Come To The Dark Side, If You Dare
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 and the Autism Awareness theme saying they do not need to be cured. Warning, this post is going to not be cute, fluffy or even PC. This is my rare true feelings.
Let’s Start With The Cure Debate
There are many parents who say that they wouldn’t change their child. That if you ‘cure’ their Autism that you would be changing who they are. My thoughts?
Well on that I say bullshit! Yup, I said it. If you or your child doesn’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 and see my last comment.
But to say that this would change your child doesn’t make sense to me as Autism is NOT a person. Autism is NOT who my child is. Autism is something he has. It does not define him or his personality. This is no different than saying a person with cancer is cancer. The cancer does not make who that person is. But cancer affects the person, their health and how and what that person can do.
Again I understand this is not going to win me popular points but this is something I need to say. For my own benefit and to help give a voice to others who share this view.
The Other Side
So let’s talk. Truthful talk. About the other side of autism. The side that the media rarely shows. The side that shows like Sesame Street with their new character Julia doesn’t even skim the surface of. I call it the dark side of autism, and it’s time to shed some light. For people to see what autism looks like for others. 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: an 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. Let’s have some real talk about the rest.
What about the parents that are diapering their teenagers? Doctors recommend that children are typically ready for toilet training when they show an awareness that they’re wet or poopy, can pull their pants up and down, and are comfortable sitting on a toilet. These signs, while appropriate for typical children, may be irrelevant to a child with autism. There is almost no literature available on training the older child with autism.
Traditional children’s books all use the potty chair to teach toilet training. Animated characters on videos do not explain the elimination process or show exactly what to do. There are also other factors that come into play for children with autism: sensory issues, gastrointestinal concerns, anxiety, resistance to change, and often no social motivation to please the parents. Not all children will work for praise or rewards. Some children stand up to have a bowel movement and a change in the elimination position can cause difficulty.
My son is 10 years old as of this update and has no interest in using the bathroom. Add the fact that traditional pull-ups/overnights only go up to a certain weight, now we have to go through medical supply companies. Most private insurance will NOT cover the cost. So you either pay $75+ for a few that won’t get you through the week or fight to get through the paperwork for secondary insurance or state insurance to help with this cost.
Harming Self & Others
Did you know there are many distressed children who are 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 even ended up in the emergency room.
Studies show about one in four children with autism hit, scratch or otherwise hurt themselves. These individuals don’t necessarily express anger, fear, anxiety or frustration in the same way as other children. They can sometimes express these feelings through aggressive behavior towards other children or adults. For little children, we may intervene physically and stop these things from happening. But every “child” reaches an age or size when that no longer is an option. And we too get older. So what about the elderly parent or grandparent?
For the families that are dealing with it, ‘fecal smearing’ or ‘poo smearing’ is a topic that cannot be ignored. It’s uncomfortable for most parents to talk about and is emotional to deal with. Anger, frustrating and defeat are but a few of the emotional swings many experience dealing with this issue.
If you ask an occupational therapist, sensory integration strategies will be the recommended solution. A clothing manufacturer will suggest compression onesies and overalls as to restrict access to feces. A physician will look for medical causes. Sometimes one of these will be the right solution and sometimes ‘poop happens.’
Our son due to an overflow in the pull-up, for example, will end up with poop all up his back. This will usually end up on his clothes, his bed if he was sleeping, the carpet if he was playing in his room and sometimes the walls or toys as he tried to wipe what was on his back (similar to an itch) and now stuck with poop on his hands which he wants off. It is not an easy job to stay calm and clean him and the rest of the mess up by any means. And my heart goes out to the parents who have to daily clean walls, furniture, and carpets as well as their child.
I actually chuckle to myself when parents complain about their kids not sleeping right, usually around the time change of Daylight Savings. I not laughing at their ‘pain’ but the idea of if they only knew.
Between 44 and 86% of children with autism have a serious problem with sleep. Over half of children with autism have one or more chronic sleep problems. Also, many adults on the spectrum likewise have difficulty falling asleep and staying asleep through the night. These sleep issues tend to worsen behavioral challenges, interfere with learning and decrease the overall quality of life.
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 family? Autism has been termed an epidemic. It’s “actually a family epidemic,” according to Cecelia McCarton, MD, founder of The McCarton School and the McCarton Center for Developmental Pediatrics in New York. “The ripple effect that happens when you have an autistic child,” she says, “is astronomical in terms of family dynamics.”
- 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?
- Attention. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put stress on their marriage, other children, work, finances, and personal relationships and responsibilities.
The results of all these have even lead to:
- Divorce. Reports show that the rate of divorce among parents with autistic kids 85%!
- Abuse. Studies have shown that about 20 percent of autistic children are abused.
- Siblings of children with autism tend to struggle with anxiety, depression and social difficulties.
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. Adults with autism are at an increased risk for diabetes, depression and a number of other health problems.
They include, but are not limited to, the following:
- Feeding issues
- Attention-deficit/hyperactivity disorder (ADHD)
- Obsessive-compulsive disorder (OCD)
- Bipolar Disorder
All which brings more stress, more needed medicine, and more 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 volunteer 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.
Support And Not Debate
So now that I shared so raw feelings let’s come back together. Every year around April I see the same debate. Those for a cure and research and those who don’t want to be cured and proud of who they are.
Here is the thing. There are two sides. Some can live a great life while some barely are living. Some can advocate for themselves and others can’t communicate at all. Every person is different. We all have different personalities, likes, wants, and ideas. And we all have the right to these. So matter what side you’re on, remember what we all do need: support and understanding.
That is what this month is about. Not attacking each other.
If you don’t want or need a cure-great! If you or your child is on the darker side where life itself is a struggle and you know there is more (I’m there with you) then keep searching.
But please, don’t put anyone down for feeling the way they do and instead support and help each other.
I started blogging to share what’s out there. The resources, the events and to bring people together. Cure or no cure. Autism is here. It is different for each person but each person does have the common need for acceptance and understanding.