An interview with Lisa Goring of Autism Speaks
(This is Part 1 of a 2-part series on Autism Awareness and Acceptance)
According to the most recent study by the CDC, 1 in 88 children in this country are affected by Autism. That’s over 1 million kids! 1 in 54 boys! How is that possible??? While there is some debate as to whether that number has increased exponentially due to increased prevalence or just increased diagnoses, it is undeniable that Autism is touching all of our lives. The Mother Company has had the true honor of connecting with a bunch of moms with kids on the Spectrum because our Ruby’s Studio products seem to be a helpful tool to aid in feelings recognition and expression for kids in this community.
Lisa Goring, the Vice President of Family Services at Autism Speaks, kicks off our series with some valuable information to help support this community through greater empathy and understanding. — Sam Kurtzman-Counter, TMC President
What is Autism?
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.
ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.
What is the Spectrum?
Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world.
Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.
What is life like for an autistic child?
- I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. If I get a sense that you don’t think I “can do it,” my natural response will be: Why try?
- Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.
- Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next.
- Now it is much easier for me to comply.
- I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.”
- It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
- Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”
- Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
- Focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Look for my strengths and you will find them. There is more than one “right” way to do most things.
What’s the best way to interact with an autistic child?
First and foremost it’s important to treat a child with autism like any other child. You should speak with them as you would any other child their age. Always presume that they understand you even if they cannot communicate verbally. Depending on the needs of the child you may need to wait a little longer for a response, or you may need to shorten some of your sentences. Many children with autism are very literal and so it’s best to speak in concrete terms and not use slang or idioms.
How do you describe autism to a young, non-autistic child?
You could say something like, “This child has autism. It affects the way a person’s brain works. Some people with autism may have trouble talking, or playing with toys. Sometimes they can have trouble making friends. It’s important to know that kids with autism want to be your friend and they want to play with you, they just may need some help.”
It is important to remember that the child with autism may not have been told that they have autism (each family deals with disclosure of this information differently). If a parent is talking to their child (without autism) about a child with autism, they may need to let the child know that they should not mention autism to the child with autism unless he brings it up.
How can parents with non-autistic kids be helpful to those parents with autistic kids?
Especially when a family first learns of their child’s autism the following can be helpful:
- Parents of children without autism should let their friend that has a child with autism know that they are there for them. You may want to start by asking how the child is doing and then let her take the lead. If she talks about the diagnosis and feelings, be a good listener. Some parents may not want to discuss the diagnosis (at least not yet). It is important that you maintain your contact with them. Invite her to go for a walk or a cup of coffee. Try to keep the conversation away from your child’s achievements and successes, if things are difficult for the family living with autism.
- Ask if there are websites or books that she would recommend so that you can better understand autism.
- Do not share the diagnosis with others. Even with the best of intentions, each family is different when it comes to telling people about their child’s diagnosis. They will tell people when they are comfortable doing so.
- Some families affected by autism have founded that initially it was easier to maintain friendships through phone calls, texts and email.
- Offer to watch your friend’s child with autism (if you are comfortable doing so), or to watch the typical siblings so your friend can have a break.
- Maybe offer to help with errands. Sometimes it can be hard to take a child with autism out on a variety of errands. If you’re going to the grocery store or dry cleaner, perhaps you can find out if your friend needs anything.
- Let your friend know that you can be her “go-to-friend” if she needs someone to pick up or drive the typical sibling to activities or events.
What tend to be the toughest issues for parents with autistic kids?
Autism affects communication, social interaction and repetitive behaviors and/or intense interests. Given the magnitude of these three areas it impacts all aspects of the life of a family. Autism affects the whole family and it is not something that the child or the family signed up for. It requires a significant amount of therapy and the therapy is not always easy to find or pay for. It’s hard work for the child with autism as well as the family and it can be extremely isolating.
Is there anything else you’d like to add?
We have a group of Family Support Tool Kits available for all to download. Included is a kit specifically for “Friends of Families Affected by Autism.”
Lisa Goring is the vice president of family services at Autism Speaks. She lives in New York with her husband and two children, one of whom has autism.
The Mother Company aims to support parents and their children, providing thought-provoking web content and products based in social and emotional learning for children ages 3-6. Check out the first episode of our Emmy award winning children’s series, “Ruby’s Studio” along with our beautiful children’s books, music, and more.
This article was originally published April 12, 2012Posted in: Expert Advice, Learn, Special Needs