Monday, August 15, 2016
Working toward a better understanding of autism
It is not surprising that a quick Google search reveals that autism has held a central place in the media for years, yet much of the discussion is filled with confusion and misunderstanding. What is the cause of autism? What is the progression? How does autism present? How can we treat people diagnosed with this disorder? There are no simple answers to these questions, and yet the progress we have made in recent years related to autism have brought improvements in diagnosis and increased resources for families. Despite continued progress, a diagnosis of autism can be especially difficult for parents to understand and manage.
When you take your child to the pediatricians you are asked to fill out an autism screening tool known as the Modified Checklist for Autism in Children (MChAT). It asks 20 questions such as “Does your child get upset by everyday noises?” and “Does your child respond when you call his or her name?” While you may be unaware of its purpose when you are filling it out, the MCHAT is a preliminary screening tool in the diagnosis of autism. It does not provide a diagnosis but rather targets children that need further testing for autism. However, parents do not have to rely solely on the MCHAT if they have concerns regarding their child as it is merely meant as a screening tool.
Developmental-Behavioral Pediatrician Sarah Schlegel, MD, of Connecticut Children’s Medical Center, recommends discussing any concerns first and foremost with the child’s pediatrician. Further steps are age dependent. The "Birth to Three" program in Connecticut can be utilized for children under three and can be contacted through the Child Development Infoline at 211 or 800.505.7000. If the child is over three and in school, parents can request an evaluation from their school district's special education program. If the child is not in school yet, parents can still turn to the central office or local school for evaluation.
An autism diagnosis can be a scary time for a family, however it is not necessary to deal with it alone. Your child’s pediatrician can serve as your primary resource for further guidance. This may include working with a developmental-behavioral pediatrician, special education in school districts, and utilizing state and nation specific resources. Dr. Schlegel recommends Autism Services and Resources Connecticut. In addition, the Center for Disease Control and Prevention has a list of resources for families.
It is important to realize that autism is a spectrum disorder, meaning that it can present in a range of ways. It will not present the same way in every child. Some children have greater challenges with social interaction, while others have difficulty with verbalization and may even be unable to talk. Still other children may be hypersensitive to sounds, smells, sights, or tactile stimulation. There is no clear-cut presentation, so there is no single treatment method. This is what can make it so challenging to help children with autism and can also make it difficult for parents and family members to understand how the child sees and experiences their environment.
In his article in Forbes entitled “Experience What if Feels Like to Have Autism,” Robert Szczerba, a father of an autistic child, compiles six online videos that can help others understand how some children with autism experience their environments. Many of the videos are created by children with autism and provide a powerful insight into how simple everyday activities like walking down the street or watching TV can take on a whole new meaning for someone with an autism diagnosis. While it certainly does not capture what every child experiences, resources like this are beginning to help others understand the world through the eyes of an autistic child. This can help family members make sense of some of their child’s behaviors and can provide important insights into how we can best help these children.
A diagnosis of autism can be scary, there is no denying that. However, progress in medicine, technology, and an increased awareness of autism have put us in a place to better understand and help children diagnosed with autism. There is a renewed sense of hope that we can do more for these children than we were ever able to before.
Katelyn Cusmano is a Backus Hospital Volunteer and a UConn Medical School MD Candidate for the class of 2018. This advice should not replace the advice of your personal health care provider. To comment on this column or others, visit the Healthy Living blog at www.healthydocs.blogspot.com or e-mail Ms. Cusmano or any of the Healthy Living columnists at firstname.lastname@example.org.