I do not have a child with autism so I don’t know from experience what it is like to live 24/7 with the joys, frustrations, hopes and fears of a parent whose child is on the autism spectrum. So, I guess that if I remember anything from my very distant Epistemology classes, my thoughts about this are operating somewhere between knowledge and belief. While I do not know the absolute “truth” about this parent-child relationship, I have talked with hundreds of parents of autistic children and I think that I have developed not only a great empathy for what they are dealing with emotionally and pragmatically as a parent coping with their child’s disorder, but I also have gained a fairly accurate true belief of the parenting and social pressures that they encounter daily as a parent with an autistic child. Â
There are certain words to a parent that are numbing and devastating at the same time; “your child has cancer”; “your child cannot hear-she is deaf”; “your baby has a congenital heart defect”; “your baby has Downs Syndrome”. Nothing can prepare a parent for the shock of discovering that there is something wrong with their unborn or newborn baby. All parents want healthy, perfect children and to be told that something is wrong or different with their child can be overwhelming. In several studies measuring parental stress during pregnancy and birth, when parents were first told about their child’s having a disease, condition, or difference, they said it seemed like the end of the world and everything looked very bleak…hopeless and helpless. Under these conditions, parents who were looking forward to the birth of their baby suddenly had their joy of impending parenthood turned upside down. The excitement of planning for the birth of their baby disappeared and was replaced with fear and anxiety.
Consider this- 1 in 59 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring and the incidence is almost 4 times more prevalent among boys (1 in 42). The words, “your child has autism” are just as devastating for a parent to hear as the dreadful words above, but the dynamic is so different. Autism is most frequently not immediately identifiable at birth. A usual course of diagnostic discovery in the family would be that the parent begins to notice little developmental inconsistencies or delays as the child gets to be around 14 months old. Someplace between 18-30 months the parent may be alarmed that their child seems to not be talking or is delayed in language acquisition, is slow to warm up to people- including mom and dad, does not seek or hold eye contact and seems to be irritable to sensory inputs of any kind. In some cases the child will be developing within typical developmental markers and then around 36 months begins to regress and perhaps even lose language or age appropriate social interaction and bonding.
The devastation that a parent experiences with the word autism is complicated because the disorder is not so well understood and it is even difficult to diagnose. We do not know what causes autism, there is great treatment response variability and the parent soon learns that they are dealing with a lifetime disorder. Another unique and very important difference occurs for parents adjusting to the news of having an autistic child. Whereas the terrible pronouncement that your child has cancer, or any life threatening physical ailment is heartbreaking and emotionally intolerable prompted by a fear of what’s to come, people around the parents and child are sympathetic, highly supportive and available emotionally and socially to the parents as supports. The cancer or physical ailment seems to bring the parents great empathy, support and understanding.
That dynamic of understanding, empathy and support is often not as readily available to parents of an autistic child trying to adjust to the equally devastating news of what their child is facing.
I hear quite often from parents that their friends, family and strangers just do not understand their child, why they behave in the ways that they do, and they wonder what is wrong with them. Parents tell me they frequently feel judged, unsupported and receive hostility from others because their child has this condition. When away from their homes, parents and autistic children regularly encounter stares, sometimes they experience rude interruptions to do something about their child’s behavior or “odd mannerisms”, and often they face feedback that their child is just bratty and they should be a better parents and control their child so they stop acting like “spoiled brats”.
My experience with parents has me believing that the contrast for the devastating news of a child with cancer, or a child with autism is extraordinarily different for parents with an autistic child because of the dynamic of lack of understanding, empathy and support available to them.
Parents with autistic children unfortunately often give into this lack of empathy by encapsulating themselves thus making their acceptance of their child’s disorder more difficult to deal with. I think that I can sum up best what parents of an autistic child feel like when out in public with their children through a poem by
Tina Moreland, entitled “A Public Display of Autism”:
If he falls to the floor, kicking and screaming, because there are no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order.
If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she sees it every day.
If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke.
If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how.
He may be too big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today.
If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper.
No, it’s not because she didn’t get the toy she wanted- If it were only that simple
Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand.
No, it’s not bad parenting. Discipline won’t help…This is autism, it’s his life. Don’t judge him, he’s not judging you.
This poem is rich in giving us a glance from the parent’s point of view when having to adapt to the lack of understanding, empathy and support from others when their child has autism. We all hate to see any child suffering a trauma of any kind, or facing a life threatening illness. The condition of autism which creates deficits in life that are part physical and sensory, part developmental, and part social and emotional is often not as fairly judged nor supported. That lack of support and understanding negatively affects not only the child, but the parents as well.
As I said at the beginning of this blog post, working with autistic children and with their parents has helped me gain great empathy for the individual and family situation. It has been one of my greatest professional life learning experiences. I have come to see that a child who is perceived as disabled is only limited by that label and the responses that it provokes from others.
Someday, hopefully we will learn much more about autism. In the meantime, let’s all try to be more tolerant of differences; supportive of parents who are doing the very best with what they’ve got, and not be judgmental when we see situations where parents are trying to help their child cope with their internal triggers which often unbalance them physically, socially and emotionally.
These children are not “disabled”, they are simply differently abled and capable of growing and developing typically as any child does- with early identification and intervention, appropriate treatment responses and with love and support of the child, the parents and the entire family.
My hope is that we all can offer the same love, support and hope to any mom or dad who may be coping with devastating words that no parent ever wants to hear about their child, regardless of what the situation may be…including autism.
Be well, joe cozzo
