Parents and autism: a difficult balance

One of the most beautiful things about being a person with autism is that you never stop improving.

For direct information I know that adults with autism, which maybe 40 or 50 years ago have not received any specific education, may, if followed correctly, start learning and continuing to do so.

This possibility, which is given by proven educational techniques (which have been existing, some for decades, but applied fairly generalized only few years ago),  and allows very young children to have unhoped improvements until five or ten years ago, has a   “dangerous ” turn that in reality  frequently concerns mothers, families with presence of children with autism.

Just because you know, in fact, that, through educational stimulation constant improvements are possible, very often the mothers embark on a race against time, hoping to be able to teach their child many things as possible, in a desperate attempt to get him as close as possible to normality.

If this work is done with balance and serenity the mothers of autistic children become  some incredible stakanoviste and often the best therapists for their children.

But when the work with their child gets the upper hand over the entire life of a person and a family, then the equilibrium vanishes and, very often, with the balance vanishes also serenity and family life.

Not only there is a loss of  normal expectation for the future, but they are robbed of those things, little but important, such as interests, passions, entertainment, leisure, life of social relations.

Cost-benefit analysis, pass me the term,  should be done. Not immediately, of course, not when a family has just discovered that she has an autistic son and she needs time to absorb, rework, accept.

Not immediately, but after some time (not measurable because subjective) this is absolutely done.

What do I mean by cost-benefit analysis?

I mean that every family has to think and to understand when to dedicate time, energy and, why not, even money for a specific project of their autistic son, and when, on the contrary, that time,  energy and money should be spent on one or more other members of the family, equally; no one can tell us, but it’s important to decide how much time to devote to the autism projects themselves, sacrificing other children or the husband.

This balance can be decided exclusively by the family. No psychiatrist, psychologist, educator, therapist will never tell us how to work with and our son.

They can tell us how, can of course also tell us that the more we work with him, the more we will get results.

But they will never have the right to go further. Why we have to decide over us.

It’s the same as when the tennis coach of my non autistic son Nic (makes racing with good results) pushed us and suggested to make him  play more, to get even better results. After that, with him and his father, we made a balanced analysis of the situation, made up of school, music, scouts and friends, and we decided together that the hours per week devoted to tennis were the right ones for him. Of course, playing more would make him playing even better, but his life would have less balance. What for us is balance.

Cost-benefit analysis, in fact.

Elisabetta Tonini