It’s April and Autism Awareness Month. With this month come all the cute feel-good stories on the news, social media and even from those with autism themselves. Many have spoken against Autism Speaks saying they do not need to be cured.
Well on that I say bullshit! Yup, I said it. If you or your child don’t need one, great for you. Move on and leave the rest of us alone. If you’re offended by what I just said or the word ‘cure’ in general, that means you don’t need one.
For the rest of us, here is the other side of autism. The side the media rarely shows. The side that shows like Sesame Street with their new character Julia don’t even skim the surface of.
I call it the dark side of autism, and it’s time to shed some light.
Let’s talk about what some of our kids really go through. By definition, these are some of the symptoms with Autism:
Behavioral: inappropriate social interaction, poor eye contact, compulsive behavior, impulsivity, repetitive movements, self-harm, or persistent repetition of words or actions
Developmental: learning disability or speech delay in a child
Cognitive: intense interest in a limited number of things or problem paying attention
Psychological: unaware of others’ emotions or depression
Also common: anxiety, change in voice, sensitivity to sound, or tic
What many see or may be familiar with is individuals who do not speak, are sensitive to loud noises or bright lights, arm flapping and having meltdowns.
But what about the parents that are diapering their teenagers? I personally have an 8-year-old who has no interest in using the bathroom and finding pull-ups to fit is not easy. And what do I do when he becomes the 100+ grown teen or adult?
The distressed child who is self-harming? Hitting themselves with their fists, toys or by banging their head against the wall to the point they are literally bleeding. Or harming others. Some parents can not let their child with autism around any of their siblings for fear of the others getting hurt. Some parents themselves have ended up in the emergency room.
Or how about the smearing? The parents who have to daily clean walls, furniture, and carpets as well as their child.
Sleep issues? So many don’t sleep well and waking at 2 am ready to party is not uncommon. This causes not only issues for the child but the whole family becomes sleep deprived.
And speaking of the family, what about the strain placed on a normal family? First the financial part. The cost of medicines and therapies are crazy.
The stress part. Parents get little time away if any. Even just a few minutes to themselves is unheard of.
The worry. Parents worry that turning their backs for just one second could result in their child wandering and/or drowning. 50% of individuals with autism will wander or elope. We can never let our guard down as the concept of danger is not there for our kids. In fact, our children’s life expectancy is 36. 36! Our kids are 40 times more likely to die from injury.
And if your child outlives you (which they should) we worry about that too. What will happen to our child when we die? Who will care for them? Will they be treated with love and dignity or abused and neglected?
The results of all this have lead to divorce (Reports show that the rate of divorce among parents with autistic kids 85%) or even abuse of the child (Studies have shown that about 20 percent of autistic children are abused).
And as if all this is not enough let’s add the fact that 22% of children with autism develop epilepsy and 70% experience gastrointestinal problems. Which brings more stress, medicine, and worry.
So to everyone who thinks Autism is a gift and that a cure is not needed; I invite you to live just one day in the shoes of one of these parents.
Or perhaps reach out to family or friend who has a child with autism and offer to help them. Give these parents a break. Give them a moment where they don’t have to worry. This will not only give someone a well needed and deserved break but bring some reality and education to you.
© Autism, a DIVA & Dance
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