New Ways Autistic Families Can Empower Themselves
Having a child with autism spectrum disorder (ASD) presents many challenges. As with most challenges in life, it can’t be entirely surmounted without the help of others. However, political whims and prevailing economic conditions can have an impact on programs and services. Even the most effective organizations can lose their funding if funders choose to revise their priorities. School programs can be diluted or eliminated. Insurance programs can be restructured or wiped out altogether. When times are uncertain and your access to resources is threatened, it’s time to look for new ways to move forward.
Worldwide, there are millions of families affected by autism who have no access to professionals or programs that can help them manage the challenges. In countries where resources are in short supply, those families who have support are often perpetually at risk of losing it.
There’s another scenario—one in which parents are not included in or informed about the therapy solutions provided for their child, which leaves them without the ability to reinforce what their child is learning. It may stem from a doctor’s tendency toward self-preservation, or from a simple lack of awareness around a parent’s capacity to promote his or her child’s development.
In India, the number of families who fit into these three categories far exceeds the number of families who receive reliable, effective support. Millions of parents have no access to trained professionals who can help their children with autism. Millions have a tenuous hold on resources that may or may not be there six months or one year down the road. Those parents fortunate enough to have found a qualified therapist for their child are often left sitting outside the therapy room, unaware of how their child is being guided and what they can do to extend the therapy on their own.
But some families are now moving forward with an innovative model that gives them resources, tools, and support so they can do more to help their children.
The model is based on the belief that parents know their child best. It also recognizes that while teachers, therapists, and doctors come and go, the parent remains the constant in the child’s life. There’s no one more invested in the welfare of a child than his/her parents.
In this parent empowerment model, parents work with a child psychologist to understand their child’s skills and strengths. Individualized education plans (IEPs) are created by the child psychologist with the input of the parent. Then teaching tools are selected to support the education plan, and they’re delivered to the home—a huge benefit for parents in poorly served areas. Parents are taught how to use the teaching tools through weekly phone or video consultations with a child development expert. Child psychologists and child development experts are available for support and mentoring, and they monitor the progress of the child.
In this model, IEPs are revised and new resources are delivered each month to keep the child engaged and to build on his or her strengths and achievements.
The model is gaining traction for several reasons.
In India, parents in the largest cities, such as New Delhi, Mumbai, and Bangalore, can find programs and professionals who can address their children’s needs. However, fitting a therapy session into a busy day, particularly when the therapist is located on the other side of one of these sprawling, congested cities, can be difficult. Furthermore, therapy sessions don’t always coincide with a mood that is conducive to learning: therapy sessions are typically scheduled according to the therapist’s availability, not according to the child’s moods and behavior patterns.
Most schools in India, unfortunately, are poorly equipped to meet the needs of children with autism. In late 2016, India’s parliament passed the Rights of Persons with Disabilities Bill, replacing a similar bill that was enacted in 1995. The bill applies to autism spectrum disorder (ASD), and it protects the right to free education for children between the ages of 6 and 18 with benchmark disabilities. Educational institutions that are funded or recognized by the government are required to provide inclusive education for children with disabilities. Yet, the schools’ administrators and teachers are not sufficiently trained or equipped to provide lessons in an inclusive setting. Parents are left searching for private schools that offer special education programs, of which there are few. Many of these are well beyond the reach of middle class families who often can’t afford the fees.
This is the reality for many parents in India’s most populous metropolitan areas. Those in smaller cities, towns, and villages are often entirely on their own.
An additional factor is the social stigma that’s attached to disorders and disabilities in India. The general public still lacks an awareness and understanding of developmental disorders, making it difficult for parents to take their children out in public. This is further compromised by the unpredictability of life in India’s highly congested cities, which translates into stimuli that are often hard for autistic children to manage and disruptions that send their routines for a toss.
As in other parts of the world, parents can be lured by the promise of new therapies that don’t actually work and unqualified professionals who claim to have expertise they don’t actually have. When the promised solutions aren’t delivered, it can throw parents and their children into a tailspin. They then set out in search of another program or therapist, which creates a revolving door effect that does more harm than good.
Parent engagement has been shown to be effective, and it is particularly effective in low- to middle-income countries, where access to programs, support systems, and professionals is limited. An added benefit of this parent empowerment model is continuity. Parents’ knowledge, resources, and guidance limits the interruptions caused by holidays, travel, and relocations. The ability to stick to a routine is also a plus.
Additionally, the focus on strengths is important, especially in an environment where awareness, and therefore compassion and understanding, are somewhat limited. The common approach here is to address the child’s weaknesses, with little attention given to the child’s strengths. But when parents are assisted in identifying and developing their child’s strengths, it introduces hope, positivity, and energy, which propels families forward like nothing else can.
The parent empowerment model doesn’t eliminate the need for child psychologists and therapists. In fact, they play an integral role in helping parents understand their children’s development patterns, limitations, and unique capabilities. Child psychologists partner with the parents to promote development. They monitor the child’s progress and adapt the program to meet the child’s needs. They understand how children with autism learn, and they work with parents to facilitate growth. The parent empowerment model effectively extends psychologists’ and therapists’ reach, enabling them to have a greater impact in the lives of more families.
In India, recognition of autism is on the rise, but the healthcare and education sectors have been slow to respond. Given the circumstances, enabling parents with knowledge, tools, and support is a solution that offers promise. From the parents’ perspective, it offers hope, and hope is indeed a powerful thing.
This article was featured in Issue 66 – Finding Calm and Balance