In recent years Autism has become a common topic in the neurotypical world. It affects 1 in 68, and 1 in 43 males. You may be more familiar with the recent term Autism Spectrum Disorder. What is it? How do you visualize a spectrum that includes terms such as Pervasive Development Disorder, Rett Syndrome, Asperger Syndrome, High Functioning, Mild Autism? These are all forms of Autism, regardless of the name, and it affects communication, behaviors, and learning.
You may know children who do not communicate verbally, yet are brilliant. And there are children who do communicate, albeit in literal terms, yet appear to be emotionally immature despite their age. Every parent hopes for the birth of a child who is healthy. What happens when you have a seemingly healthy child who begins to exhibit signs of delayed development, with struggling behaviors over the years? It may begin with the baby who is inconsolable, but isn’t suffering from colic or other physical distress. There are the children who don’t play with toys, but are fascinated with motion or mechanics of moving objects. These same young people may become distressed at the smallest sensation that the rest of us struggle to identify – is it the temperature, a scent, the material they are wearing, a facial expression they are unable to recognize, the way the sound carries in a room, a crowd of people, texture of foods, the lighting… It could be any of these things or something else. The matter is that there are sensations that person is experiencing which cause them distress that they are unable to process or communicate. This can result in what appears to be defiance, a bad mood, non-compliant attitude, all of which are easy to take personally.
Autism is not a disease, but is a neurological condition. There is no cure, and people do not “grow out of it”, and it’s not know what causes it. While there is a strong movement currently for awareness and acceptance, what does that really mean? Acceptance does not mean “putting up with” someone because that’s just how they are. Acceptance and awareness are two factors that not only help a community understand the difference in these individuals, but also create a safer space for those on the Spectrum. If you know that someone has a food allergy, it’s common knowledge that it’s best that they avoid it. The same is with the Spectrum. When you are familiar with signs of someone struggling with something, it’s easier not to take it personally and react in their best interest. For many, this means supporting a family dealing with a meltdown by respectfully keeping distance or offering encouragement rather than criticism.
My son was diagnosed with Asperger Syndrome last year. He’s self-taught with reading and programming games. He remembers everything. The family saw him as peculiar and moody. As his mother I noticed the delays, lack of reflexes, absence of understanding what many of us find as basic skills, but honestly, it looked like he never grew out of the Terrible Twos. Each year he seemed to struggle more with changes – each new classroom layout, activities out of schedule, how to interact with people his own age. The diagnosis was a blessing. We finally had direction for how he was struggling. There was no solution, however there was a different way to communicate with him and awareness to help him be more calm. Don’t misunderstand me; each day is different, and I still have to think ahead whenever making plans or preparing him for something out of the ordinary. And those plans may have to cancel or change, sometimes there are just difficult days. The difference is that I’m learning not to enable the bad behaviors, rather encourage him in positive ways, and it helps to work closely with the school for consistency in how we deal with different situations that arise.
The stigma that was once associated with people on the Spectrum is dissipating. When you see these children, respect their distance, know that their minds are processing all of their senses at a rapid pace, be kind, don’t take offense should their response not be what you expect. You may see their response as rude, aggressive, or disrespectful. It’s not personal! Your understanding shows support to the caregivers and parents who need just that more than anything. They’re all part of the community, and while the diagnosis is a broad definition, no two on the spectrum are alike. That not only makes them unique, but also amazing individuals.
Amylane Duncan is a representative for the Autism Society of East Tennessee, serving on the Board of Directors. For further information on building support in our community, contact her at firstname.lastname@example.org.
Pressure is mounting for the U.S. House of Representatives to vote on the amended America Health Care Act (AHCA). The AHCA decimates the Medicaid program to the tune of $880 billion over a ten year period, shifting cost burdens to states and jeopardizing a critical lifeline for people with disabilities.
The latest proposal would enable states to seek waivers that would significantly impact coverage for people with pre-existing conditions, including people with disabilities. The new amendment would allow states to charge higher premiums to people with pre-existing conditions, endangering care for millions of Americans.
Now is the time to stand up for those who need it most. Please join today’s National Call-in Day! Contact your Member of Congress (202-224-3121) and urge them to oppose proposed cuts to Medicaid and vote NO on the AHCA!
Make a call today: Congress needs to keep hearing from people now to #SaveMedicaid.
East Tennessee State University and Milligan College have joined the Vanderbilt LEND (Leadership Education in Neurodevelopmental Disabilities) Consortium. The Vanderbilt LEND Consortium is a 5-year project with a variety of institutions across the state. This year we had 11 trainees in East Tennessee complete our 300 hour inter-professional training program in learning more about Neurodevelopmental Disabilities (NDD) along with leadership skills. Over the next 4 university academic years (annually Fall and Spring), we will have approximately 15 trainees per year with the possibility of more given other funding opportunities.
We will be taking applications for any person who is a parent of a child with a disability or a person who is working on a graduate degree who is interested in working with young people with disabilities. The topics covered in the LEND program range from Down Syndrome, educational services for early intervention to adult transition, prematurity, Autism and genetics, patient- and family-centered care, and legal and ethical issues in serving young people with NDD.
If you or someone you know is interested in applying to be a trainee for the 2017-18 academic year, please complete our application and submit by June 1st, 2017. If you have any questions, please feel free to email me at email@example.com or call the office at 423-439-7586.
Julie Sears, M Ed/EAL
LEND (Leadership Education in Neurodevelopmental Disabilities) Coordinator, East Tennessee
The ADA Education and Reform Act (H.R. 620) revises civic action procedures for businesses and organizations found to be in noncompliance with the Americans with Disabilities Act (ADA) provision requiring access public accommodations. The Autism Society strongly opposes H.R. 620. The ADA has been the law of the land for nearly three decades, giving businesses ample opportunity to remove existing barriers. The bill significantly affects the ability of people with disabilities to legally enforce their rights under ADA and shifts responsibility for educating business owners about rights denied under ADA to people with disabilities.
The Autism Society is closely monitoring recent developments surrounding a possible health care compromise in the House of Representatives. A new amendment is winning support making it more likely that a vote could happen as early as this weekend. Action is needed immediately to stop the American Health Care Act (AHCA) from being approved by the House of Representatives. The latest proposal would enable states to seek waivers that would allow them to charge higher premiums to people with pre-existing conditions, including people with disabilities. The new amendment also would allow states to seek waivers from the Affordable Care Act’s requirement to provide essential health benefits, including crucial services for people with disabilities such as rehabilitative services and devices and preventative and wellness services. Advocates must keep up the momentum and prepare for the possibly of a full House vote on the new legislation. While rumors swirl on the latest contents, we remain committed to ensuring any legislation put forth by Congress protects Medicaid so millions of people with disabilities can receive the services and supports needed to take part in the American dream.
In the second of two special Director’s Messages about autism spectrum disorder (ASD), NIMH Director, Dr. Joshua Gordon talks about NIMH funding of research aimed at developing interventions and services for people across the lifespan with autism spectrum disorder.
Read the Director's Message >>
April 18-24, 2017 onlyFrom April 18th to April 24th, proceeds from the Love You To Pieces Necklace will go back to the Autism Society of America.
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