Parents of those on the autism spectrum obsess over one question — “What after us?” In most cases, the chilling thought is projected deep into the future. The pandemic has brought it awkwardly and uncomfortable close.
Kavitha Krishnamoorthy, co-director of Thiruvanmiyur-based The CanBridge Academy, which offers a “space for young adults with autism to explore skills”, explains: “What the second wave is really bringing home to the community — parents and professionals working in the community — very clearly is the possibility of the death of the primary caregiver.”
In groups run for the community, there are messages that bring such dismal tidings — at least one a week, she points out.
“I think the whole thing has given rise to the question: ‘If the primary caregiver, mostly the parent, were to pass away, then what happens? Almost overnight, there are just not enough arrangements in place by the family. I think there are two things that are coming up. One is that families need to really start looking at the arrangements they are making for their children when they are no more — however unpalatable or dreadful that may seem. You know, this is something parent groups are constantly talking about, but suddenly it has come right up front, hitting you in the head. We talk about preparing our children for everything: for inoculation, holidays and many other things. Preparing them for your death is daunting.”
- How does the death of a loved one impact someone on the spectrum?
- “Autism is a spectrum. So, how different people understand things may be different. Some of them may understand that this person is gone and will never come back. For some, it may be difficult to comprehend why someone was there yesterday, but not today,” says Kavitha Krishnamoorthy, co-director, The CanBridge Foundation.
- “There is no simple and one answer to this question. It depends on so many things. Some of them have understood that there is this illness and that they are not able to go out, to their regular schools and colleges. That they have understood to some extent. That the nature of their education has changed. That they are doing online classes.”
Kavitha lists the must-dos.
“Legal arrangements need to be made. Care arrangements need to be made. Financial arrangements need to be made for families. That is something all of us have to wake up to. This is really a wake-up call. The second thing that it is bringing to the forefront is just the paucity of short-term and long-term residential care facilities. When these kind of messages come, it is not that you can immediately say that these are four of five places that the family can look at putting them there.” Kavitha underlines another situation where well-intentioned but ill-informed people express a willingness to adopt children handicapped by the death of their caregivers.
“It is important to make the main point that for children below 18, it has to go through the government. Otherwise, it would be illegal adoption. People are very well-meaning and well-intentioned but they need to know that there is a process in place for the below-18 and the simplest way for people who want to do something is call 1098, which is the Childline, the national helpline number, where there is a process in place. It is vetted. Why we need to be careful with children is because of the whole illegal and child trafficking angle that comes in. I think it is important that people realise that they may be well-intentioned and well-meaning but should not get into just forwarding and passing messages around. Really, the responsible thing to do is contact 1098. Or, the police station. Or, the district child protection officer. For a layperson, it is easiest to call 1098 really.”