When goals in profound autism are set too low

3 days ago

3 min read

People can speak about a child's future as though it has already been mapped out, even when a shared way of communicating is still being developed and much of the child's day is spent trying to cope with their surroundings. Assessments are made of what they will learn, what they will be capable of as an adult and what their therapy and support should focus on. A parent listens and tries to understand how much we can really know about the future when we still struggle to make sense of how the child functions now.

When a preliminary assessment stays in force

Assessments are needed to plan support. The trouble starts when a preliminary assessment begins to follow the person around as a final truth, and every new member of staff reads it before even getting to know them. Over the years, the view recorded on paper can become so familiar that nobody stops to think about what it was originally based on or whether things have changed since.

What refusing a task tells us

There is a great deal of uncertainty in assessing what a child with profound autism can do. Refusing a task, leaving their place or not answering does not tell us what made the task difficult. The instruction may have been unclear, there may be no suitable way to respond, or the environment may already be so overwhelming that the child has no energy left to try something new. Unless these possibilities are explored, practice can be abandoned before anyone has properly tried to find out what the child could do with support.

An ambitious goal can be a small thing

At the same time, aiming higher does not mean demanding more from the child for longer. Excessive demands can turn practice into a series of failures, until nobody knows whether the child is learning a skill or simply learning to endure the situation. An ambitious goal can perfectly well be finding a workable way for the child to ask for help or refuse, and giving that as much time as it takes. It can make more of a difference to everyday life than a long list of tasks they complete under an adult's constant guidance.

Everyday skills change lives

Everyday living skills should not be dismissed either. Taking part in getting dressed, finding washing easier or expressing a choice can make an enormous difference to a person's life. The problem comes when nothing else is offered alongside these skills because someone once decided that this was probably the limit of the person's potential. Someone who needs a great deal of help also deserves opportunities to try new things without every attempt being expected to prove that they will eventually become independent.

Hope as a way of keeping going

For a parent, hope can be an important way of keeping going, but it must not become yet another demand to perform. A child's development cannot be guaranteed by a family believing hard enough, practising more or finding one more method. Parents can put in an enormous amount of work and their child can still need round-the-clock support as an adult. That does not make the work pointless or the family a failure.

Revising goals in both directions

We should be willing to revise goals in both directions. During difficult periods, practice can be eased back, and as new skills emerge, we can think about what would be meaningful to try next. What matters is that the plan develops with the person, rather than the person having to spend the rest of their life fitting into a plan written at some point in the past. We do not have to promise how the future will turn out, but we do not need to close it off before seeing what opportunities the right support can still open up.