Most parents of kids with special needs have heard the saying that “God doesn’t give you any more than you can handle.” This typically is said as an affirmation of one’s strength and ability to handle the challenge at hand. In the early days of autism, when I was first told this, my immediate thought was that God didn’t know me very well.
Parents of kids with autism also get used to hearing “You’re so strong. I don’t know how you do it.” And while this is always said with the best intention, when heard over and over, it can reinforce to parents that they always have to be strong. They can never be weak or let down their guard. That is just not sustainable though.
I don’t know a single parent who would say that autism is a walk in the park. On the contrary, most would agree that it is the hardest thing they’ve ever done. Here at Seattle Children’s Autism Center, we see that families handle difficulties very individually for many different reasons.
Some parents come to their child’s evaluation with an awareness of autism and that their child has it. Others are shocked by the news of the diagnosis. Some have never even heard the word autism before. There are parents who eagerly ask for help, surrendering to the complexity of figuring out our complicated children. Others prefer to tackle things on their own, perhaps not feeling comfortable seeking assistance. Some parents immediately tell other family members while others have reasons for not sharing the news with extended family.
At times, as providers, we become aware of situations where it seems adversity has no quota. Sadly, there are, at times, tragic outcomes – a parent who opts out, leaving the family behind, a parent who takes his own life, a parent who is suspected of abuse or neglect. Clearly they have more than they can handle.
Recent cases in the news of parents arrested and jailed for suspected abuse bring this to the forefront. Upon first reading the headline of a child with autism who was kept in a cage, I thought, “What kind of parents put their child in a cage?”
I caught myself, realizing it was a knee-jerk reaction to the sensational headline. Why is that we are so quick to pass judgment on total strangers? It seems we have gotten more critical of others as we increasingly are invited to share our opinions and thoughts quite publicly on social media. With the stroke of a key, we can like or unlike, friend or un-friend, give a thumbs up or thumbs down, vote someone on or off the island or the stage, and reply with the kindest or cruelest comment to just about anything posted anywhere. But that is a blog in itself.
After reading more about the family in the article, I saw things through a different lens. I opened my mind to the possibility that the parents may not have intentionally done wrong. Perhaps their son had gotten older and stronger and his behaviors more challenging. Maybe it wasn’t intentional abuse but for his safety or the safety of elderly family members or younger siblings. Perhaps with the kennel-type structure, they could keep an eye on him, make sure he was safe. Maybe the child felt secure there – our kids sometimes like to hunker down, burrow in small spaces.
The bottom line is that I don’t know all the facts and am in no position to judge. And judging doesn’t help the problem at all.
In tragic situations, parents are typically the first to be scrutinized and criticized for not getting their child help. A simplistic response such as “why didn’t they just get help?” is often offered up by those who have no idea about the high demand, lack of insurance treatment coverage and efficacy for the most challenging aspects of autism. There is no definitive treatment for all, nothing that makes the stubborn challenging behavior completely go away. At best we often get a reduction of extremes and management of crises.
Was this a family who fell through the proverbial cracks? What missing supports and services might have made this family’s life a little easier”? Clearly this was a family that had more than they could handle. If you are struggling with the challenges of autism, reach out and ask for help. Call a family member, a neighbor, your church, your doctor, or your child’s providers. In an emergent situation, call 911. Don’t suffer in silence. You’re not alone.