“Doctor, my child was diagnosed with autism at two and a half years. I moved from a small town to a metropolis for therapies not available in my town. I did all that was advised and my child is now reciting rhymes, writes alphabets and small words and attends school with a shadow teacher. But I can never send him to school without the shadow teacher nor leave him on his own with my relatives. He now has a routine that he refuses to change – he screams at the smallest change in routine. He is ‘better’ at numbers and alphabets but I struggle to teach him social behaviour and that embarrasses me no end. People call us names and worse, no one wants to invite him over. What went wrong?”
Autism is far more common than imagined. With a worldwide estimated prevalence of approximately 2.5% of the population, only a small minority is identified before three years of age. Many are diagnosed beyond six years of age, especially those with minor symptoms. However, in spite of greater awareness and interventions, the recovery is far from satisfactory. As a developmental paediatrician who has led teams in the field for over two decades, I have come to realise that we have failed to truly understand autism. We are confusing the symptoms for diagnosis. Worse, are we treating it symptomatically, which is why the improvements are not eventually enough. Absence of speech is the most commonly recognised presenting feature and treatment is sought for it. However, this is just one aspect of the spectre that an autistic child is facing. Do we need a new look, a paradigm shift?
How is autism recognised?
Lack of engaging eye contact and meaningful social smiles are the earliest signs. Absence of reciprocating non-verbal gestures, like running into mother’s arms or stretching out one’s arms in response to the mother’s outstretched arms for a hug (I call this the SRK sign after the actor’s distinctive arms-outstretched pose), or even not taking cognisance of the parent entering or leaving the room can be picked up in infancy and toddlerhood. Poor response to the caregiver pointing to something that the child otherwise may enjoy, or absence of pointing to the parent something that s/he wants, may be noticed. The child may prefer to reach out to the biscuits she wants or may bring the box to the parent or drag the parent to the box – thus indicating her wants, way past the age when she should have been pointing at things or even speaking.
The child may “hear” the sound on the TV or the doorbell, but may fail to respond to her own name being called out. Parents may attribute it to the child being in her own “mood”; persistence of failure to respond to name-call over weeks should ring an alarm and necessitate an immediate hearing assessment by a trained professional. If the hearing assessment is normal, it indicates that the child can hear but does not understand human speech as well as she should at that age. Delay in understanding other’s speech leads to a consequent delay in the child speaking herself. Speech delay is thus a symptom rather than the malaise.
Interestingly, the child is able to recall words, phrases, sometimes entire rhymes or the alphabet. This may lull the parent for a long time into assuming that the child is speaking well. However, one soon realises that the child utters these words or phrases at unexpected times, places or situations. It is almost as if a cassette is playing – a meaningless repetition of sounds, called “echolalia”. The child also starts displaying repetitive behaviours like flapping of hands or spinning, especially when excited. The wheels of a toy car are more engrossing to the child than the car as a whole. The child may show preference towards or may abhor certain sensations like movement, the touch and feel of certain textures, loud sounds like firecrackers, particular visual designs or patterns of music. Eating may be a problem – the child prefers only a particular type of consistency or taste. He may resist attempts at toilet training and may have constipation. Sleep disturbances emerge as a troublesome symptom. Some parents may notice that the child regresses from what he was able to do earlier.
Every child may not show each of the symptoms nor display equal severity across symptoms. Most often, the child is completely normal in terms of facial features and motor development as well as physical growth parameters.
What really is autism then?
Autism is the absence of normal development in the social behaviour and communication domain of development, rather than the presence or emergence of a novel disease. Our work at our institute makes us believe that the definitive clinical cause of autism is the genetic predisposition for excessive object engagement and the absence of human engagement that children display since birth.
Early signs are related to the absence or paucity of social engagement between the child and the caregivers. Everything post that is perhaps a consequence of this deficiency rather than independently occurring symptoms. This absence of human engagement disrupts the onset of the social behaviour and communication sequence (human engagement–human behaviours–non verbal communication–verbal communication–reading and writing) that helps children develop typically. Delay in speech, one believes, is a consequence of this early failure rather than an independent anomaly.
We have seen that helping parents target the cause (poor human engagement, excessive object engagement – we call it ‘ati vastu magnata-kam manushya magnata’) and working with the child along the sequence leads to sequential attainment of goals. We do not focus directly at the beginning on attaining speech or reading and writing, because this sometimes encourages echolalia and repetitive behaviours. The child will pick up speech and academics once the earlier milestones are in place. Work on the basics first, the rest will follow.
Having worked with hundreds of families at multiple centres and online, we have seen far better improvements. Parents are the cornerstone of this recovery. They need to be coached on the way ahead (the sequence) step-by-step and they need to implement the same at home. The improvements need to be tracked monthly by the medical team and the therapy and coaching has to be dynamic, as per the child’s attainment of typical milestones. The children need understanding and support from everyone – cantankerous uncles, loving aunts, vibrant cousins, disciplining grandparents, involved neighbours, patient teachers, smiling shopkeepers, caring security guards and supportive doctors – each one helps the child learn the diversity of human behaviour and communication. It takes a village to help a child with features of autism to be able to develop better and almost like any other child. A village that allows the child to enter each household, and learn how to behave and speak.
Unfortunately, ever since the western world started seeing these cases, the needle keeps swinging between trying to find an organic cause (organophosphorous poisoning or vaccines) and intervention focused only on symptomatic therapies. While the former has proved to be elusive (and even disastrous, as the incorrect implication of vaccines was) the latter has succeeded in spawning interventions running over years of repetitive, pattern-oriented teaching. Both the government and private sectors have focused on ‘providing’ the ‘approved’ therapies. However, provision of a medicine is not equivalent or enough to curing the disorder – in fact, the concept of health now encompasses well-being and not just cure. There is no outcome monitoring of the eventual benefits to children and families. Neither is there any guideline to suggest the duration and the ‘dosage’ of these interventions.
It is the norm to deny the time taken for betterment, or to even provide documented reports or plans or programmes, and there is almost no monitoring. Hapless parents are offered a disclaimer to begin with: “Autism is an enigma, the cause is not known, we don’t know if he will get better, these interventions may help, try and see,” etc. ‘Diagnosis’ is very often, scoring the symptoms on standardised scales – if you score, say 8 on 10, there is a high probability you have autism, if you score 7 on 10, you have a low probability of the same. Interestingly, the interventions that follow for both (7/10 and 8/10) are largely the same and still focus on the symptoms. The scores are used to classify the child as mild, moderate or severe – but there is no definite intervention method that offers a definite plan for mild and differs from another for severe, nor tagged with outcomes that have appropriate results.
Providing one session a month to every child (without any documented plan, programme, belief of adequacy and zero monitoring of outcome) and then to claim that we are ‘offering treatment’, is not only wrong but perpetuates the wrong. The institutionalisation of certain interventions has in fact prevented creative research in the field. It is unquestionably and socially a necessity for all of us to celebrate Autism Days to be supportive and inclusive for individuals and families with autism. It is questionable how this has led to the professionals joining in the chorus of calling it an ‘enigma’ or a ‘mystery’ – yet not hesitating to prescribe billions of dollars’ worth of these interventions internationally. I wonder whether we as medical professionals have abdicated the urgent need to find a cause of autism by being satisfied with symptomatic interventions and finding relief in the disclaimer that autism can never get normal. Unfortunately, this has led to mushrooming of doubtful and outright unindicated interventions that promise to give the parent magical relief – ozone therapy, hyperbaric oxygen, stem cell transplants have only thrived in this situation, much to the detriment of children with autism.
Finally, it is a myth that a child with autism does not get better. A combination of early and correct intervention can lead to tremendous improvement in the child. Although things may look difficult, and may take some time, in most cases they are not as difficult as one has assumed them to be. We need to have a new perspective towards autism. One that is simple and makes sense to the common man, rather than tossing out impressive jargon. For which, the medical and para medical profession has to perhaps decide to take the road less travelled. Let this be our call on World Autism Awareness Day 2024 – to break the stereotypes in our own minds about autism.
Dr Samir H. Dalwai is a Developmental Paediatrician and the Founder Director of New Horizons Child Development Centre that specialises in the care of children with special needs. He has served at various capacities in the Indian Academy of Pediatrics. Views expressed are personal.
