Autism Awareness

Health & Wellness Celebrate Differences April is Autism Acceptance Month

By Tracy McCoy

Iwrite about many things that I know little to nothing about. I research, interview, dig and give it 100% because there are some topics that I think are that important. I am not a medical professional and am not attempting to offer any recommendations or medical advice. If you suspect that you or someone you love could be affected by autism my only recommendation is to talk with your doctor about your concerns. The word autism was first used in 1908 to describe patients who were especially withdrawn and self-adsorbed. These patients were thought to exhibit schizophrenic behavior and were therefore diagnosed as such. Largely ignored for 35 years, a child psychiatrist Leo Kanner, M.D. published a paper describing a group of children as being highly intelligent but displaying “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.” He gave it the diagnosis of “early infantile autism”. A year later scientist Hans Asperger described a milder form of autism now known as Asperger’s syndrome. The cases he was reporting on were all male and were considered highly intelligent, having difficulty with social interactions and specific obsessive interests. Sadly many children were institutionalized because their condition was so grossly misunderstood. In the late 70s research indicated that autism was largely caused by genetics and biological differences in brain development. It wasn’t until 1980 that “infantile autism” was listed in the Diagnostic and Statistical Manual of Mental Disorders for the first time. It was also officially separated from childhood schizophrenia. By the end of that decade it was defined as “autism disorder” and included a checklist of diagnostic criteria. In 1988 the movie Rainman was released starring Dustin Hoffman as an autistic savant with photographic memory and an incredible ability to calculate huge numbers in his head. While the movie was important because it raised awareness of the disorder, it was critical to note that not every child on the autism spectrum possessed these skills. In the early 90s the federal government made autism a special education category, identifying children on the spectrum and offering special services to them. In the 90s, the notion that autism could be caused by vaccines, specifically the MMR vaccine, was widely spread. Vaccine manufacturers removed thimerosal, a preservative from vaccines due to public fears. Many believe that the vaccine-autism link has been debunked. Meanwhile throughout the 2000s there appears to be more autism diagnosed or recognized by health professionals. In 2009 the CDC estimated that 1 in 110 children have autism spectrum disorders up from 1 in 150 just two years earlier. They attributed the increase to improved screening and diagnostic techniques. Eventually the DSM places all subcategories of the condition under one umbrella diagnosis of autism spectrum disorder (ASD). This meant that Asperger’s Syndrome was no longer considered a separate condition. ASD was then defined by two categories: 1 – Impaired social communication and/or interaction. 2 – Restricted and/or repetitive behaviors. All of this to say that it took 105 years to get from giving it a name to trying to understand it. I realize that one of the challenges of ASD is that it is as individualized as the people who have it. Why is it that we can send a photo across the world through a telephone in 10 seconds and put a pig valve in a human heart but I in 110 children are so misunderstood and their parents are left to try to figure out how to help their little ones.

When parents or teachers recognize that a child is not following what is considered “a typical developmental course”, they turn to the experts like psychologists and medical professionals for a diagnosis. Often these children appear to have an intellectual disability, sensory processing issues or problems with hearing or vision. This makes autism even more challenging to diagnose. Conditions such as these can also occur with Autism and it can be confusing to families when they are given

multiple diagnoses. An accurate and early autism diagnosis is key and can provide for better educational and home-based support. Once autism is diagnosed the next step is to evaluate educational needs. School professionals and parents then hopefully can work together to determine where their child is best served. Often schools are not equipped to handle the needs of autistic children, therefore they are placed in special education classes. There are many rights given to all children with developmental disabilities under the Individuals with Disabilities Education Act. In many schools teachers are discouraged from talking with parents about the behaviors they notice in the classroom. If a teacher recommends testing, the school is obligated to pay for that testing. So many times the student does not get the diagnosis, their behaviors lead to bullying, which exacerbates the condition. There are reported cases of children in middle school with self destructive behaviors such as cutting because of their distress. This puts teachers, other students and the autistic person in a bad situation. The systemic problem needs to be addressed, but how? The topic of autism in our educational system could be a topic for an entirely different article. There is no single test or evaluation that can diagnose Autism, rather a series of evaluations and a close look at family history, the mother’s pregnancy, early childhood illnesses, assessment of language skills and finally an autism-specific observational test. As we learn more about the similarities between Autism patients, more effective tests and evaluations are now available or on the horizon. Medical research suggests that nearly 50 percent of adults who experience autism and 45 percent of children with the diagnosis experience gastrointestinal symptoms. Sleep problems, hearing and vision impairment, low muscle tone, insensitivity to pain, and sensory issues are all co-occurring with autism. Some autistic patients are non-verbal or have atypical speech patterns, difficulty with communication and social skills. Repetition in behavior patterns, sounds or phrases, repetitive movements, difficulty with transitions, preference for sameness, extreme sensitivity to or significantly lower sensitivity to sensory stimuli.

Autism impacts the individual throughout their lifespan, but an early diagnosis can lead to improved quality of life. While the disorder can be apparent in infancy, typically behaviors develop during early childhood. Pediatricians typically screen children ages 18 – 24 months. The National Institute of Child Health and Human Development and the Centers for Disease Control and Prevention both have developed a list of signs and symptoms which can be found on their websites to help parents know what to watch for. There is no known single cause for autism, rather it appears to be caused by differences in brain structure or function. The structure of the brain in autistic patients is different than neurotypical development. Researchers are devoting more time and effort to investigation theories including heredity, genetics, and associated medical problems. Things such as parenting styles, vaccines or nutrition have all been blamed for the disorder but these theories

Nothing to Cure by John Roedel

Me: Hey God. God: Hey John. Me: Cure autism. God: No. Me: Why? God: There is nothing to cure. Me: Huh? God: Autistic people aren’t broken. They aren’t sick. They are just people singing a beautiful song with lyrics that are foreign to you. Me: But sometimes I don’t understand what song my son is singing…. God: That’s okay. Forget the lyrics and just sit back and enjoy the melody. Me: I don’t like to see him struggle. God: All flowers struggle just before they bloom. Me: If you won’t cure autism, what will you do? God: I’ll have you help me cure something else. Me: What’s that? God: Ignorance.

Taken from John Roedel’s book Hey God. Hey John. Available through www.johnroedel.com

have been disproven by the scientific medical community. No one gene has been identified as causing it but they are looking at segments of genetic code that people with autism may have inherited. It also appears there is a possibility that some people are born with a susceptibility to autism but researchers have not yet identified a single trigger that causes is to develop.

In a nutshell, they just don’t know, but thankfully more awareness has brought more research and hopefully better treatments to come. According to the Autism Society, “Just decades ago, many people with autism were placed in institutions. Professionals were less educated about autism than they are today, and specific service and support were largely non-existent. The picture is much clearer now. With appropriate service and support, training and information, children who experience autism will grow, learn, and flourish, even if at a different developmental rate than others.”

While there is no known cure, there are educational and treatment approaches that can address the challenges associated with autism. These approaches can lessen the disruptive behaviors and education can in some instances teach self-help skills for greater independence. No single treatment will work for every patient because every individual is different with different symptoms. Treatment must be started early and should focus on each individuals unique strengths, needs and weaknesses. We all have this set of traits and could all benefit from identifying what we are great at and where we need some work to make our lives easier and to help us reach our goals. Our needs surround what it might take to shift the focus from weaknesses to strengths. I in no way claim to understand the challenges patients and families face when living with autism. The autism spectrum ranges from mild symptoms to severe and the difference from one to the other is as far as the east is from the west. Families of autistic individuals are equally affected by the disorder and finding a balance is never easy. Support from medical professionals, educators, psychologists, neurologists and counselors are needed for parents as well as patients. Some therapies have proven effective in increasing communication skills, helping to develop social interaction and a sense of accomplishment in a safe environment. Art and music are particularly useful in sensory, tactile, visual and auditory stimulation. It is helpful for speech development and language comprehension. Art therapy provides a nonverbal means of self-expression and can help develop fine motor skills. Animal therapy can include working with dogs, horseback riding or swimming with dolphins and has shown benefit. Dolphin therapy was first used in the 1970s. Again this is never a one size fits all type of situation. What works for one might not benefit another. I do believe we owe it to the child to work with them to find a complementary therapy.

April is Autism Acceptance Month and that seems to make the most sense to me. A prayer written by the father of a young boy with Autism will be shared here. I think our most positive step to understanding autism must be to celebrate our differences. Find the positives and use them to counter balance the negatives. We all have both in our bodies and minds. Perhaps we have more to learn from the patients than the professionals. There are adults with autism and children who live to the best of their abilities and that is enough. Making their life as great as it can be may be the best we can do until we know more. We should speak about it more, support research and the efforts for effective treatments. We must support families and offer the best possible opportunities for those with autism.

Georgia Mountain Psychological Associates in Clayton offers Equine Therapy at their farm. They also offer counseling for parents and the autistic individual. For more information about these opportunities please visit www.gamtnpsych.org or call 706968-9060

“Equine therapy has been very productive and helpful for my daughter. She loves going to Dr. Pileski’s farm and working with the animals. It is helping with communication issues that she struggles with. Art and the horses allow her to express herself in ways that she ordinarily would not be able to.” Maggie B.

HCMC