Autism is far more common than imagined. With an estimated prevalence in approximately 1.7 per cent of the population, only a small minority is identified before 3 years of age. Almost half are diagnosed beyond 6 years of age, especially those with minor symptoms. Males are nearly four times more affected than females.
Recognising it early
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. Lack of engaging eye contact and meaningful social smiles should alert the discerning parent. 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, or even not taking cognizance of the parent entering or leaving the room are to be picked up in infancy and toddlerhood.
Poor response to the caregiver pointing out to something that the child otherwise may enjoy, or absence of pointing out to the parent something that s/he wants should also 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.
Delay in speech, one believes, is a consequence of this early failure rather than an independent anomaly. 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 attribute it, perhaps optimistically, 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.
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 tape 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 this little 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.
Over a period of time, difficulties emerge in self-soothing. Eating may be a problem—the child prefers only a particular type of consistency or taste. She may resist attempts at toilet training and may have constipation. Sleep disturbances emerge as a troublesome symptom. Pica is a common feature. Some parents may notice that the child regresses from what she 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.
Autism can get better
Autism is the absence of normal development in the social communication domain of development, rather than the presence or emergence of a disease. An unfortunate colloquial misinterpretation is—the word autism means “self-involved”. It never did. Dr Leo Kanner, in 1943, used the word autism to mean “coming from within”; the affected child carries the condition from birth and it is not acquired later.
This and several other misadventures have resulted in the complex social taboo and stigma that all of us create around autism. “Autism can never be treated”, “accept the child as she is”, “do not expect a cure”, “she will always be special and need special attention and schooling” are bandied about with confident impunity by experts. All of this, of course, is far from the ultimate truth.
Early suspicion should lead to early diagnosis. Unfortunately, the stigma often holds a parent back from seeking a professionally conducted assessment. Reckless opinions, labels and classifications of severity are unfortunately handed out as readily and randomly as predictions by a co-traveller amateur palmist on a train journey. Parents are well advised to check the antecedents and qualifications of the medical professionals they consult. It is best to consult other parents about their experience. A good way to ascertain a professional is one who hears you out well, elicits the developmental history well and explains her/his opinion about the diagnosis. It is not enough to be told that the child has speech delay—that is the symptom. You need to be given a good explanation of the cause. Make sure you receive a written report or opinion signed by the professional.
A combination of early and correct intervention can lead to tremendous improvement in the child. Your child needs a team of professionals working together with accountability—use the ‘signed document test’ every time, to check if the persons you are consulting for your child are accountable. Time is precious. Families have come to me with their 3-4 year-olds, after months of “intervention” and not a scrap of paper detailing anything that was being done. Beware of those who assure you they are maintaining notes—that is both absurd and unethical. Every child undergoing a diagnosis or intervention deserves a written documentation.
For those not physically close to these services, the pandemic has helped in launching a slew of online services that could be availed from a distance. However, one needs to be even more diligent about the services offered. Diagnoses and goals need to be discussed with parents. Documentation is the key.
Finally, do not expect results overnight. Our work at our institute makes us believe autism disrupts the onset of the social communication sequence. It is our belief and experience, over the years and with thousands of families, that working along the sequence leads to sequential attainment of goals. Do not focus directly on attaining speech; worse, do not chase reading and writing for getting admission in schools. The child will pick up academics once the earlier milestones are in place. Work on the basics first, the rest will follow. Do not hesitate to ask your team the goals they are working on. Every team needs to have (preferably) a written plan for the child that could be discussed with the parent.
It is a myth that a child with autism does not get better. We have had the immense fortune of having journeyed with hundreds who have got better and are leading a fulfilling life. Parents are the cornerstone of this recovery. They 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. 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.
Although things may seem impossible, 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.