Catch autism early: Key steps for early intervention to support autistic people

Swapnil was met with a distressing ordeal when he sought to top up his family's health insurance plan. The Bengaluru-based father was stunned by State Bank of India's discriminatory response when he disclosed his son's autism diagnosis to the insurance agent.

Despite maintaining coverage for himself and the other three family members, the insurance provider abruptly removed his son from the Arogya Plus policy and retained the other three. When Swapnil contacted the manager, he clarified that there was no policy provision for his son's condition.

Feeling betrayed and marginalised, Swapnil reached out to other health coverage providers like TATA AIG, ACKO Insurance and Star Health Insurance but was met with similar responses. "I filled out their online form disclosing my son's developmental delay/autistic condition. But their websites are designed in such a way that I could not proceed any further," Swapnil tells Midday.

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When Midday reached out to SBI, they refrained from commenting on the same. Unfortunately, Swapnil's experience mirrors that of Geetha, another parent from Bengaluru, who encountered similar discrimination from Care Health (formerly Religare) Insurance company when she disclosed her son's autism diagnosis. This systemic exclusion of autistic individuals from health coverage highlights a pervasive issue in the insurance industry, underscoring the urgent need for reform and greater awareness.

Despite these challenges, hope remains on the horizon for families navigating the complexities of autism. Health experts emphasise the crucial role of early intervention in supporting individuals with autism and their families.

By equipping parents with comprehensive knowledge about autism, they can effectively navigate the hurdles and advocate for their children's rights. Through increased awareness, parents and caregivers of autistic children can enable neurodivergent individuals to receive the support and respect they rightfully deserve.

Genes: Primary factor contributing to autism
Genetic mutations stand out as the primary contributor to Autism Spectrum Disorder (ASD), involving approximately 65 genes, informs Dr Sakshe or Sakshi? Jain, a consultant psychiatrist from Ruby Hall Clinic Pune. "These mutations often manifest as chromosomal abnormalities such as deletions, inversions and duplications."
Twin studies have shown a significant correlation, where if one twin has autism, the chances of the other twin having ASD are as high as 80 per cent. Moreover, siblings of individuals with autism exhibit distinct traits, including superior verbal and spatial skills but may struggle with tasks involving planning and verbal fluency.

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Additionally, ASD is often accompanied by comorbid conditions such as fragile X syndrome, Down syndrome, Duchenne muscular dystrophy, neurofibromatosis type 1 and tuberous sclerosis complex. Advanced parental age, particularly maternal age over 40, is associated with an increased likelihood of autism in offspring. Other risk factors include low birth weight, metabolic imbalances, exposure to heavy metals and environmental toxins, as well as fetal exposure to substances like valproic acid or thalidomide.

Misdiagnosis or underdiagnosis of Autism Spectrum Disorder (ASD) in females is a concern, possibly influenced by factors such as the masculinising effect of fetal testosterone, XY theory and decreased autosomal penetrance theories.

These theories suggest that females may carry mutations related to Autism Spectrum Disorder on autosomal chromosomes, contributing to the higher prevalence of ASD in males. Additionally, family history plays a significant role, as parents who have one or more children with autism have an increased likelihood of another child being autistic.

Differentiating between developmental variations and potential signs of autism in infants and young children:
Developmental milestones are essential markers of a child's growth, but it's crucial to note that there's a wide range of typical development. Jain remarks that similar to the Hindi saying "teen tigada kaam bigada," Autism is characterised by a triad of pathogenic features including lack of communication, interaction and repetitive behaviours.

Signs that may indicate potential autism spectrum disorder (ASD):
Lack of response to their name by 12 months.
Limited or lack of pointing or gestures to show interest by 12 months.
Delayed speech or lack of speech by 16 months.
Avoidance of eye contact or limited social interaction.
Repetitive behaviours such as hand-flapping, rocking or spinning objects.
Difficulty in understanding or expressing emotions.

Early signs and symptoms of Autism Spectrum Disorder (ASD)
According to the World Health Organisation, it is estimated that worldwide about 1 in 100 children has autism. Recent international studies have also revealed that one in 68 people have autism. As it becomes the third most common developmental disorder, India houses approximately 18 million people living with autism.
Health researchers have documented a deficit in attention skills of children living under ASD, including problems using eye gaze to coordinate attention, following the attentional focus of another person and drawing another's attention to an object of interest, shares Dr Ishu Goyal, deputy consultant neurologist from Sir HN Reliance Foundation Hospital.

The symptoms can be observed as early as 6 months when the baby shows limited smiling or non-meaningful smiles only. As the baby grows and is expected to attain social milestones like nonverbal communication of extending hands to be lifted or waving bye. When the baby does not show any such behaviour, autism should be suspected and milestones should be observed carefully, adds Goyal.

Steps for parents if they notice potential signs of autism:
The treatment of Autism Spectrum Disorder (ASD) involves both psychosocial and pharmacological interventions. Psychosocial interventions typically include early intensive behavioural and developmental approaches. "One such model is the CLA-based model, which heavily relies on techniques derived from applied behaviour analysis. This intervention is usually implemented on a one-to-one basis for numerous hours each week," shares Jain. During these sessions, therapists work closely with the child, focusing on practising specific social skills and behaviours.

Early intervention is key. Parents should consult with their paediatrician or a developmental specialist if they have concerns about their child's development. The healthcare provider may conduct developmental screenings or refer the child to specialists for further evaluation if necessary.
Additionally, parents can seek evaluation through developmental paediatricians, child psychologists or other specialists experienced in diagnosing ASD. It's essential for parents to document their observations and concerns to provide comprehensive information to healthcare professionals during evaluations, stresses Jain.

The interventions may commence as early as the diagnosis is established. This includes behavioural, developmental, educational, social, pharmacological and psychological approaches. Goyal informs that "behavioural therapy encourages favourable behaviour and ignores unfavourable behaviour."
Stress is laid on the development of language milestones that are mostly affected. Simultaneous emphasis is given to educating the child in ways and techniques to increase concentration. Also, slow involvement in the surroundings and with peers is facilitated along with training to modify responses to unwarranted stimuli.

Resources and support services for parents of children with autism:

1. Early intervention programs, such as speech therapy, occupational therapy and applied behaviour analysis (ABA), can help address the specific needs and challenges of children with autism.
2. Educational resources and programs tailored to children with ASD, including specialised schools or classrooms, can offer support and accommodations.
3. Local autism support groups and organisations can provide valuable resources, information, and emotional support for parents.

Genetic or environmental factors enhancing the risk of autism:
Genetic factors: Mutations in various genes contribute significantly to ASD, with around 65 genes identified to be involved. Family history plays a role, with parents who have had one child with autism having an increased probability of another child being autistic.Environmental factors: Factors such as advanced parental age (especially maternal age), low birth weight, exposure to certain toxins or medications during pregnancy (like valproic acid or thalidomide) and metabolic imbalances can increase the risk of autism.