For TGNR’s 1/31/2016 installment of Sunday Brunch, TGNR introduces you to Anne DeFranco. This is the first edition of a monthly column that will discuss autism from the perspective of both a parent and as a Special Education professional. Anne is the proud mother of three children; her two eldest sons have been diagnosed with Autism. Both are now high school age. Professionally, Anne has earned bachelor degrees in Special Education and Elementary Education. Additionally, she holds certifications for Secondary Education and English As A Second Language. Anne has worked as a special education teacher in both traditional and non-traditional classroom settings. She has served as a school Supervisor for Special Education, as well as a District Representative for the Special Education Department, grades 7-12. Most recently, Anne worked as a Program Supervisor for a live-in facility, overseeing four adults with severe disabilities, all of which were non-verbal.
In her first installment, Anne tells her story about Autism, how it became a part of her life as a mother and ignited her passion to bring the best information and guidance to those in need.
When my oldest son was in preschool, it became clear that he was not like the other children in his class. My son had always presented as very active. He also had a few odd behaviors such as not making eye contact when talking to us or moving his hands in a strange way (that we latter learned was a “stim” or self stimulating behavior). He would play with his toys in an unusual manner, such as lining them up instead of engaging in pretend play. He was also very rigid in keeping to a schedule and deviation spelled disaster. At the time we told ourselves, “what toddler does not have a few odd behaviors?” Young children can be challenging teachers, as anyone who has spent time with a toddler can attest! Eventually, his behavior reached a point where they began to impact his ability to learn and his ability to appropriately make friends.
As the behavior of my son progressed, I began dreading taking him to school. His teacher would inevitably have the look on her face that would suggest she had been hoping and praying he would be sick that morning. Picking him up from school was also a nightmare! He would cry and refuse to leave the classroom, unable to handle the abrupt change in activities. His teacher, the ever present centurion at the door was there to deliver the report of his behavior for the day. The other parents waiting in the hall gave me sideways glances, not daring to make eye contact. Each trying in their own way to pretend that my private Hell and I did not exist. To them, my child was simply “that kid,” the one classmate which parents always heard a bizarre story about on the way home. I was beside myself and had no idea what was going on with him.
After picking up my son one afternoon, the teacher’s aide approached me in the parking lot. She was a very kind woman and always tried to say something positive when she saw me.
“I just wanted to give you some information…”she started hesitantly. I think she was afraid I would not want to hear what she was going to suggest.
“Information about what?” I asked, probably just as hesitant. At this point all I had heard from people at school was how horrible my son’s behavior was.
“I have a daughter who is now in middle school. She had many issues when she was your son’s age and a lot of the same behaviors. But she is also very smart, which I believe your son is too. I know his teacher is overwhelmed with his behaviors, but when I work with him one on one, he is showing signs of being able to read and identify things I have rarely seen in preschool children. My daughter was recently diagnosed with Asperger’s syndrome. It might be something you want to look into as well. Just a suggestion…”
I stood there in the parking lot quietly, trying to absorb this information. I thanked her and said good bye and got into the car to drive home. That evening I began to search for information on Asperger’s Syndrome.
The Search For Answers
My conversation with the aide took place in 2002. At that time Asperger’s had only been introduced into the Diagnostic and Statistical Manuel for Mental Disorders (DSM) in 1994. The diagnosis had been recognized abroad prior to that time, but it was a newly accepted diagnosis in the United States.
In 2002, information was harder to come by. Even our pediatrician was not able to provide me with accurate answers. Had I not persisted despite these obstacles, I may not have received answers as quickly. If it had not been for the brave and caring intervention of this teacher’s aide, as one parent to another, our journey for answers may have been comparatively obtuse. Further, the diagnosis of my eldest son is what led to the earlier diagnosis of my second son. To this day I believe that early intervention and the speech therapy he received helped him with his extraordinary acquisition of language and social skills.
The 2016 Dilemma: Making The Right Choices A Midst The Noise
This is a clear shift from 2002. Today, autism holds a cemented presence in the collective national outlook regarding public health. Whether it’s the ongoing debate over causes, purported cures, or portrayal in the media, autism regularly permeates the news.
As such, parents and caregivers seem to have the opposite problem in 2016 than I had in 2002. There is so much information that the challenge has shifted to identifying which information is accurate and, moreover, what portion is applicable for each unique diagnosis. Convenience of data has made it easier for caregivers to explain autism to concerned family members and loved ones. However, misinformation can often cause these same family members to become armchair psychologists and physicians.
The Danger of Misinformation
When formulating the best choices for your child, this chorus of advice can be at the very least annoying and at the very worst dangerous. Erroneous information may lead to family members pushing inappropriate or untested therapies-such as a restrictive diet- without testing for medical need or additional monitoring for adequate nutrition. Unsubstantiated treatment claims can also push parents away from well tested therapies such as well balanced diets, speech, occupational therapy for sensory integration,
or even social skills groups. Accessibility of information about autism has without doubt increased awareness, but also allows unsubstantiated cures to be accessed just as easily. The good intentions of family members are not in question; the veracity of their data is.
Some family members may flat out deny the child displays any of the behaviors in question or even the existence of autism altogether. The growing acceptance of autism in popular culture has led to the creation of a caricature or allusion to autism in certain characters that downplays and degrades the reality and may make it seem as if autism is a farce or fad. This can at times lead family members to dismiss the gravity of what parents may be facing.
I had family members that fell into the latter category. They would express that I wanted something to be wrong with my children, therefore I imagined the symptoms and pushed a diagnosis. Such behavior makes for frustrating family gatherings and strained family relationships when what a caregiver truly needs is a support system.
What I Give To You
In the time since my sons have been diagnosed, I have met and worked with many individuals with Autism Spectrum Disorders. I have taught self-contained Autistic Support classrooms with young elementary aged children as well as in mainstream middle school and high school settings. I have guided individuals in non-traditional settings such as day camps and nature center classes and I’ve worked with adults with autism. For all the counsel and instruction I gave, all the education I have accomplished, I have never stopped learning.
The most important lesson I have learned is this: the best information about autism, outside of the medical community and professional educators (with whom I strongly urge parents create a healthy partnership), comes from other people with autism and their caregivers. Most communities now have excellent support groups for caregivers, individuals with autism at any age, and even siblings of individuals with autism.
I offer this column as a way of sharing these experiences and exploring other important topics to further the pursuit of a real understanding of autism. As one who has been a parent, and who has worked professionally in special education, I want this column to serve as an avenue to provide the best information available to people in all stages of managing autism as well as creating an open and respectful discourse for anyone that may be in need.
The Lesson Only Time Could Teach
My sons are nearly adults now. Autism is a part of our every day life, but I have made sure that my boys know that their defining label is not autism. They are young men who happen to have autism. My oldest will be 18 this spring and will be attending college in the fall. He plans on studying math with the hope of getting a master’s degree and a job in the statistical analysis field. My younger son is in the 10th grade. He would like to study psychology and music and use both to help others as his career. Little do they know that together they have taught me about the amazing intricacies of the human mind that we have named autism; and how to be the best mother, teacher and human I can be.