1 Introduction
Autism spectrum disorder (ASD) is a way to talk about a group of complex brain-related conditions. These conditions can make it harder for people to communicate and behave in typical ways. In other words, it affects how they talk, interact with others, and act in various situations. Autism is called a “spectrum” since ASD can affect people differently, with some individuals experiencing milder challenges and others more significant ones. There are a range of possibilities, with each person’s experience being unique.
This video covers key points in understanding autism.
1.1 The onset of Autism
Autism in children usually becomes noticeable around the age of 2 to 3 years, all though with increasing awareness, early identification is becoming more common these days.
Parents initially start noticing differences in the way the child plays, communicates and responds to the environment. Many children do not respond to their name or make eye contact. They may not use any words or stop using the few words they have been using till then. They may not be interested in the usual things other children are interested in. They may seem to be deeply involved with some unusual ways of occupying themselves like watching fans go round and round, flapping their hands, rocking themselves, singing to themselves constantly, lining up play things etc.
Children often show unusual amounts of distress when they are disturbed or they need to go from one activity to the other. They appear preoccupied and may not notice the presence of other children or adults around them. Parents typically struggle to understand why the child is in constant distress.The child appears adamant, uncommunicative and becomes unmanageable.
Usually this is the time when parents seek help from medical professionals. Pediatricians refer children to developmental pediatricians or developmental psychologists. The child may initially be identified to have a developmental delay and eventually handed a diagnosis of being on the Autism Spectrum.
1.2 Why is this happening? How to deal with this?
Currently, we do not know the exact cause of autism, though the research points to a variety of factors – genetic, bilological and environmental - contributing to it. Since autism is caused by a variety of factors working together, and currently we do not understand which specific factors are working together in which specific ways to cause autism, there is no medical way to “cure” autism. However, with the help of various therapies, many people on the spectrum can learn to manage autism to a large extent, and with the help of caregivers, lead fulfilling lives.
1.3 What does it mean for the parents, the child and family?
The immediate implication of autism diagnosis for the parents is that they need to rethink their ideas of parenting and their expectations of the child. Children on the spectrum may have various neurological and physiological differences that cause them to experience the world very differently from other people. Parents need to be willing to learn about their child and how autism impacts them. They need to be open to learning about various therapies and educational approaches in order to learn to manage themselves and the child.
In the Indian context, where support from public institutions may be limited, a diagnosis of autism for the child may require the parents to radically rethink their lifestyle and goals. They may need to plan their lives such that one of the parents spends time with the child and coordinates with the doctors, therapists, school and other people who interact with the child.
1.4 What is the way forward?
Once there is a diagnosis, the next thing to do is to think of various ways to start working with the child. This usually takes the form of therapies - behavior therapies to start learning to understand and manage the general behavior of the child; speech and language therapy to start a channel of communication; occupational therapy or physical activities to help the child with physical regulation. The specific things that are done in each of the therapies depend on the specific challenges and needs of the child.
Whichever of these therapies are chosen, one needs to ensure the therapies are aimed at making life easier for the child and the family. Over a period of time, the therapies are supposed to build the skills and competencies of the child, show the family how to work with the child, and over all, add to the quality of life of the family.
It also helps if parents continue to be involved in the therapies, understand the processes and learn the basic approaches, so that the child gets the same support whenever s/he needs it.
1.5 How does schooling and education work?
Schooling and educational needs may vary according to the child’s capabilities, difficulties, needs and interests. Thus, it is important to first develop an Individualised Education Plan (IEP) for the child based on his/her strengths and difficulties. The IEP generally takes into account the strengths and difficulties of the child, as seen by different people working with the child - parents, therapists, teachers etc. - and outlines a plan to equip the child with required competencies.
Depending on the specific needs of the child, a child may go on to a mainstream school with accommodations or go to a special school. Some children may need additional help. Homeschooling may also be an option in some cases.
1.6 Challenges people on the spectrum and families face as they grow up
The challenge with autism is that it is a spectrum condition, meaning it shows up in different ways in different people. The symptoms of autism may occur together or separately, with varying degrees of severity. This makes it difficult to characterize autism in a single uniform way. As they say, everyone’s autism is different and if you have seen one person with autism, you have only seen one person with autism.
For example, autism can cause severe coordination issues making a person unable to coordinate physical movements, leading to severe limitations in moving around, speaking and other motor planning activities. Autism may occur along with other neurological conditions like epilepsy. It can come along with conditions like anxiety, intellectual impairment, clinical depression, etc.
Each of these difficulties may need to be addressed in specific ways. Finding these therapies and educational approaches, paying for them and practicing them may become overwhelming for the family. There is also a social aspect to this - the family may not have much time and energy to socialize and may also face some social resistance.
One of the significant issues a family faces as the child grows up is to be able to continue to understand, relate to and work with the person he/she is becoming. Another difficulty is to find people and institutions that can provide help and support as the person grows up to be a young adult. In India, most therapy centers work with young children up to 8-10 years of age. Most schools - either mainstream or special - expect 16 year olds to graduate and go out. There are very few institutions that provide meaningful alternatives and support beyond the teenage years.
1.7 How is life as an adult on the autism spectrum?
Children with autism grow up to be adults with autism. While they do learn to manage their autism and be able to deal with the world in their own different ways, they will continue to have autism and may also need to have continued support.
When one looks at the variety of difficulties, their varying levels and the different combinations they occur in, it stands to reason that there is a spectrum of outcomes as children grow up into adults. Some children grow up to be adults that need to depend on caregivers for basic health, hygiene and safety. Some children grow up to be adults that may be able to manage their own in controlled settings like homes and sheltered work spaces. Some children grow up to be able to physically manage themselves but may need continued emotional support to deal with the anxiety of being different from everyone else. A few children grow up to be able to manage like everyone else.
At present, the support and employment opportunities for autistic adults in India are still evolving and will need significant strengthening as we go forward.
1.8 Understanding Autism - A video from Sethu
Here is a video on “Understanding Autism” from Sethu, a child development and family guidance center based in Goa. This video talks about the importance of getting a diagnosis, the causes of autism, and the challenges faced by people with autism.
A brief summary of the video in bullet points:
- Autism exists everywhere
- Getting a diagnosis means that you now have the chance to access the right kind of intervention program for your child
- There is no known cause of autism, but we know that it’s nothing that you or anyone did that has caused your child to have autism
- It is a spectrum disorder, and your child is unique in terms of their strengths, interests and challenges
- Your child experiences the world around in a very different way
- Children with autism need support with their social communication and social interaction skills
- They have a difficulty in processing all the information that their senses are taking in
- Autism is not the same as an intellectual disability
- Autism is not a disease, and it does not need a cure
Note: The video talks about understanding autism as “piecing together the puzzle”. It may be useful to note that the puzzle analogy for autism is not approved by all the people living on the spectrum.