Alexandra and MichaelMichael cooks a meal

We spoke to Alexandra, the mother of Michael. Now 26 years old, Michael was diagnosed as autistic at age 2. He lives at home with his parents and younger siblings. Michael has high-support needs, with significant sensory and communication difficulties.  He also has medical and behavioural challenges*.

Despite those challenges, Michael exudes pride in his work achievements. He manages many parts of his day independently, with good supports in place.


Alexandra argues strongly that meaningful work does not have to be paid employment to be of value


Early Years

Michael attended special schools and Alexandra says that little attempt was made to stretch him, that he was “stuck doing shoebox tasks”. (These are literally boxes containing everything needed for a complete activity including visual instructions. They may relate to numeracy, literacy, life skills, fine motor skills, etc.). Alexandra says he was kept at these same repetitive activities for months at a time. He was not allowed to join in other activities or groups as he did not conform to the rules and routines of the school and, at that time, staff did not have the expertise to support him. Michael was therefore given limited access to facilities and learning opportunities outside the classroom. (Alexandra notes that the school has now changed its approach. There have been improvements since Michael left and they have become more aware of how to support autistic students.)

Alexandra was regularly told that he was “not ready” to move on to other activities, but she found this approach frustrating:

“…  he can do so much more. I once showed a video of Michael measuring out butter and flour for baking. I was asked whether he could do addition and subtraction, or understand the concept ‘less and more’. We tried teaching him those concepts for a long time, but although he understands single concrete examples, he is not able to generalise his understanding from a specific instance to abstract concepts..  But to me, he only needs to know that when he adds the ingredients onto the weighing scale, the number goes up and vice-versa. It is assumed that an individual needs to understand the concepts of subtraction/addition, more/less before they can take on a task like measuring - which Michael has proven there is no need to do. But he was not allowed to move on to other tasks because he didn’t understand these supposed pre-requisites."

We need to re-examine the way we judge and value skills. The rhetoric about letting each individual reach their potential – there has to be more creative ways to attain this than through a very singular rigid path.  Sometimes I wonder who is the rigid one.

The benefits of meaningful work

Alexandra thinks it does not necessarily make sense for Michael to be at a formal workplace. That would require him to have intense support and significant adaptations to his work environment to address his sensory needs. It may not be of relevance to Michael either. For him, it would be better to look at work as meaningful occupation. To be occupied. To have a life worth living. Not to sit at a corner doing nothing, waiting to be served.  She says:

“…in wider society household activities are not widely valued as ‘work’. But I have always believed that the home should be everyone’s first workplace.”

She values the ideas of Dr Luke Tsai, a US psychiatrist and father to an autistic son who Alexandra heard speak when Michael was young and who helped shape her views. Dr Tsai said that for every skill attained through household chores, there is a job that requires that same skill.  Alexandra agrees that work does not need to involve paid employment for these skills to be of value:

“What’s the point of working in a laundrette, yet be unable to wash your own or your family’s laundry?”

Michael’s days are full. Alexandra uses visual schedules to help Michael structure his day and to offer choices. Among the many things he does, which includes the family laundry, he can choose and cook his own food, and he helps with the preparation of family meals. Alexandra says “he definitely is the only one in the family who washes his own dishes after each meal and put his own clothes away after they are washed!”


By giving Michael choice and opportunity, Alexandra believes his life would be filled with dignity, meaning, and independence to the best level that he can possibly achieve


Michael does not need to earn a salary to be of value. His contribution is much valued in the family.

We finish with Alexandra’s promise to her son, to have:

“A life worth living:

- With the maximum level of control over his life

- Filled with genuine choices and interest

- A balance of work and play

- Surrounded by people who love him”

 

* Alexandra is using the definition proposed by the Royal College of Psychiatrists et al, 2007, College Report CR144, Challenging behaviour: a unified approach:

“Behaviour can be described as challenging when it is of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion.”