Organizations for ASD

Autism Spectrum Disorder (ASD) covers a range of conditions that indicate a different way of experiencing the world. This can cause impairments, but it can also manifest itself in the form of different competencies. ASD is a sort of umbrella term that covers Autism spectrum disorder, Asperger’s disorder, Childhood Disintegrative Disorder, and PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified). It is a complex condition that presents itself through challenges in social interaction, speech and non-verbal challenges, and restricted or repetitive behaviors.

ASD is usually diagnosed early on since a majority of the noticeable symptoms start showing up when a child is 2-3 years of age. Autism is said to be more prevalent among boys. However, the symptoms of ASD that affect girls aren’t as widely studied. This contributes to fewer girls being diagnosed with ASD.

Here are a few organizations that work to enhance different aspects of life with ASD:

Autism Research Institute (ARI) -

The mission of the ARI is to "support the health and well-being of people affected by autism through innovative, impactful research, and education."

It maintains the position that autism is treatable. They support people on the autism spectrum as well as their parents and caretakers through online educational events and timely updates on new research in the field. They provide the Autism Treatment Evaluation Checklist (ATEC) for free on their website. It is an assessment tool that helps to diagnose symptoms of ASD. The test is offered in 23 languages. They also support researchers who wish to study ASD by sponsoring think tanks that discuss issues related to promising treatments and interventions.

Ummeed

Ummeed is a Mumbai based NGO with close to 70 professionals. Their work can be categorized into 3 main areas.

• Clinical Services - Ummeed gives concerned parents the opportunity to schedule a meeting with a developmental pediatrician for a pediatric assessment. They even let the parent know what to expect from the appointment. They also conduct developmental therapy and intervention programs that help children develop a wide variety of necessary skills. In addition to this, they also take into account the financial situation of the individuals involved and charge for their services accordingly.

• Training Services - Ummeed offers training courses for an array of demographics including parents, professionals, students, and teachers. The topics vary from special education and early childhood development to occupational therapy and social work. The difficulty level of these courses ranges from basic strategies that help autistic children to a full-fledged Autism Intervention Training Program (AITP).

• Research - Participation in various activities is considered to be an important outcome in the rehabilitation of individuals with disabilities. The Participation and Environment Measure for Children and Youth (PEM-CY) is a prominent tool developed by the CanChild Center in Canada. The tool helps to measure participation in children between 5 - 17 years of age. For the past 2 years, Ummeed had been working on adapting the PEM-CY to an Indian cultural context. The results of this work were published in The International Journal of Environmental Research and Public Health.

These organizations work at a community level to enhance the quality of life for people with ASD. On an individual level, we can help people on the spectrum by providing structure and finding non-verbal ways to connect.

Despite of the work done by these organizations, ASD is still a very taboo topic. People with ASD are widely stigmatized and viewed as incapable. While many individuals with ASD certainly require some support from those around them, it in no way describes their competency in life. A more appropriate term for such individuals would be "Neurodivergent". Neurodiversity refers to the concept that all brains are inherently different and that these differences do not mean that they are lacking. Neurodiverse individuals may have enhanced memory and logical thinking abilities. They may even excel in academic fields that do not require social interaction.

Above all, it is important to note that all individuals on the autism spectrum are valid and worthy.