4 Issues for Parents of ASD Children
We Want Our Children to Fit Into a World They Don't Understand
Kindness, Understanding, and Acceptance Should be Basic Rights for Everyone
If you have a child with autism, then you understand the super-human abilities that you need to parent them effectively. We wear many hats in our quest to help them get ready for the real world. We must be therapists, neurologists, preachers, and counselors to our children, but raising our awesome kids is not the biggest problem we face. Here are the top four issues that parents of ASD children face every day.
#1 Being Judged: The most difficult thing that we face as ASD parents is the feeling of judgement that comes from people who do not understand autism or who do not readily accept it as a diagnosis. Autism comes in many shapes and sizes. The spectrum can be easily seen in some children and be more elusive in others, but it’s there. Family members, close friends, and even strangers on the playground are sometimes quick to make assumptions regarding our child’s behavior. I’ve gotten “that look” from a stranger when my ten-year old ASD child had a meltdown in Target. The look that plainly said, how can you let your child act like that? I’ve had family members tell me that I’m overreacting about his autism or berating me for my parenting techniques. It’s tough when you begin to question yourself and wonder how the rest of the world can’t see it like you do. The reality is, most people don’t see what goes on behind closed doors. As parents we are dealing with emotional explosions, extreme feeding issues, and suicidal feelings from our children, and this is every day. They have the reactions that most typical children have, but find it difficult to filter their emotions and are generally much lower on the emotional scale. Our children cannot navigate the world around them, they don’t fully understand it. Their tantrums in Target can be the result of overstimulation or their inability to understand simple concepts like, no, we can’t buy twenty jars of peanut butter. Every day, we walk the line of wanting our children to fit in and knowing that they don’t. Our biggest wish is for others to understand and except them.
#2 Isolation: Because, for may ASD parents, going out into the real world can mean judgements and frustration, we feel isolated and alone. I have a great group of friends but I hardly ever see them. Even if you’re lucky enough to find another mother with an ASD child to bond with, chances are that the two children may not be compatible. When our own families can’t accept the diagnosis, that makes the isolation worse. There is also the issue of having to constantly think through the consequences of social settings for our children. If we let them attend a birthday party, will they become too overstimulated? Will the food served at the party bother them? Will the other children readily accept him or will he come home sad? Sometimes it’s just not worth venturing out. We work hard at coaching our children to fit in. It is exhausting for us and for them. Even as my son seems to assimilate in certain social situations such as an occasional party or at school, there is usually a backlash. From the exhaustion comes anger and frustration. This is the piece that I get to see.
#3 Being Overworked: As parents of ASD children our time is rarely our own. We must parent our children differently and it takes time. Our children need every inappropriate behavior explained. Every time we have to say no, there needs to be a lengthy explanation why. It can take weeks to get a child to understand the simplest social concepts, or understand that you weren’t lying when you were estimating the time of his favorite TV show only to see that you were an hour off. It is exhausting. Add in the mountain of paperwork and phone calls to insurance companies, schools and therapist, just to get the accommodations that your child needs. This can be a constant battle and a full-time job. We are constantly running to the rescue from bullies or social challenges, and find ourselves constantly looking for solutions that will work. And this is all for one child. If you are the parent of two or more children, the load is heavy. Many days, all that I look forward to is going to bed.
#4 Depression: With all that we have going on, it’s easy to fall into depression. Though our children have therapists, many parents do not. There isn’t time or there isn’t the money to think of ourselves. The epiphany is that we often feel as our children do. The isolation and constant judgements can be overwhelming. There is a real hurt in being misunderstood as a parent while knowing that you are doing the best that you can. We get a real glimpse into what an ASD child goes through and it makes us understand them on a deeper level.
As the parent of an awesome fifteen-year old boy, I have developed super-human strength. I have been through the cycle and have chosen to believe that I did okay. I now understand that not everyone will get it. For those who do, they are a great source of strength for me to tap into. I know what my son needs and I am happy to be his advocate, even as he learns to advocate for himself. What I need to do now is to advocate for those moms and dads who are in it over their heads. All we ever wanted was to be heard and acknowledged. Realize that you can never know the real truth of someone’s life until you walk in their shoes. Stop yourself from making judgements and find kindness and understanding in your heart. If you know a parent facing the challenges of a special needs child, reach out and be a good listener. Sometimes all we need is a place to vent.