Autism Spectrum Disorder (ASD): Early Intervention: When And How

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Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socialises with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behaviour, as per Mayo Clinic.

The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity.

Autism spectrum disorder begins in early childhood and eventually causes problems functioning in society - socially, in school and at work, for example. Often children show symptoms of autism within the first year. A small number of children appear to develop normally in the first year and then undergo a period of regression between 18 and 24 months of age when they develop autism symptoms.

While there is no cure for autism spectrum disorder, intensive, early treatment can make a big difference in the lives of many children."

About 1 in 100 children in India under age 10 has autism, and nearly 1 in 8 has at least one neurodevelopmental condition.

To understand ASD better and how to help the child in the spectrum, I spoke with Anuradha Nautiyal, who is a Neurocognitive Developmental Therapist & Remedial Therapist with Hope The Early Intervention Centre:

Q. What is Early Intervention & how it helps children with ASD?

A. Early Intervention typically refers to services and programs that help children in their early years (0-5 years) with developmental delays.

One of the most interesting features of the brain is known as neuroplasticity. It refers to the brain's ability to change /adapt/grow neural connections based on the changes in one's experience with their environment. A child is born with millions of neurons but is not connected yet. As the child interacts and engages with his/her environment, the connections build. Repeated experiences make these connections stronger. Somewhere between the age of 6-8 years (no one knows when), the brain does stock-taking and pruning. It uses the "Use or Loose" approach to prune and retains only those neurons that have an active connection. All the unconnected neurons are discarded. Therefore, it becomes imperative to give a variety of meaningful experiences to children in their early years (0-5 years) for better mental and physical growth.

In the case of ASD and other delays, giving repeated, meaningful experiences can help build new connections. At this early age, it is easier to facilitate them to explore and experience the world around them. It is also easier to manage their behaviours. If early intervention is not provided and delays are not worked upon, secondary behaviours like hitting, pinching, pushing, throwing, screaming, spitting etc, may start. So earlier the intervention, the better the prognosis.

Q. I understand the spectrum is vast however, can you share a few checklists for parents which should make them reach for assessment and early intervention at the earliest?

A. These are some early warning red flags. If you see them, please consult your paediatrician at the earliest.
By 6 months - the child is not making eye contact when you interact with them. Not moving head/eyes to follow or track a moving object. The child is not reaching out to grasp things within reach. The child is not responding to loud noises.
By 7 months - The child is not laughing or making gurgling/squealing sounds, not returning your smile, Not Babbling
By 12 months - The child is not responding to names, not uttering single words, not pointing or making any gestures for communication. Not sharing joy/experiences with you or not being able to share a common focus with you.
In addition to the above, missing any motor milestones also should be addressed. It has been seen that some children may have regression around the age of 1.5-2 years and may lose some of the skills that they had earlier.
If you see any or all of the above, it is better to consult your child's paediatrician.

Q. Can Parenting be a reason for a child to have ASD?

A. No. that theory was rejected long ago. But if a child is pre-disposed and gets an environment where a family cannot spend time with the child and the child in his early years is kept occupied by TV/Device viewing, then the child may start showing delays.

Q.I came across the term "Global Developmental Delay" has covid /the pandemic resulted in increased cases of ASD?

A. yes, the pandemic did result in increased cases, and a new term, "virtual autism", was coined to refer to this situation. Parents, in the absence of outside support, were forced to use digital platforms to occupy their children to meet their work schedules. With little to no social interaction, high screen usage, and no adequate stimulation, many children in their early years started showing autism-like features/symptoms. They showed features like poor eye contact, language delays, rigid behaviours and social anxiety. However, with appropriate stimulation, they showed significant improvement.

Q. India does not lay down clear developmental milestones or standardised milestones. Does that make diagnosis difficult?

A. That's not accurate. India uses pretty standardised checklists like the Portage (and others) to measure development milestones. We also have standardised diagnostic tools like the INCLEN Diagnostic Tool (INDST-ASD) and ISA for the assessment of ASD. The difficulty in diagnosis is due to the nature of the disability, where the severity and features may vary from child to child.

Q.I have heard so many people say Boys are slow, they talk late, walk late etc. In some cases, that delays parents seeking the intervention at the right time. As a therapist with a better understanding, does it frustrate you, and what can be done to eliminate that?

A. Unlike some of the other disabilities, Autism doesn't present any physical features. So, children on the spectrum look physically normal, making it harder for the families to understand that there may be an underlying neurological disorder. So, when they see delays, it tends to get brushed aside, thinking the child will pick up. Similarly, behaviours are often seen as "discipline" issues.
I think creating awareness about ASD, and educating people about the importance of development in the early years is very important in this case.

Q. As a country, we don't have a developmental assessment as part of the child's initial care, similar to how we do have for vaccination. Does that result in further delay of intervention?

A. Well. We do have processes in place. The vaccination card itself has developmental milestones listed on it. This allows the paediatricians to raise a red flag for any delays at an early stage. The assessment is not done for everyone but only for those who show red flags. There are standardised tools used to assess formally and informally. M-Chat is one such tool. Besides, India has its diagnostic tools like ISA and INCLEN Diagnostic tools specifically for ASD.
So, the delay is not due to a lack of tools or checklists but rather due to a lack of awareness and delay in acceptance from the families.

Q. Some advocates believe we shouldn't label the child, but doesn't that add to the stigma? If someone has diabetes, one would not think they shouldn't be labelled. Would you agree that labelling will make acceptance and treatment easier?

A. Yes, I agree with you - call a spade a spade. In my opinion, it's not about labelling the child but about working with the child and helping him/her reach their maximum potential. For that, we need to clearly understand the difficulties/symptoms the diagnosis brings with it. Even to include the child in a schooling environment or avail of the exemptions and benefits that the educational/boards/government may give, one needs to know the diagnosis. It is important to call out the situation as it is. With understanding, we hope to bring awareness, and with awareness, we hope to bring empathy and inclusion. All this is not possible if we are not open or not accepting the situation.

Q. How does one differentiate between quirks and developmental delays?

A. Developmental delay is persistent and consistent across the area in which delay has been identified, while quirks are a few odd/rigid behaviours or habits about a particular thing or situation which may change as the child develops and grows.

Q. What is the right age to seek early intervention?

A. As soon as you observe or identify a delay.

Q. Do you face parents' reluctance in getting the required therapy?

A. The short answer is Yes. The long answer is that it is hard for any parent to see their child being diagnosed with any condition, whether physical or neurological. They go through the stages of grief before accepting and coming to terms with the situation. Some parents take longer to reach acceptance, and more so for children on the spectrum as they tend to look normal in physical appearance. Parents may look for "magical cures" and may show reluctance to go for therapy. The proper family support, guidance and counselling can help the parents accept and love their child the way they are and become an active partner in his/her development.

Q. Can you share different types of therapies that help children?

A. There are many different therapies like Neuro-cognitive therapy, Occupational therapy, speech therapy, and ABA to name a few. Newer research and knowledge about ASD have led to many new kinds of treatments some of which are not even evidence-based. So my request to parents would be not to get swayed by the buzzwords; instead, do your research and see what works for your child. Many a time a child may have to go for multiple therapies.

Q. Early Intervention therapies are non-invasive. The worst that can happen is that a child without ASD learns to manage a few behavioural issues. Still, there is hesitation in taking the child for that. What is your advice for such parents?

A. See, there are many reasons for it. Lack of awareness that there is a problem (especially if it is mild), unable to accept the situation that my child needs help, and last but not least the social stigma attached to developmental delays are some of the things that lead to hesitation.
The early years are the most important for mental and physical development, and any gap at this time, if left unattended, will only grow wider. I want the parents to remember that the prognosis depends on early intervention. As I had mentioned before - The earlier the intervention, the better the prognosis. Talking to someone you trust or going for counselling will help. Don't delay; take that step.

Q. Parents of children with ASD also need help with acceptance and dealing with the situation. Are there support groups where they can find help?

A. Yes, there are many support groups. With WhatsApp becoming so popular, many support groups are on WhatsApp these days. Talking to other parents, you may meet at the therapy centres or other places that can help you find a support group for your needs. It also helps in understanding that you are not alone. So connecting with others is extremely important but remember -one size does not fit all. So Take ideas but see what works for your child.

Some parents coming to our centre simultaneously have formed their group. They go out for coffee and snacks, share a laugh and life hacks etc when their children are attending therapy. It is essential to de-stress and energises yourself to handle the child better.

Q. How difficult has it been breaking the news to Parents that their child is neuro-diverse?

A. It is difficult because the condition is lifelong, and severity and prognosis vary. But having said that, we like to give hope to parents that all is not lost and their child can learn to live a meaningful and independent life with true love, care, proper support and timely intervention.

Q. While dealing with the child, have you ever realised that a parent is an undiagnosed person on the spectrum? The resources that we have access to, our parents did not. For your therapy to work for the child, the parent may or may not also have to consider treating themselves; how do you tread forward in such cases?

A. Yes, it happens sometimes. As early intervention therapists, our focus is the child. We help the parent understand what we are doing and why. We work alongside the parent to give them the support they need and enable them to follow a home program to get the best results out of therapy.

Q. Can children on the spectrum with proper therapy and assistance do well in life?

A. Yes, most certainly. They can do well and also learn to live independently with proper training.
A few years ago, I was fortunate to meet an Autistic adult who, at that time, was working in a multinational company and drove a two-wheeler daily to work.
To achieve this, proper therapy and training are a must. The training is required in the technical aspects of the job and social and professional aspects like communication, time management, personal grooming, self-help, self-regulation and life skills etc.

Q. Any guidance for the parents struggling with the child's ASD?

A. Yes. The parents are so busy going from therapy to therapy that they forget to take a breather themselves. So, while there is an emphasis on maintaining consistent treatment and working with the child at home; having fun with your child is equally important. Have fun, love and appreciate your child for who they are. Build a bond, and it will go a long way. It may sound cliche, but love does wonders for the child.

Also, rejuvenate and recharge your energy periodically. Working with the child can take its toll on you. It would be best to take a break occasionally to rejuvenate and recharge your energies. It is important. Like your phone, your battery needs to be charged to function.
Parents, remember that you are not alone. So don't isolate yourself. Reach out to your support system. It can be your family members, parents/grandparents, nanny, support networks, or friend(s). See what works for you.

In the end, this is your journey, parents. It may have ups and downs, but make it as beautiful as possible. Destiny is not in anyone's control, so we focus on what we can do and what actions we can take with faith, belief and hope.