Testimonial: Autism impacts parents’ lives too

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1 out of 150 children in Flanders has autistic spectrum disorder. It does not only affect the child’s life, but also has a huge impact on parents’ lives. In this article we have a testimonial from mom Evelyne about her son’s diagnose.

Autism is a journey I never expected, but I sure do love my tour guide

An autistic spectrum disorder (ASD) is a developmental disorder in which information processing in the brain is impaired. ASD begins at an early age and plays a role throughout life. It affects many aspects of life, both for the child and those around him. Often people use the term autism when they actually mean an autistic spectrum disorder. (Classic) autism, however, is a form of ASD. Other forms are: Asperger’s syndrome and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified).

Evelyne (37) is a proud mom of Rune (7). Since last year the school’s pupil guidance noticed that Rune might be suffering from autistic spectrum disorder (ASD). Although that observation scared mom Evelyne for a while, a lot is falling into place.

“It is not always easy on my husband and me. There’s a lot of things we need to understand and take into consideration in order for us to live and work in harmony with Rune. But no matter the diagnose or the level of work required, we love him so much!”

Regularity or nothing

“Rune likes regularity and wants certain things to be the same. Spontaneous changes or day trips, he has a particularly hard time with that.”

Before going on day trips, mom and dad have to inform him about every detail. These details aren’t just about what they are going to do exactly, but also about the order in which they are going to do it. This is not always easy, because sometimes circumstances lead to unexpected events or late changes. And these changes don’t work well with him and they get him easily upset or angry.

One of her biggest fears is that Rune might go too far in a tantrum as sometimes happens at home. At times such tantrums can be very challenging. And there isn’t much you can do, but to let it cool down.

It is striking that until today he has been very well behaving at school. “Perhaps this is because at school he has many different stimuli that can keep him busy or distract him”, Evelyne adds.

Fear and insecurity

Mom Evelyne sometimes worries a lot. These worries come mainly from insecurity and fear but also from a lack of understanding from people close to her. Sometimes she gets comments about his individual behavior. But Rune chooses who he likes, who he wants play and have fun with. She can do little to change that (and neither can he). Comments from other people about this make it harder on her, because she feels misunderstood.

“Every child loves different things. For Rune it’s Pokémon, Lego, PlayStation etc. When you talk to him about these toys, he will give you more attention!”

So autism is not just a roller coaster for the child in question. It is also quite challenging for the child’s parents. Very many parents constantly switch between feelings of helplessness and uncertainty. So we must not forget that behind every child with autism there is also a couple of parents with feelings of anxiety. And they could use some help, support or just understanding.

This article has been written by @ANGELO VERO

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