Awareness around autism and the fact that it can show phenomenal improvement is gaining ground.
Now, we need to focus on authentic evidence-based scientific measures available for treating children diagnosed early.
Parents must insist on qualified team – which includes doctors and therapists working together – to ensure best results. They need to ensure accountability by asking for reports and notes and documented plans for intervention. Everything must be measured.
At our centre, we insist on detailed evaluation and reports for every child, else so many things can be missed.
As a minimum a detailed evaluation from a team of qualified and licensed developmental paediatrician / neurologist / child psychiatrist, clinical psychologist, occupational therapist, speech therapist, ophthalmologist and audiologist is a must.
As needed, the developmental paediatrician will involve a nutritionist, a geneticist, a special educator among others. Don’t hesitate to ask them about their qualifications and credentials. Better still, look up their credentials online.
Recently, while addressing a group of professionals at an international conference, a therapist asked me about her patient – a child who was diagnosed with Erb Palsy (injury to the upper limb during birth) and she is doing excellent work with that.
Her worry was that this child – now two years old – has poor social interaction and communication. She wondered why a child with Erb Palsy would do this.
This obviously was a child with autism, who also had an injury to the limb during birth.
The issue is – problems can co-exist. Each specialist looks at the child from her / his ‘expertise point of view’, and may be oblivious of other problems. Had this child received an overall evaluation, he would have been picked up much earlier and other therapies could have been instituted and thus, the child would not have lost valuable time.
Thus, every child must be seen thoroughly well and not cursorily or only from one point of view. Observations, opinions and intervention plans must be documented. We must not work in silos, but as a team. We owe this to the child and the family.
Parents often note something amiss when the child does not speak as per his / her peers. They may not be aware that the child also does not respond appropriately to what they speak. They may not have noticed the lack of nonverbal language (meaningful gestures, body language) which is a pre requisite for verbal language (speech). They may not have paid attention to the meaningless parroting / repetition of words (echolalia) / words without meaning (neologism), meaningless repetitive actions and meaningless focus on objects. Thus, their only concern may be lack of speech!
However, just “speech training” will not help. I have had parents asking me for “speech training”, but they need to be gently and patiently counselled about this.
Once a detailed evaluation is carried out, the team can sit together and decide which areas need to be worked on. Developmental Intervention is an inter-disciplinary affair and each one needs to know their role and that of the others – so nothing is missed out in the child’s intervention. This needs to be documented because there are too many stakeholders and too many things to remember.
Thus, a child needs a programme that lays down emphasis on all this, not just arbitrary therapies.
At our centre, we try to be as objective as we can while fulfilling all these requirements, and documentation is most important. This keeps us grounded and focused on the fact that the child’s time is precious.
Parents’ involvement is key. Getting them to repeat the intervention measures at home is crucial. Improvement is important and it takes time; but, whether we achieve the best improvement possible in that much time is more important than just “some” improvement. Arbitrary intervention in anything leads to arbitrary results.
Autism is not something that can be left to half-done measures. Early professional intervention can have remarkable improvement. A child can be mainstreamed and included and can lead a near normal life.
None of us are perfect. A child with autism doesn’t need to be either. The child just needs to be happily involved with his family friends and society, like all of us.
And that’s eminently possible.
The author is Developmental Paediatrician, New Horizons Child Development Centre and Chairperson, Indian Academy of Paediatrics – Chapter of Neuro Developmental Paediatrics. He is also a Consultant at Nanavati Superspeciality Hospital