Approximately 1 in every 88 children are on the autism spectrum. That means you probably know someone who has a child with autism. Maybe one of your child’s classmates has autism, or a neighbor down the street. Maybe your cousin’s child has autism or your friend’s child. No matter who you are, you probably can’t go through your life without knowing someone touched by autism.
Parents of children with ASD are the same as anyone else. They are parents, they love their child above all else. They see the good, the wonderful, the funny, the loving side of their child. They cherish the sweet moments, laugh at the funny things they say, celebrate their accomplishments. And yet, parents of children with autism are still a mystery to many. They are seen as amazing, saints and tough. And as much as they may be all these things, they are still just parents trying to do the very best for their child.
Even though ASD is found in every neighborhood and every school, it is misunderstood.Other parents at the playground still shy away from parents there with a child with autism and try to steer their child away. But autism isn’t contagious and isn’t dangerous. It is just misunderstood.
Here are ten things that parents raising children with ASD would like you to know:
Autism has many faces. Yes, the child down the street that doesn’t use any speech, flaps his hands and seems to be in his own world has autism. So does the young boy that is intelligent , has always attended mainstream classes but doesn’t seem to have any social skills. Autism is a spectrum disorder because there is a wide range between mild and severe. Some children with autism are affectionate, some don’t like to be touched. Some talk all the time, some rarely speak, some only speak if someone else initiates conversation. Children with autism come in all sizes, shapes and faces. Don’t assume someone isn’t autistic because they don’t look like what you see as autism.
No one yet understands the cause of autism - although there are many theories. Unless you are a medical researcher looking into the cause of autism, don’t share your theories. The fact is, my child has autism and my energy is put into making sure he has the best possible chance for success and happiness, not trying to find out why he is the way he is.
My child is entitled to a good education. I know your child has to share a classroom with my child. And I know that at times the teacher must pay more attention to my child than yours. My every child is entitled to a good education. That includes children with all types of disabilities.
Children with autism have feelings. A big misconception about autism is that these children don’t have feelings but that just isn’t true. What is true is that it is harder for most children with autism to explain and talk about their feelings. But they do have feelings, they love, they like, they want. Their feelings get hurt if you say something mean and they feel good if you complicate them.
Pay attention to what you say around children with autism. Children with autism take things literally. If you say "Don’t pull my leg," chances are they will look at your leg and be confused because no one is pulling your leg. When talking to a child with autism avoid sarcasm and euphemisms. Stick with the facts.
Most children with autism have sensory issues. Don’t judge when my child is wearing shorts and no coat during the middle of winter - he probably is so uncomfortable in long pants and a heavy coat that he finds it hard to pay attention to anything except how uncomfortable he is. If he is sitting with his hands over his ears, he isn’t trying to be rude, it is probably too noisy or there is some sound that bothers him. Instead of judging his actions, try looking at the world from his perspective and help him to be more comfortable.
Reasons are not the same as excuses. Sometimes it is possible to explain a child’s behavior, such as when a meltdown occurs because of sensory overload. WhenI explain my child’s behavior it doesn’t mean I am excusing poor behavior. But, finding the reason helps to prevent the same behavior from occurring again.
Children with autism sometimes have strange interests. Some children with autism are interested in things like trains, which most adults understand. But sometimes interests are out of the ordinary, like an obsession with washing machines or sprinklers. Often, their interest is focused and they talk about it all the time. They usually learn everything they can about a topic and enjoy sharing this information with others.
Most parents of children with autism didn’t know anything about it until their child was diagnosed. As parents, we didn’t have the benefit of knowing what to expect, how to advocate for our child’s educational needs, how many doctors/therapists we would need to see. We became experts because we needed to, because it is our responsibility to our child. Most of us are willing to share what we have learned with other parents who are just starting this journey.
My child is more than a diagnosis. My child has strengths, interests, wants and needs. He is a child and an individual. Please see him as a unique individual and love him for who he is, not what he has.
Eileen Bailey is a freelance health writer. She is the author of What Went Right: Reframe Your Thinking for a Happier Now, Idiot’s Guide to Adult ADHD, Idiot’s Guide to Cognitive Behavioral Therapy, Essential Guide to Overcoming Obsessive Love, and Essential Guide to Asperger’s Syndrome. She can be found on Twitter @eileenmbailey and on Facebook at eileenmbailey.