Autism Spectrum Disorder or ASD is defined as a developmental disorder of variable severity that is characterized by difficulties in social interaction and communication and by restricted or repetitive patterns of thought and behaviour. It affects 1 in 68 people worldwide, which suggests that there are over 18 million people with autism in India. While western countries provide fully sponsored programs, subsidies in therapy, free school and other benefits for people with autism, India still has a long way to go. In Goa, the responsibility to train and support people with autism is on Government services like the Pediatric Neurorehabilitation Centre, Goa Medical College and the District Early Intervention Centres in the North and South Goa District hospitals, as well as NGOs like Sethu.
Today on the occasion of World Autism Awareness Day, we spoke to Andre Velho, Head of Autism Intervention Services at Sethu, Goa, about the state of autism care in Goa, and the use of Assistive Technologies in improving communication among those with ASD.
How has acceptance of autism changed over the past few years?
Yes, thanks to growing awareness and therefore a change in perceptions about people with autism, efforts are being made to include and integrate them into mainstream school, employment and vocational activities. Autism is now officially recognized as a disability India and the Indian government has stepped up its efforts to support people with autism through legislation and grants. However, we have a long way to go. Parents face struggles every day. They have to think twice before going to the shop, taking the bus or attending a function because of how people will react if their child behaves unusually. Our reactions can cause parents to feel very embarrassed and this often makes them isolated. Only when society accepts people with autism as they are, their families will feel more confident in including them in community life.
With the growing number of autism cases in Goa, do you feel that we’re doing everything we can as a community to support people with autism?
No, but we are slowly getting better. Thanks to efforts of NGOs like Sethu and The Owl House, parent support groups such as TIES and government services like PNRC, GMC and DEICs, awareness in the community is growing. More people now know about autism. Many commercial establishments like shops, malls, restaurants readily help out in awareness building activities. Many mainstream schools have resource rooms which can accommodate the learning needs of children with autism. Recently, my colleague and I were invited by the Election Commission to discuss ways in which we can make voting more accessible for people with autism. But there is a lot more than can be done if people with autism are to have the opportunity to fulfil their potential and have a dignified future.
What are some common misconceptions about autism that need to be addressed?
1) Children will “come out” of autism: In some research conducted in India, Indian parents were found to recognize symptoms of autism almost a year later than families in the west. Parents sometimes use a “wait and see” approach or the “boys speak late” philosophy in the hope that the symptoms of autism will disappear on their own. The fact is that the symptoms of autism do not automatically “go away”. Early identification and intervention is key to reducing the symptoms of autism and having positive long term outcomes for people on the spectrum.
2) Autism is caused due to a curse on the family: Autism is caused by a combination of genetic and environmental influences. Autism is not caused by both parents working, watching too much TV, mental stress during pregnancy, unhappy home environment or any superstitions.
3) Children with autism should be in special schools: With a good school environment and trained dedicated teachers, children with autism can study along with other mainstream children in regular schools. Inclusive education is internationally accepted as the best means of education for children with autism and other needs.
4) Autism is caused due to vaccinations: While in the past there were many doubts as to whether autism was caused due to vaccinations, today the research shows that this is not the case. It is important that parents do not stop vaccinating their children. Vaccinations do not cause autism
How has Sethu planned to celebrate Autism Awareness Month?
Lots of activities have been planned this year by the Sethu team to celebrate people with autism. On World Autism Awareness Day (2nd April) Giselle Lobo (Head of Inclusive Education at Sethu) and two supermums accompanied me on the Morning Show with Ayesha at Radio Indigo to talk about autism. Three young men with autism will be on air on the 3rd, 4th and 5th of April at 10 am to talk about themselves. The Sethu team has sent out messages to people across Goa to wear blue at their workplaces. We have reached out to enthusiasts (cyclists, runners, bikers) to organize events and wear blue. We have a quiz night and music night planned later this month. We have also written to various newspapers to feature columns about autism.
There has been a lot of talk about Assistive Technology (AT), especially in communication. What are some examples of Assistive Technologies, and how are they used?
People with ASD have different communication challenges. Some do not speak, some have limited speech. But the majority of them have a tough time conveying messages about their thoughts, feelings and emotions in a way that is understood by neurotypical people. At Sethu, using Assistive Technology – both low tech and high tech – can help people cross this communication barrier. We teach children to use pictures as a way of communicating as well as understanding what is being said to them. We primarily use PECS (Picture Exchange Communication System) (low tech) which simply put, is the process of exchanging picture cards between another person to communicate as well as understand. For example, if a child wants a break from doing an activity, he can give his therapist a picture card with a “break” symbol on it. If the therapist wants a child to keep her hands on her lap, she can show her a picture card that has the symbol of “hands on your lap” on it. We also use a high tech version of picture communication called ‘AVAZ’ which is an app based software on the iPad. It serves the same purpose.
Do ATs hinder a child’s natural ability to develop his or her own means of communication?
Many parents believe that ATs can hinder speech development because it will be “easier” for their child to use pictures rather than use speech as the way to communicate. Research, however, has indicated that people use the “most effective” means of communication available to them to interact with others. It is definitely much more efficient for people to use speech to communicate rather than AT. Assistive technology will not interfere with speech development. People with ASD who are meant to develop speech will do so. ATs actually improve communication and research is being done to try and prove this. What is definitely known, however, is that AT not only reduces the pressure placed on people with ASD to speak as the only way to communicate but also helps develop language and conversation skills.
Why would some parents not want to use ATs? How can we make this technology more accessible?
Very often, AT is introduced AFTER giving up on the hope that a person with ASD will speak. What this does, is create years of failed attempts at communication with parents, teachers, friends and colleagues. At Sethu, we have seen children resorting to challenging behaviours like throwing objects, hitting, biting and screaming as a way of conveying messages that seem as simple as “I am hungry”, “My tooth hurts”, “I do not understand what you want me to do” or “I am bored”. Messages that neurotypical people can communicate with ease. Hence, at Sethu, we view assistive technology as a supplement or alternative to communication rather than a wholesale replacement for speech. This choice is not between natural speech or assistive technology, but rather how to use it to support the development of communication. It is used as soon as possible so that challenging behaviours as a means of communication do not have a chance to develop.
Are there any prerequisites for using Assistive Technology in aiding communication?
The great feature of many ATs is that there are no intellectual prerequisites to use them. Sethu uses AT for all children with ASD regardless of their cognitive or language level. Using a multidisciplinary team approach, we gain knowledge about the child’s strengths and challenges, activities that the child likes and does not like, consider the social and economic situation of the family and then make a decision on what assistive technology will be used to support the child. Great focus is placed on teaching parents how to use these with their children so that the child has the opportunity receive many more hours of “training” and will have to be able to use AT in his natural environment. Through this, we ensure that children with ASD are not just seen, but also heard.
If you’d like to reach out and support Sethu personally or through your company, you can do so by visiting their website at http://sethu.in.