The symbol of the nationwide movement to spread awareness for those affected by Autism Spectrum Disorder (ASD) is the puzzle piece. This image is meant to reflect the mystery and complexity involved in dealing with ASD. Every puzzle piece will be different, so it accurately represents the diversity of every individual diagnosed.
However, it seems to be all too easy to forget that these different puzzle pieces do not simply stand alone, they are part of a bigger picture – a family.
There is a lot of information out in the world about the struggles and trials of the individuals diagnosed with an autism spectrum disorder, the social awkwardness, ostracization, difficulty communicating and single-mindedness. But there is not nearly as much about the struggles and trials of the family that support these individuals. This article is a voice for the families.
It’s not easy growing up with a sibling on the spectrum. Due to the high-stakes demands placed upon parents with an autistic child, many of the other children in these families may feel ignored or neglected as their parents work to provide the additional support and guidance needed by the one child.
Julia Tyler as a parent of three children, one being autistic, can give a first-hand account of these struggles.
“There is no real right choice when it comes to parenting, you can do everything ‘right’ and still manage to screw up your kids.”
Tyler and her husband Alan have been married for twenty-five years and have made every effort to provide a stable home for their children. Each child has their own special needs, some need more one-on-one time, others need encouragement and affirmation. The real struggle is figuring out which child needs what and then how to best give it to them, it is trying to find that mythical concept of balance.
An additional struggle faced by this family was that, as first-time parents, Julia and Alan thought everything seemed normal and no-one told them otherwise, saying, “When my son Robert was a baby he was a funny, high-spirited kid, as soon as he entered school everything changed.”
They relied on the expertise of those who were supposed to know, and yet it still didn’t help them. Robert wasn’t officially diagnosed as high-functioning autistic until he was fifteen-years-old, this delay caused a bright kid to feel like something was wrong with him. His social awkwardness prompted the other children his age to make fun of him and he, in turn, began to reflect the pain that was inflicted on him.
“Honestly, we thought we had broken him,” said Tyler.
Alan, Julia’s husband says that he feels frustrated at his inability to connect with and understand his own children.
“As a teacher, I deal with kids all day long, and yet I come home and it’s just not quite right. Everything I learned while studying to be a teacher, all the strategies and methods for dealing with kids, were ineffective in my own home.”
Julia says that she believes this is because he doesn’t know how to turn off the ‘teacher mode’ and just be a dad. He forgets that sometimes being a dad means just letting the kid get away with something rather than teaching them a lesson. Sometimes it’s more about the love, a home should feel like a safe place where everyone can be who they are without being attacked or criticized, even constructively.
Robert was diagnosed with what is formerly known as Asperger’s Syndrome which is now just considered to be the high end of the autism spectrum, leaving him with little outside indicators of his condition. Intellectually, he is extremely bright with an IQ of 169, yet he struggles with the concepts of social norms and doesn’t understand how to effectively communicate with others.
Tyler said, “It took me working towards a degree in psychology to really learn how to understand him. Through learning about all the different visual and verbal cues that you kind of just pick up as a mother and finding out what they meant, I was finally able to crack his code.”
It wasn’t until later that Tyler realized how much of an impact giving so much of her time and attention to her oldest son, had made on her other two children.
“I think it hurt my youngest son the most. My daughter has seemed to bounce back okay, she is a bit of a perfectionist and can be pretty controlling, I think that may have come from her trying so hard to be perfect all the time, like she felt that she had to be perfect to get any attention or maybe even to make up for her brothers acting out. But she makes it work to her advantage, she has perfect grades in college and works full-time. But my baby, it twisted and turned him all up inside.”
Tyler attributes her youngest son’s troubles to her having to work outside the home when he was really young, and then as he grew up she thinks that he probably felt left out when she would spend hours after work helping Robert.
“It’s not that I didn’t give them any attention, me and James had our designated snuggle time every night before bed, and me and Eliza would have our mommy-daughter dates where we would just run away from the boys for a while. Robert just seemed to need more help than they did.”
As she said, there are no right answers. No one can say that she did any of her children wrong and in fact, she and her husband appear to have been excellent parents They loved and cared for each of their children and made every effort they could to help them to succeed. But children are incredibly impressionable, and they know when things aren’t right.
When asked what he felt James replied that while he loves his brother, he doesn’t always like him.
“He’s really hard to live with sometimes, and I know it’s because of his Asperger’s but that doesn’t really make it any easier and sometimes it really just feels like an excuse for him to get away with acting like a jerk.”
Tyler feels like it is her fault that her younger son holds such deep-rooted anger against his brother and that it isn’t much about Robert at all but about her. In a tearful moment, she revealed that James had told her once that he didn’t feel like she’d ever really loved him at all.
“There has been so much anger in our home, and much of it came from just not knowing. I didn’t know how to help Robert because I didn’t know what was wrong and through not knowing I managed to hurt my other kids.”
While there are currently many more resources today than a few years ago, most of these are geared towards understanding and accepting the one puzzle piece rather than supporting the entire family. Of course, it is important to support these individuals for who they are, as James said it really isn’t fair. There needs to be more support for families as a whole and for the other family members, specifically the other children. Parents will always need additional help and support to provide for their child with special needs, this is true and acknowledged, but the siblings who are also still only children themselves don’t understand why one child gets so much more attention than the others. And no, that doesn’t just hold true for positive attention.
James admitted that he would cause trouble or take the blame when things went wrong because at least he would be noticed. It didn’t matter that mom and dad were angry or yelling, usually because he had lied rather than at what he had initially done, it didn’t even matter who they were yelling at, it was just enough for him that he had been seen. In a similar vein, Eliza has often been heard to say that she is really good at being invisible. Whether this is true or not, she genuinely believes that people simply don’t notice her.
Despite the fact all three children are now adults, some effects have lasted through and when visiting home from school Eliza says that she is so excited to see her family all the way until she walks through the door. Then at that moment the bubble bursts and she is reminded of all the underlying resentments and the unresolved fights that are continually being rehashed.
She says that she feels completely out of control when she comes home, “It’s like I am a completely different person, I don’t like how angry and controlling I can be but I don’t really know what to do about it. I miss my family like crazy when I’m gone, but I don’t think they’d ever believe that based on the bad habits that I fall back into each time I come home.”
Each family is unique, and they are going to face wildly different circumstances, but one thing is true – everyone deserves to feel loved and the last thing that any parent ever wants to hear is that their child didn’t think they were loved.
And no child ever deserves to feel like they are invisible.