What Children With Autism Wish You Knew
Autism Spectrum Disorder (ASD), more commonly referred to as “Autism” is not a single disorder, but a spectrum of closely related disorders with a shared core of symptoms. Every individual on the autism spectrum has problems to some degree with social skills, empathy, communication, and flexible behavior; but the level of disability and the combination of symptoms vary tremendously from person to person. In fact, two kids with the same diagnosis may be very different when it comes to their behaviors and abilities.
If you’re a parent dealing with a child on the autism spectrum, you may hear many different terms including high-functioning autism, atypical autism, autism spectrum disorder, and pervasive developmental disorder. These terms can be confusing, not only because there are so many, but because doctors, therapists, and other parents may use them in dissimilar ways. No matter what doctors, teachers, and other specialists call the autism spectrum disorder, it’s your child’s unique needs that are truly important.
The following is a summarization from Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm, author and parent of child with ASD.
#1: I am, first and foremost, a child. Autism is only one small part of the child. It does not entirely define the child. It does not place clear or definitive limits on their potential at the time a diagnosis is made. It is of the utmost importance that we have similar expectations of children with autism as we do for children who follow a typical developmental trajectory while providing appropriate support as they work to reach that expectation. Otherwise, we may set the bar too low and the children abide by the limits we have placed on them.
#2: My sensory perceptions are disordered. Sensory sensitivities may affect an autistic child’s sense of taste, touch, sound, smell, and sight. Some children find certain sensory information aversive so they try to avoid it. Removing shoes, covering ears, or turning off lights are some ways children may attempt to lessen the harshness of sensory information. Other children seek out sensory input; similar to if we were half-asleep and trying to remain alert. We often stand up, walk around, or try some other means to arouse ourselves. For children with ASD, this may look like jumping, spinning, or running. Occupational therapists are extremely effective in helping children with ASD to regulate their sensory systems which in turn helps the children to find comfort in an otherwise chaotic sensation-filled world.
#3: Distinguishing between won’t and can’t. Children with ASD are very quick to realize our expectations of them. Like many children, they will take short-cuts when allowed. When a child with ASD, or any child, does not comply with what we have asked them to do, we should ask ourselves, “Is this a performance deficit (won’t) or a skill-deficit (can’t)?” If it is a performance deficit and the child has the ability to complete the task we have presented, then we must offer the proper motivation to encourage compliance. If we determine it is a skill deficit, then we must provide the necessary teaching and guidance to help the child to complete the task. By addressing these two questions, we reduce the frustration of both parties.
#4: I am a concrete thinker. I interpret language literally. We must be constantly aware of the language we use when speaking to children with ASD. Clichés, inferences, and indirect instructions are often lost on those with language impairments. It is best that we use succinct phrases when speaking. It takes effort and practice to adopt this strategy but it comes with
#5: Be patient with my limited vocabulary. Some children with ASD have learned that it is socially acceptable to respond when spoken to. They have learned the art of turn-taking. However, when the verbal exchange becomes too complex, their response will likely reflect their limited vocabulary. We may observe repetition of the last words we said or a “scripted response” which may be appropriate in context but is taken from a television show, movie, or song. Some children speak a great deal but the content is shallow. They are unable to build upon our statements or elaborate on their own statements. The attempts to compensate for limited vocabulary may leave us feeling confused, thus requiring patience on our part as we remember that this is a skill deficit that will require ongoing support.
#6: Because language is so difficult for me, I am very visually oriented. For those with limited language abilities, visual presentation of information may be more effective. Show your child what to do rather than giving a lengthy explanation. Visual schedules, which include pictures of the activities that will occur and in what order, are very helpful to assisting children with ASD organize their behaviors, time, and understand expectations.
#7: Focus and build on what I can do rather than on what I can’t do. Nurture your child’s gifts. These gifts may not come in the same form as a typically developing peer, but gifts do exist. Look closely. Be creative in the way you help your child uncover their gifts. Celebrate all accomplishments, no matter how small. Share your child’s accomplishments with your own friends. Your excitement will be contagious.
#8: Help me with social interactions. Social development is a long and slow process. We are constantly receiving feedback from others and revising our behavior. However, children with ASD may be aware of the feedback they receive from others but are unable to generate an alternate, more appropriate response. For other children with ASD, the social world may be so unpredictable and confusing that social interactions are believed to be too troublesome and not worth the effort. Regardless of where your child with ASD is in their social development, it is highly likely that direct instruction, ample encouragement, and patience will be needed to help them navigate social interactions with others, especially those outside of the family.
#9: Identify what triggers my meltdowns. All behavior is communication and we must work to decode the message. It is highly likely that meltdowns occur for one or more of the following reasons: sensory sensitivity, the child is trying to avoid doing something they don’t wish to do, is seeking attention, is not feeling physically well, or is imitating the poor behaviors of another person. Once the purpose of the behavior is identified, we can work to teach the child a more appropriate way to have their needs met.
#10: Love me unconditionally. This is true for any child, not only those with developmental differences. Most of us did not meet every expectation our parents set for us, yet they loved us nonetheless.
Knowledge and understanding is the first step in supporting those with ASD and their families. Each child is a unique individual with much to contribute. It is the obligation of the community to help all children reach their full potential while providing unconditional love and support.