|Year : 2017 | Volume
| Issue : 1 | Page : 38-44
Toddlers with “autistic” symptoms: Professional practice guidelines and parenting challenges
Mepurathu Chacko Mathew
Department of Developmental Paediatrics and Child Neurology, MOSC Medical College, Ernakulam, Kerala, India
|Date of Web Publication||17-Feb-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
A toddler is suspected to have autism when the child shows atypical behavior mannerisms, delay in acquiring language skills, avoidance of normal learning process, or atypical motoric mannerisms. The evaluation and management of such a child will require a careful step-by-step approach starting with the observation of the child, identifying possible causative pathways, management of parental dilemmas, investigations, and integrative therapy and support. The evaluation and follow-up of a child with autism is an unfolding process that takes years of a holistic approach which integrates the services of experts from multiple disciplines is essential. The therapy of a child with autism has to be tailored to the specific needs of the child as every child responds differently to therapy. The involvement of the parents and the entire professional team throughout the process is essential for optimal evaluation and management.
Keywords: Autism, behavioral disorder, counseling, neuropathology
|How to cite this article:|
Mathew MC. Toddlers with “autistic” symptoms: Professional practice guidelines and parenting challenges. Curr Med Issues 2017;15:38-44
The author is a Developmental Neurologist and was the founder professor and head of the department of Developmental Pediatrics at Christian Medical College, Vellore, 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, Kerala
| Introduction|| |
During my 33 years of full-time clinical work in the specialty of developmental pediatrics in three South Indian states, the third largest group of children that I was involved with were children who needed neurodevelopmental evaluation for their autistic behavior. Out of about 26,000 children who were welcomed for consultation for neurodevelopmental disorders, around 2400 children would have had some features that would justify them to be clinically screened for autistic behavior. In this recollection of my experience, I shall dwell on my insights to highlight some issues related to toddlers who are considered to be autistic.
| Toddlers With “autistic” Symptoms|| |
The suspicion of a toddler (between 1 and 3 years) being autistic comes into consideration when a child shows:
- Atypical behavior mannerisms: such as excessive crying without a valid reason, social indifference to interaction or preferred aloofness, inclination to be alone, intolerance to different social environments, indifference to usual play pattern, sleep-wake rhythm dysfunction
- Delay in acquiring language skills: or loss of already acquired expressive language skills, persistence with making jargon sounds, difficulty to be reciprocal in language transaction, inability to share or respond to expressions of affect
- Avoidance of normal learning process: distractibility, lack of goal directedness, avoidance to respond to play based interaction, preference for repetitive play and sameness, short or limited attention,
- Atypical motoric mannerisms: such as gazing, avoiding eye contact, flapping of hands, jumping, preference for some toys such as car, intolerance to some sounds, dissociating from what is happening in the environment, or showing unusual dexterity and special skills such as spinning objects, etc.
A child with such a developmental dysfunction would have progressed incrementally without any improvement in spite of efforts to engage a child socially, cognitively, and linguistically! The normal toddler developmental process in some domains would appear to be deranged, even when they perform at a level beyond their chronological age in some other domains.
| Practice Guidelines|| |
Let me explore if I can bring in some perspectives on professional practice guidelines and parenting challenges under the following subtitles.
- Causal pathways and risk factors
- Parenting dilemma
- Professional approach to diagnosis
- Integrative support.
Observation of the child by the parents and the treating team is the first step in approaching a child with suspected autism [Box 1]. Now that, there is an increased professional and parental awareness about the usual neurodevelopmental trajectory of toddlers, even a minor departure in the developmental sequences is usually noticed by parents.
One way to verify the observations that parents or teachers make about the differences in the language skills, communication pattern, or behavior is to request the parents for a video recording of a toddler's activity at different times of a day during self-play, playing with other children, meal time, outdoor activity, activity profile in public place, etc. Some toddlers might exhibit strong likes for some form of play, food, or toys, which would be evident in the video. A video clip, if made on a few occasions during a span of about 3–4 weeks, would be a dependable guide to decide if a toddler would need further formal observations to confirm the developmental departure.
I have found it useful to request parents or professionals to use objective criteria to describe sleep behavior, play behavior, social interaction, communication pattern, etc., and score them in an observational protocol for activities in all the domains of development. If three observations made at an interval of 3 weeks suggest a delay or abnormality in the domains of language, social skills, behavior, play pattern, etc., it is necessary to arrange for a formal screening of the toddler in a professional setting. Parents can approach a pediatrician, neurologist, speech therapist, psychologist, or an occupational therapist for an initial consultation.
I have made it a practice that video recordings provided by parents are compared with the direct observations of the toddler during a play session, which is also video-recorded with the permission of parents. Usually, three professionals from three different disciplines would review the evidence from the video and direct observations to decide if a toddler shows a tendency toward autistic behavior. All toddlers who show a suspicious behavioral profile are included in the neurodevelopmental monitoring program, which would also assess parental awareness of the special needs of the toddler. A formal review once a month for 3 months is what is ideal to make an initial decision if a toddler happens to be autistic behaviorally.
In a group of 43 toddlers at a center, who were initially thought to be autistic or diagnosed elsewhere, only 14 of them were confirmed to have an autistic profile at the end of developmental follow-up of 2 years. All of them were below 6 years when a final assessment was done to make a decision. This suggests that it is necessary to include all toddlers thought to be autistic in a developmental monitoring program with a follow-up plan every 3 months with video clippings from parents whenever possible and a direct observation once in 4 months to make a decision.
Causal pathways and risk factors
Autistic behavior is a symptom complex caused by an array of underlying pathology or a genotype or neuro architectural dysfunction or environmental factors. It is necessary therefore to attempt to find the causal pathway leading to the autistic behavioral profile [Box 2].
In an on-going study, while going through the first impressions of the neuropathological state of sixty-three children below the age of 8 years, who were noticed to have autistic behavior, we came across phenotypes suggestive of several pathologies [Table 1]. Of the three children with deafness, one had autistic behavior. Two of the four children with visual impairment showed autistic symptoms.
|Table 1: Neuropathological phenotypes associated with autistic symptoms (seen in 63 children - ongoing study)|
Click here to view
Possible risk factors
In the study, we came across different risk factors such as history of low Apgar score at birth, birth anoxia, hyperbilirubinemia during neonatal period or antenatal risk factors or neonatal complications of intraventricular hemorrhage, meningitis, or prolonged ventilator support beyond 7 days in those under observation for autistic behavior. Hence, the symptom complex of autistic behavior seems to be the result of different causal pathways affecting the developmental process as already proposed in the literature.
However, in a group of nine children in the above-mentioned observational study, we found five common features: (1) Some risk factors at birth or during the immediate neonatal period, (2) one or both parents not being available as caregivers after the initial 4 months of infancy, (3) a relocation of children to a new place during the 1st year where a different language was spoken, (4) viewing television for 2 h or more including during the feeding times, and (5) difficulties in establishing or continuing breast feeding. These observations have become research questions for us, for which we have commissioned a prospective study to explore and define the role of these factors in the causal pathway for autistic symptomatology.
As the genotype of autistic behavior is widely discussed in literature with several loci of aberrations found in the chromosomal structure of those manifesting autistic symptomatology, it is likely that in the future, some more clarity will emerge on the genetic origin and the epigenetics associated with this disorder.
Most parents carry a “burden” of the diagnosis from the time; they hear from the professionals about their toddler being autistic in behavior. In a parental interview conducted with eighty parents since they knew for at least 6 months that their preschool child is under evaluation for autistic behavior, we found that the prominent expression of the parents was anxiety about the neurodevelopmental and educational outcome. Any reference to the diagnosis of autism often results in fear in parents [Box 3].
I was invited last year to preside over a function to inaugurate a music school that a young adult of 21 years had set up in a city. He was under observation for his autistic behavior from the age of 2 years. When I first interviewed the parents at the time of the diagnosis, they were anxious for his future. However, they accepted to go through a step-by-step planning for their son, which made it possible for him to continue in a regular school with learning support, receiving exemption from learning some subjects. He went on to complete a music qualification from the Trinity College of Music, UK. He developed language skills although only slowly and became socially comfortable in familiar settings. He is independent now and can manage his affairs on his own with minimum supervision. He needed treatment for depression, attention deficit, sleep-wake dysfunction, reactive airway disease, and seizure disorder during the in-between years. The family coped with these demands because they received social and emotional support from professionals and friends. Although such success stories might be seen as an exception, my observation in the follow-up of seven young adults for ten or more years from their childhood is that five of them developed skills to pursue a vocation that gave them employability. The remaining two function under supervision and shows a fractured developmental trajectory with a blend of good and bad seasons.
Responses of parents
I come across parents who have a natural response of fear and anxiety from the time; they are told about the autistic profile of their toddler. They often recover from this only slowly and partially or stay frozen emotionally for too long. Many search for an ideal therapy to give the best benefit to their toddler. On the other hand, I have also come across some other parents who began with what was feasible to enlarge the learning, communication, and social prospects of their toddlers through a structured play-based learning program. They used the local resources of a preschool and therapists available close to their home to stabilize the child through an activity-based learning and communication process. These parents who kept in touch with a team of professionals and monitored the developmental needs of their child regularly seemed more settled than some others who were making “valiant efforts” to experiment with any new idea of therapy that looked novel or special. The siblings of autistic toddlers were the subjects of our enquiry in the recent years to find out the sense of “belonging” or “neglect” they experienced at home on account of the demands on their parents. The elder siblings generally felt strongly about the imbalance at home because of the struggles their parents had to face in the pursuit to make their autistic sibling “normal.”
Protective and restorative counseling
One reason that makes me feel sympathetic toward some parents is when toddlers “lose” the language and social skills in the 2nd year of life after a steady developmental momentum in the 1st year! Their joyful anticipation is interrupted by a shocking realization of something awful, adversely affecting the developmental progress of their child. If the professionals were to pronounce the possibility of an autistic behavioral phenotype insensitively, it plunges the family into despair. Professionals who deal with autism can learn a lot from the thoughtful approach of counseling which is effectively used at the time of testing for HIV infection status. It is this counseling that restores an individual and helps bring together the pieces of his or her life. What needs attention at the time of disclosing the diagnosis of the autistic behavior of their toddler to the parents is a protective and restorative counseling service that would give them a road map for their future!
Distance developmental monitoring
Another dimension parents often seek help for is for the unexpected events that may occur as the toddler gets older. There would be comorbidities such as attention deficit and hyperactivity, sleep rhythm dysfunction, epilepsy, obsessive patterns, psychosis, dysthymic state, which compound the clinical and developmental progress. Hence, there is an uncertainty hovering over parents about what shall become of their toddler when he or she gets older. It is desirable for parents to be in touch with the professionals by sending video clippings of their toddler's social play, behavior, and communication at least on a quarterly basis. The professionals ought to be open to look for cues of subtle or overt signs of comorbidities. This form of “Distance Developmental Monitoring” by telephone or video reviews has been the mainstay of my approach during the last 15 years since I began a more structured approach to review toddlers for any new symptoms rather than wait for the parents to come physically.
Genetic testing and counseling
Many parents need help when they contemplate having another child while their toddler is under monitoring for autistic phenotype. This calls for dialog with other consultants from different specialties. It is necessary to look into the history of families on both sides for three generations or more for neuropsychiatric disorders and audit the antenatal, intra- and post-natal events during the earlier pregnancy. I have found that developing a Morphological Screening Clinic is a valuable resource in the Child Development Center. Such a clinic would serve to identify the morphological status of children to arrive at a syndromic diagnosis. This is one way of probing the genotype of any autistic toddler and of his or her parents before a final decision is made about planning for the next pregnancy. The identification of the genotype would reveal the mode of inheritance and foretells the chance of recurrence.
Professional approach to diagnosis and management
There is a spectrum of diagnostic and therapeutic approaches currently in practice to help toddlers having an autistic spectrum disorder. It was suggested earlier that the final diagnosis is differed till 36 months of age. However, there are checklists (e.g., M-CHAT checklist) that professionals can use to screen toddlers for autistic phenotype even earlier than that. They are helpful and objective. A transdisciplinary approach is ideal to make a reliable early diagnosis [Box 4].
Following the clinical suspicion of autism, a morphological and neurological evaluation is essential. Neurophysiological or neuroradiological findings are not conclusive in the diagnosis of autistic spectrum disorder. They, however, provide helpful indications of the likely behavioral, cognitive, and language patterns a toddler is likely to manifest later in childhood. This would lead to ordering a few investigations.
I have found it valuable to request for electroencephalogram (EEG) if there is suspicion of sleep dysfunction, subtle seizure, unexplained crying episodes, obsessive motor pattern, fever-related seizure episodes, sudden loss of language skills, angry or violent behavior, etc., The EEG is a reliable source of information to decide if there is a delay in neurophysiological maturation of the brain. I have found the EEG, a valuable resource to decide if the sleep-related dysfunction, is associated with poor sleep architecture in the EEG tracing. If a child known to have sleep-wake rhythm dysfunction, sleep latency dysfunction, or parasomnia, is found to have sleep-related abnormalities in the EEG tracing, it is worth using pharmacological agents to modify this. A recording of EEG would be helpful to pick up children who might have Landau–Kleffner syndrome or semantic-pragmatic disorder due to a lesional cause. Sometimes, EEG patterns help to confirm suspicion of West syndrome, tuberous sclerosis, etc.
In clinical practice, anti-epileptic medications are not initiated for all children who show electrical rhythm dysfunction in the EEG tracing when they do not have a history of clinical seizure. Although a double-blind study alone would establish the evidence and justification in using anti-epileptic drugs on those who have only electrical rhythm dysfunction, most clinicians depend on their experience to make the decision about as to who ought to be treated in the absence of clinical seizure.
Toddlers with an EEG suggestive of seizure and who have had clinical seizure or video proof of overt or subtle seizure, or a repeat EEG after 3 months shows similar findings such as the first record or more pronounced paroxysmal changes would fall in a different category. If these toddlers also had several adverse events perinatally and thereafter, they would be considered for a therapeutic trial with anti-epileptic drugs. When this decision is taken, the toddler is reviewed for improvements in the domains of language, behavior, social skills, attention, etc., every 3 months.
Magnetic resonance imaging of the brain
The magnetic resonance imaging of the brain is a diagnostic tool that I have found dependable to make a lesional diagnosis if a toddler has hard or soft neurological signs on clinical examination. There are different neuroradiological findings in the corpus callosum, cerebellum, amygdala, hippocampus, frontoparietal areas, etc., which have been observed in the neuroimaging of children with autistic phenotype.
It is common to screen for biochemical parameters such as levels of lead, Mercury, IgE, and Vitamin D, out of which I have found the latter two helpful for therapeutic purposes. I screen the lipid profile in obese children as it can help in further evidence for diagnosis of children suspected to have Pradeep-Willi syndrome, Sotos syndrome, etc.
Therapy for autism
Sensory-motor integration therapy, auditory integration therapy, picture-based communication approach, conductive education, behavioral modification therapy, etc., are different intervention approaches which are found to be effective in some children and not so in some others.
The developmental outcome is determined by the associated neuropsychiatric comorbidities. The presence of attention deficit, hyperactivity, psychosis, mood disorder, obsessive and compulsive behavior, oppositional or defiance behavior, etc., compound the responsiveness to cognitive and educational outcome. I invite a child and adolescent psychiatrist to be actively involved when neuropsychiatric comorbidities are evident.
I would recommend use of melatonin (3 mg) whenever there is an evidence of sleep initiation dysfunction, sleep interruption or insomnia or sleep rhythm dysfunction or daytime drowsiness, or microsleep. Instead of waiting for a specialist's opinion administering this drug around 8 pm would bring relief from the distress of insomnia for a toddler and parents. Usually, in 3–6 weeks, the sleep rhythm would show some respite.
One advantage, when a toddler is identified to be showing autistic symptoms, is the opportunity it provides to invest in the developmental prospects by providing activities to which a toddler responds. The responses to therapy vary from child to child. Some respond to musical therapy, some others to movement therapy, yet others to group therapy, some others to drama therapy, etc., During the toddler years, it is necessary, therefore, to individualize the therapy to optimize the interest and participation levels. The decision whether a toddler would benefit from joining a playgroup would depend on the initial spontaneous response to different intervention approaches in a group setting. While using computer-based play activities or video-based learning, it is important to remember that this could reinforce the preference for solitary play behavior of a toddler if it is not balanced with sufficient social interaction. The ability for social interaction being a deficiency in toddlers when they are autistic, it is good to create a social environment where it can take place.
I have been surprised by the progress some toddlers have made when they have been part of an activity-based play environment under supervision. Those who did not respond well have had comorbidities and a complex causal pathway for their disadvantages in social and language skill acquisition.
One subgroup of 24 toddlers during the last 2 years who showed a decline in their social skills and language skills had a strange common circumstance, they were all relocated to a new geographical area where the language of communication and social setting were foreign to the child! I have had other clinicians mention to me for a while now about their observation of some parents telling them about the decline of the language and social skills of toddlers following relocation in another geographical area. This information is being turned into a research question currently!
Every toddler with autistic phenotype can be dissimilar from the others in his or her developmental profile and prospects. What works for one toddler would not necessarily work for another [Box 5]. For example, a toddler with fragile X genotype would be different cognitively, socially, and behaviorally from another toddler with autistic symptoms whose genotype has no variance. The behavioral phenotype, in this instance, is determined by the causal pathway, which resulted in the child manifesting autistic behavior.
This therefore calls for a holistic approach involving experts from various fields while planning for the developmental evolution of a toddler, who is under monitoring for autistic in behavior. A multidisciplinary team comprising of a psychologist, occupational therapist, speech-language pathologist, nurses, and doctors will be necessary to provide integrative support.
Proposed therapies and alternative medicine
There is a diverse opinion on the role of restricting wheat products, milk products, food with preservatives and additives, etc. The gluten-free diet, megavitamin therapy, countering the enterotoxin absorption from the gut, avoiding drugs that disturb the microbes in the gut, etc., are therapeutic modalities which are advocated by some, but contested by others.
There are some claims that some Ayurvedic medicines do help autistic behavior symptomatically. However, this is not substantiated enough. Similarly, there are other alternate therapies in use. However, no single therapy or combination of therapies with diet modification or megavitamin therapy seems to show sufficient evidence of a convincing favorable outcome.
Therefore, the team of professionals ought to be in dialog with each other to find a way forward that would suit a toddler and parents. The emphasis ought to be on individualizing the treatment plan.
| Conclusion|| |
In the absence of any proven benefit through pharmacological intervention, what is now possible is to offer a neurodevelopmental augmentation plan to promote the residual and hidden abilities of toddlers. The involvement of the different specialists while planning for this would optimize the benefit. It is advisable for a toddler to join a playgroup from the very time of the first suspicion of autistic behavior. This would help in the evaluation of the skills of a toddler and supervise the developmental prospects.
In summary, I have felt for a while that there is a hurry among some professionals to “label” a toddler who has a developmental departure cognitively, linguistically, and socially to be “autistic,” which to me is a risky step as so, leaving no trace of the initial suspicion. I have felt it comfortable to monitor toddlers who have a transitional clinical and behavioral phenotype for at least 2 years before a final decision is made. During this time, for convenience and reference, they are referred to having “Developmental Communication Dysfunction” with or without comorbidities. I have found it valuable to reconstruct the causal pathway as much as possible for the symptoms of the toddler, which to me is a facilitating approach to stay open about the evolving behavioral phenotype. All toddlers who are suspicious of having an autistic-like behavioral phenotype ought to receive an integrated learning support under good professional supervision. The earlier they can be integrated to a playgroup the better for them and for their parents!
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Conflicts of interest
There are no conflicts of interest.
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