovative in responding to the needs of such children.
I know of a school where there is a music session in the classroom at the beginning of the day to help an autistic child to begin the day cheerful. In another school, the teachers assigned two classmates to be companions to an autistic child, which seems to have helped the child emotionally and socially. In another instance, a parent was allowed to be in the classroom for 3 months till the child was ready to be independent.
There are a variety of ways an autistic child can be integrated into a regular classroom. There are situations when special schooling or learning through the national open school system or a highly integrated approach through therapy and environmental modifications are needed. It calls for a sympathetic and determined effort from educationalists, parents, and professionals so that every child with an autistic profile is also given a chance to learn in his/her way.
My former colleagues, Suchitra, Annie, Vijayalakshmi, Sneha, Lydia, Reeba, Chinthu, and present colleagues, Susan, Rhenu, Anitta, Annam and Amala who helped me understand the different dimensions and domains of the needs of autistic children when they start their schooling. I am grateful to parents who shared information about their children freely and teachers who showed considerable patience to adapt and innovate. Thanks to many schools in Tamil Nadu, particularly in Chennai and Vellore where some of the experiments mentioned in this article were first introduced. My thanks to the filmmaker, Mr. Mani Ratnam, who produced the film, Anjali, in 1989, based on his experiences at ASHIRVAD Child Development Centre, Chennai, Tamil Nadu, India where I was working then, in which he portrayed the helplessness of a child with developmental disability because of which, many schools came forward to welcome children into the mainstream educational environment. I have had good professional mentors who helped me to be a learner by observing and discerning, to whom I owe a lot for the growing clarity in my thinking about school-related matters of children with neurodevelopmental needs.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
About the author:
M.C. Mathew, M.D.(Paed); PhD (Neuro); D.N.B (MCH); D.C.B.R (Lon); D.P.H; D.A.D.R; D.F.D.R is a Developmental Neurologist and was the founder professor and head of the department of Developmental Pediatrics at Christian Medical College, Vellore. This was the first department of its kind in India for the specialized treatment of developmental disorders in children. He was involved in developing a multidisciplinary team to evaluate, monitor and treat children with autism and other developmental disorders. He currently serves as Professor in Developmental Paediatrics and Child Neurology at MOSC Medical College, Kolenchery, Ernakulum, Kerala.