Adults with autism

DR RADICA MAHASE

GARY GRANGER is 41-years-old. He was diagnosed with autism when he was about age five. He is mainly non-verbal. Despite all the attempts made by his parents, they just could not find a school that could cater to his needs and he has been at home most of his life.

His mother Esther Granger is always looking for places to take him and activities for him to do so he attends all the events organised by Support Autism T&T. At the Autism Fun Day in April this year, she expressed her happiness that there was an event that she could bring him to, as he had not been anywhere since the beginning of the year.

Gary is just one of many adults living with autism in our country. Unfortunately, we are unsure of the exact number of adults with autism due to the absence of a sound prevalence study for TT. Sadly, there is a certain invisibility associated with this group. Hardly ever do you see them in public spaces. Sarah, age 35, said that she does not like to come out of her home because people stare at her. Anna, who is 31-years-old, said that she only goes out because her father makes her, but she does not like when people laugh at her.

For the most part, when we speak about autism we tend to think about children. Most people forget that these children grow up to be adults and that autism is a lifelong condition. While individuals are taught to cope through various therapies, etc., they continue to live with autism. Unfortunately, as a country we do not have much to offer these adults with autism, or other special needs as a matter of fact. Granger noted that there are not many opportunities for Gary. She said that the hardest part of raising a son with autism is not being able to find things for him to do and places to take him. That makes her feel helpless. She said, “My son knows everything, he is very aware of things, he takes care of himself and he helps out around the house, etc. All I want for him is to be able to have some place to go during the day, just for a couple hours; a place where he can interact with others and do things.”

Presently, the National Centre for Persons with Disabilities is one of the few organisations that provide training for adults with special needs. At a national level we need to add to the work of this NGO. We can do this by opening more training centres which will teach skills needed to function on a daily basis; centres which will provide sensory-friendly and stimulating activities for adult; and programmes where adults with special needs will have opportunities to interact and socialise.

Most importantly, we need to have conversations about employing these adults so that they can play a more active part in society. Many of them, Gary for example, are quite capable of working but are unable to compete for jobs because of their special needs. With special sensitisation campaigns, maybe even incentives to employers, we can create employment opportunities for them.

Also, as a society we need to start having conversations about safety as adults with special needs are especially vulnerable to abuse. How do we teach them to identify unsafe situations and how do we teach society as a whole to protect these special needs adults? We also need to focus on those adults with autism and other special needs who are seen as too aggressive and a threat to society.

These are the ones who never got the help that they needed while growing up and are now on medication, etc. There are cases where parents are unable to care for them because of behavioural issues. Some of them are patients at St Ann’s Psychiatric Hospital mainly because there are no other institutions to provide the care that they need.

These individuals need self-care training programmes and some kind of residential communities designed specifically for them. They need safe zones where they can live comfortable, fulfilling lives whether or not they have parents/caregivers with them. Really and truly, we have failed the adults living with autism and other specials needs in our country. We need to put things in place to rectify this immediately.

Dr Radica Mahase is founder/director, Support Autism T&T