A child with a Neurological Disorder

Lately I've been battling with how difficult it can be to "spot" children with autism. They look like everyone else. They don't have features that distinquish them from other children. Here lies a big problem with people who are unfamiliar with autism and its characterstics, because they assume you have a neurotypical child until they act non-typical. Then I get the "oh, your child is a brat" look. People tend to think that if the ASD child was parented differently that the child would act differently or if the parent didn't use autism as an "excuse" for behavior that the child would be different.

This simply isn't true. Autism is a neurological disorder. My son has delays in communication and social interaction. His behavior is repetitive and his interests are narrow. We don't know what the future will hold for him. It is a big unknown but we think he has a lot of potential. Otherwise I wouldn't have fought to keep him in the least restrictive environment at school. I wouldn't have learned about advocacy or the rights of my child. I wouldn't have a stack of autism books and magazines on my nightstand.

Recently a friend asked what book I read last. I had to think about it. I've only read advocacy and autism books over the last year. My entire world is surrounded with how to better his life and that of our family. My son has hypotonia, PDD-NOS, severe SPD, PICA, and a bicuspid aortic valve on top of all those other lettered labels. He also has several diagnoses involving his eyes. The kid has several hurdles to overcome. We have taken him to hippotherapy, aquatic therapy, occupational therapy, speech therapy, numerous evaluations and assessments. He attends social skills training daily along with weekly occupational and speech therapy. He is on a gluten free and mostly casein free diet. He can't eat lunch at school because the cafeteria is too noisy and busy. It is impossible for him to concentrate on eating while he is overwhelmed by the stimuli. I can't imagine going through a stressful day at school without eating every day and still keeping myself together. He doesn't write well due to his hypontonia. He was also bullied last year and lost a great deal of confidence. I can not disipline or parent him like a NT child. Well, I could but it wouldn't work. To someone outside the ASD world, this might sound foreign. Delaying discipline is confusing. Typical punishment doesn't work for him. Sometimes I am able to withhold an item but even that doesn't have an effect because it's too long term for him. It doesn't have the same effect that it would for a NT child. Positive reinforcement works well but that is not always an easy way to parent because autism is draining. It drains our finances, our energy, and maybe even our sanity. The punishment for something has to fit the "crime." If he purposefully writes on a desk at school, he needs to clean it off. If he hits a sibling, he can no longer play with that sibling. If he breaks something, he has to fix it or find a way to earn money for a new one.

It's a different world for the child with autism as well as for the parent. My hope is that with more parents speaking out, more people will understand the 1:88 children out there who are diagnosed with ASD.