Measuring special needs

DR RADICA MAHASE

SHIVA is a 15-year-old boy with autism. When most people meet him for the first time they usually comment that "he doesn’t look like anything is wrong with him." He is a very talented musician, he attends a prestigious secondary school and he excels in his academic work. He plays football and he limes with his friends. He has a good social group and he communicates easily with everyone.

Matthew is also a 15-year-old boy with autism. He doesn’t attend any school because he cannot function without constant care and attention. He needs help to eat, go to the toilet, shower and change his clothes. He cannot read and write and he doesn’t communicate verbally. What both boys have in common is their sensory issues. Shiva has issues with bright lights and loud sounds can be painful for Matthew. Both of them get regular meltdowns and have very sensitive taste issues so that they only eat a handful of food.

When Shiva was diagnosed his parents were told that he is high functioning. According to his mother, “The doctor said that Shiva was okay because he would be able to do everything, we just have to spend a little more time on him. One therapist told us that he didn’t have "bad autism" and that we should be happy we can work with him and he will be okay. The thing is, although they all say that he’s high functioning, our son struggles so much on a daily basis.

"He does well in school but just sitting and studying can lead to meltdowns, he struggles with writing and he cannot eat most food because of sensory issues. If he enters a room and the lights are too bright he will get meltdowns, we have to carefully chose his clothes and remove all tags, etc because of sensory issues. It takes a lot of effort to work with him, to give him the therapy he needs to get him to function at the level that he is at. And it’s constant work, we cannot stop focusing on his sensory issues because then he will not be able to attend regular school, socialise, etc."

Matthew’s parents also struggle on a daily basis to provide for their son. He needs speech and behavioural therapy; he needs special food and specific clothes as various materials irritate his skin. He cannot go to public places because the noise can be very painful. His father noted, “We do whatever we can to help Matthew. We spend all our money on therapy and we make sure that someone is with him all the time. We were told that he would most likely always be low functioning and will not really be able to do anything for himself.”

High and low functioning are just definitions, they are just terms used to measure an individual’s "disability". An individual’s special needs are usually evaluated using a series of criteria – characteristics, social interaction, and common behaviour and so on. Hence, these terms work well on paper as they define, categorise and evaluate an individual vis a vis what a "normal" person is supposed to be.

The thing is no matter how high functioning an individual with special needs that person still needs help; in the form of various therapies, individualise care and attention. Shiva and Matthew may display different levels of functionality but they both need therapy and care/attention to help them on a daily basis. Measuring an individual’s level of special needs only detracts from the fact that at the end of the day that individual does indeed has special needs. The focus should be on the special needs not the extent of it. The focus should be on what the individual needs help with to become more functional in society, not on how functional the individual already is.

It is unfair to judge Shiva and Matthew based on the visibility of their special needs. They both struggle on a daily basis and they both need access to appropriate therapies, educational opportunities, healthcare and other resources to help them to develop holistically. Levels of functionality should not be a measurement instrument used to assess an individual. Furthermore, it should not be used to determine access to resources. Ultimately, it is the responsibility of the government to provide the assistance needed to all levels of special needs whether high or low functioning; whether visible or not.

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