What is Autism Spectrum Disorder (ASD)?

Many people have heard of autism, but there is a lot of misunderstanding about what it actually is. Autism Spectrum Disorder (ASD) is a developmental disability that currently affects approximately 1% of the world population and about 1 in 68 children in the United States. ASD is an umbrella term that includes the previous diagnoses of autistic disorder, Asperger syndrome, PDD-NOS (pervasive developmental delay - not otherwise specified) and childhood disintegrative disorder. Boys are diagnosed with ASD at a much higher frequency than girls, although this may be due to misunderstanding of symptoms in girls therefore underdiagnosing them. ASD is a lifelong disorder. It is not something a child will “grow out of” and early intervention can greatly improve a child’s long term life experiences.

What classifies a person as having ASD is trouble with social communication and a need for repetitive behaviors. People with ASD range from being significantly impacted by their disorder to highly functioning and can range from severely mentally challenged to brilliantly gifted. No two people with ASD will show exactly the same symptoms. Only a very small percentage of people with ASD are savants.

Some things that are common in people with ASD are:
- Lack of eye contact
- Trouble relating to other people in a "normal" way
- Trouble expressing themselves, particularly emotionally or in social settings
- Fixed and repetitive behaviors
- Intense interest in a single or limited number of (often quite unique) topics
- Trouble adapting to changes in routine
- Odd speech patterns or speech delay
- Taking everything literally, trouble understanding figurative language or pretend play
- Abnormal reactions to sensory input
- Stimming (repetitive behaviors that are either self-soothing or in response to intense emotions)

Children are often diagnosed when their parents and pediatricians see that they are not reaching the same milestones other children their age should be meeting, although some children are diagnosed when they start losing skills they had already acquired. Although moderate to severe cases are often diagnosed by the age of two, many children, especially those who are less impacted by the disorder, are not diagnosed until much later. Some people are not diagnosed until they are adults.

There are many other conditions that are comorbid with ASD. Many people also have seizure disorders, sleep problems, stomach conditions, mental health issues, and sensory processing disorder to list a few. Due to autistic symptoms (like being non-verbal or processing sensory input differently) it is often hard to diagnose comorbid conditions in individuals with autism and in many cases they are written off as “part of the autism” when they are actual separate issues.

Although there is no completely established cause for ASD yet, there has been research and we are currently learning more about what might cause it. Although originally it was believed to be caused by lack of emotional connection by the mother, that is no longer believed to be a cause. It is believed that there is a genetic component to ASD. It has been shown that if a child has a sibling with ASD they are more likely to have it themselves and it does tend to run in families. It has also been shown that ASD is most likely triggered during gestation or shortly after birth. Children who are premature or low birth weight, born to older parents or to mothers who took certain drugs or had certain complications during pregnancy are more likely to develop ASD. Although there is a huge debate about a link between vaccines and autism, many large studies have been done and, as of now, the science stands firmly behind no link. The CDC is currently doing a large, ongoing study called SEED (Study to Explore Early Development) in hopes of finding out more information about the cause.

Many people are dismayed at an ASD diagnosis, but unless functioning is highly impaired and there is significant mental delay many, if not most, people diagnosed with ASD can live full lives, going to school, working, marrying and having children of their own. A diagnosis just explains why things are different with a person and allows the people around them to give them the support they need to thrive. There are many interventions and supports available to people on the spectrum today. People with ASD are just experiencing this world in a different way than the rest of the population.

Sources for details that were not already stored in my brain:
https://www.cdc.gov/ncbddd/autism/index.html
http://www.autism-society.org/what-is/facts-and-statistics/
https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

Sesame Street's New Muppet with Autism, Julia

Many, perhaps most, people in the autism community know that Sesame Street has introduced a new muppet, Julia, who is on the autism spectrum. It has drawn a lot of attention, both positive and negative. Some people are glad that it shows a more realistic autism than movies like Rain Man. Others are upset that it didn't get into the harder aspects of the disorder, like diapering older children and violent outbursts, feeling like Julia doesn't show thier life with autism. The things is everyone on the spectrum is different and Sesame Street is a show for children. Julia's role is to help preschool children learn how to make friends with people who are different in ways they don't understand. She is there to teach understanding, inclusion, and acceptance of differences.

There is almost no situation where everyone will be perfectly pleased with anything in this world. When you are discussing a topic as vast and complicated as autism spectrum disorder that problem just gets magnified. There is no way to make a character who has all the complexities, issues, comorbidities, strengths and complications that can be involved with the whole spectrum of the disorder. What does get included for public consumption on screen has to be all about the audience and the goal of the show and character.

I watched the original segment and it had me in tears. It shows the things my Little Bear does as different, but okay, and as something to understand and accept rather than something to hide away and pretend doesn't exist. He is ten now and I still take my Little Bear away, often with special stuffies just like Juila, when he is melting down for whatever reason. Loud sounds used to break him down almost exactly like the siren did Julia; they still do on hard days. I still coach him through deep breathing to calm him down during meltdowns. This show changes autism from some scary "other" to avoid into just differences in a friend. Once again Sesame Street is teaching inclusion and friendship. This is why Julia is so special to my heart.

Someone has to pick and choose what to include, what to explain, what to just show, and how the interactions will go. Theater is so much easier than real life on the spectrum because it is all scripted. Someone is in charge of every detail. A soap opera will get a very different character than a show for preschoolers. A documentary will have a very different feel than a fictional romance or a cartoon. Rather than have issues that a preschool show puppet character is not as severely affected as any one particular person with autism, we should applaud the fact that a show as influential as Sesame Street has a character with autism who is noticeably affected by the disorder. It isn’t a teen boy with a couple minor quirks who gets the girl in the end, but a child with meltdowns who echoes and is only somewhat verbal. This is a huge step forward, a huge preschool sized step, but childhood is where everything starts.