Autism is a neurodevelopmental disorder characterised by impaired social interaction, verbal and non-verbal communication and the presence of restricted and repetitive behaviours. India is becoming serious towards the inclusion of children with special needs, early screening, diagnosis and intervention, and different organisations with multidisciplinary teams of professionals are also serving as the backbone for the rehabilitation process.
Early inclusion of children with autism into the mainstream is important for the overall health and homogeneity of society. (Photo: Reuters)
The signs and symptoms of autism are present very early in the child. Parents are in the best position to look for the early signs of autism which can be not making eye contact (for instance, at the time of being fed), not smiling when smiled at, poor or no response to his or her name or to the sound of a familiar voice, not following the objects visually, no use of index finger pointing, waving, and gestures, not following the gesture when you point things out, not seeking attention, and poor initiation or response to cuddling. Imitation of facial expressions and gestures is not present, and there is difficulty in associatively playing with other children and many times these children are aloof. It is not necessary that all these symptoms need to be present in a single child, but it varies from one to another depending on the severity of autism.
Whenever a child is delayed or doesn’t achieve the age-appropriate developmental milestones in time, there should be preliminary screening and referral for ruling out any developmental disorders. There is a myth that is widely followed that some children (especially boys) usually speak late, so we keep on waiting for the crucial early few years. Accepting the wait and see approach can have disastrous effects on the development of children with neurodevelopmental disorders.
Apart from impaired communication and poor social interaction, there are some self-stimulatory behaviours like the flickering of hands, hand flapping, rocking back and forth, lining up toys, spinning objects, staring at lights, moving fingers in front of eyes, snapping fingers, repeating words or noises, as well as hypo or hypersensitivity towards sounds, can be present in these children.
Early signs of not having normal milestones are the red flags for autism and as the child gets older these become diverse. Impairments in later years in social interaction is about not associatively interacting with other children age-appropriately and not having proper communication which includes both understanding and expression. The symptoms range from mild, moderate to severe. They have their own ways of learning. The difference can be made to their lives when they are taught the way they learn.
Every year at the Child Development Clinic in Sir Ganga Ram Hospital, a mass awareness campaign is done for autism on the occasion of world autism awareness day on April 2. The aim of the initiative is to make people, parents and caregivers aware of the early signs of autism. Early intervention is the focus of the initiative.
There is a need for the sensitisation of people and professionals to look for early signs of autism. Paediatricians are the first contact for a parent. Parental concerns about delays in speech and language, poor response to name, extremes of behaviours from being self-absorbed to extreme hyperactivity and poor socialisation need to be taken very seriously and advised developmental screening.
Early intervention is between 0 to 3 years of age. It is the key to the management of children with autism, so the first step is to catch them early and young. The rise in the number of cases of autism has increased for the last 10 years. In the early 1990s, not many people knew about the disorder but the alarming rise has brought focus to it. Worldwide estimates of the prevalence of autism are one in every 68 individuals, which is a clear indication that we have to be ready to help these children and their families.
Special schools have made a significant contribution when it comes to the management of disabilities with developmental disorders. While special schools are often seen providing the most appropriate placement for students with special educational needs, heightened awareness on the integration of children with autism and other special needs, there is a necessity to create a more equitable society calling for a shift away from discrimination to inclusion. Teachers are well equipped in the metropolitan cities in special schools but a lot needs to be done for the upliftment of the infrastructure for providing all the services in the classroom in rural areas.
It is high time to eliminate any kind of discriminations that children with autism face at different stages in society due to social and other limitations in infrastructure, which create a disadvantage for them. Early preparations for their inclusion into mainstreaming are very important for the overall health and homogeneity of society. There is a need for proper structure and human resource to cater to children with autism.
By not taking children with special needs as a part of the society we limit the potential of these children to use the already existing services and hence inclusion becomes more difficult and the gap keeps on increasing. Deviation in children with autism is being made fun of, harassed at different levels starting from the relatives, parental discord, familial support, school admissions, right to live with dignity and access to all the facilities available to other typically developing children. Children with autism if provided early intervention can do very well in their lives.
Creating opportunities for these children will result in the change in mindset that they are lifelong dependent and hence shouldn’t be left out from the services provided to the other children. Understanding differently, learning in other ways, some deviant attributes shouldn’t lock our service systems to help these children. Advocacy, support, services, health and education is of prime importance for these children.
We have come a long way and now the field of psychological rehabilitation and developmental paediatrics and psychology is gaining momentum like anything. Prejudice against these children even without knowing the real conditions imbibes the thought that their difference can’t be integrated into our societal norms, which is wrong.
We need to create opportunities where a lot of people from varied backgrounds can discuss the support systems for these children in the form of support groups. Sense of belongingness, inclusion, right to life and education, respect and dignity, recreation, and helping them reach independent living as well as academic success should be discussed in detail wherein the state government has a crucial role to play. There is a need not only to create awareness about the disorder but at the same time sensitising people about the different needs that these children have.
Autism diagnosis and intervention is not done by a single individual but by a team of experts — that is to say, developmental paediatrician and psychologist, who work as a team with therapists which include special educators, speech therapists, occupational therapists, and other rehabilitation professionals. Parents need to monitor their child`s progress in different areas of development which include motor skills, adaptive functioning, personal social skills and language. No closed-door therapies are recommended for them.
Parents of children with autism in metropolitan cities are breaking the shackles of helplessness and coming forward to educate fellow parents about how to manage children with autism. Myths about autism and word of mouth interventions result in chaos and unscientific therapies. In fact, Food and Drug Administration in the USA has recently cracked down heavily on the myths called intervention for autism-like chelation therapies, hyperbaric oxygen therapy, miracle mineral solutions, probiotic products and detoxifying clay baths. We need to make parents and people aware of the scientific interventions backed by valid research like behaviour modification, which has proven very effective in the management of autism.
Research supports the inclusion of children, as it has been seen that the referrals for disruptive behaviours go down during the schooling hours. Individual attention is what is needed for these children. In adults, inclusion can lead to vocational training, which will help to get a job and be a part of a more diverse social group. Inclusion in the early years will help in a greater understanding of the differences in these children, which can be minimised by proper intervention and individual attention.
Key messages from the Consensus Statement of the Indian Academy of Pediatrics on Evaluation and Management of Autism Spectrum Disorder are:
1). The diagnosis of Autism Spectrum Disorder needs the involvement of a multidisciplinary team working together.
2). The intervention administered by a clinician should be 1:1 or 1:2 (child to therapist ratio), individualised for each child and with an interdisciplinary team that documents evaluation and intervention.
3). Parent-education and home interventions are more likely to be effective if made a part of a multidisciplinary intervention program.
4). Psychopharmacologic interventions do not treat the underlying ASD. However, they can improve the child's functioning and the ability to participate in behavioural interventions.
5). There is no evidence for the effectiveness of "complementary/ alternative" therapies and paediatricians should be able to counsel caregivers not to opt for these therapies.
Screening for all children should be done by a standardised autism screening tool at 18 and 24 months of age. If the child is above 18 months, then ASD specific screening tool is to be administered. If the child is below 18 months, then the following must be the course of action:
a) The evaluation of social communication skills
b) Commencing parental education
c) Rescheduling next visit after three months (if the child’s age is less than 12 months) or after one month (if the child is more than 12 months old).
If concerns persist, then administer the ASD specific screening tool. If screening results are positive or concerning then:
a) Continue parental education
b) Refer the child for comprehensive ASD evaluation
c) Initiate an early intervention program
d) Evaluate the hearing status
e) Schedule next follow-up visit after a month.
Management of autism starts with the diagnosis, which is done by a developmental paediatrician and psychologist (clinical or rehabilitation). Research supports that behaviour modification allows for relatively normal development in the child and reduce undesirable behaviours. These children do have the potential to be integrated into mainstream schooling provided early intervention by the team of professionals is provided to them.
There are no medications currently approved to treat autism, but medications may be used to treat certain symptoms, such as anxiety, hyperactivity, sleep disturbance and other behaviours that may lead to injury. Scientific temper needs to be inculcated and research-based interventions should be preferred as the only interventions for autism. We have come a long way in fighting for children with special needs, their early identification, management, intervention as well as their inclusion into society. However, more action is needed for inclusion.