Throwback Thursday: Should I Tell My Child They Are On the Spectrum?
Throwback Thursday: Should I Tell My Child They Are On the Spectrum?
Categories: RECENT RESEARCH
Stephanie C. Holmes, M.A., BCCC
Certified Autism Specialist
Originally posted 4/3/13
One in 50. That’s the newly-released estimate of school-aged children who are on the Autism Spectrum. With World Autism Awareness Day this month, we’re excited to feature Certified Autism Specialist and therapist Stephanie Holmes. If you work with special needs children and their families, this is a question you will undoubtedly face.
One of the questions I am most often asked is, “Should I tell my child that they are different from other children? Should I tell them about their diagnosis?” Many parents fear “labeling” their child and the stigma associated with diagnostic labels. Although I understand these fears, we live in a world of labels and I explain to parents, “Your child is different and because of that people around him or her are going to label them. I would prefer they get the correct label.”
What if my child is labeled?
Often, children on the spectrum who are not diagnosed or not “labeled” will be victim to misinterpretations of their behaviors and mannerisms by the adults in charge. It is a fact of life that a child who has learning challenges or who is on the spectrum will not receive the help that can be provided through a 504 plan or Individualized Education Plan (IEP) without the proper diagnostic “label.”
One educational website shares, “Only certain classifications of disability are eligible for an IEP, and students who do not meet those classifications but still require some assistance to be able to participate fully in school would be candidates for a 504 plan.” Disabilities or challenges that meet the requirements for service are specifically outlined. The school system is not required to give services based on a parent’s hunch or because a child is failing school or has various behaviors of concern. In order for the school to put a plan in place, the “label” or diagnosis is required.
What if he/she is treated differently?
Understandably, many parents share, “I don’t want my child to feel that he or she is different. I do not want them to be treated differently.” I can tell you that your child will eventually figure that they are different, that they are “differently- abled.” My concern is when a child on the spectrum is in a school setting and is not diagnosed, teachers form other labels like “disruptive,” “defiant,” “lazy,” “difficult,” “selfish,” “rude,” or “does not belong in this classroom.”
That is why I say I prefer for children to get the proper label. Eventually the child will figure out that they are different. I preferred to take a pro-active approach with my children and that let them know that they are different, and different does not mean bad or less than. Different can be good.
Our Family’s Story
When I told my daughter she had Asperger’s Syndrome, she was in the 4th grade. I wanted her to know that Autism was only one label or word that describes her behavior. These are the labels I described to my daughter. I said, “Sydney, I want to explain to you why you have been having such a hard time at school and making friends, but before I do I want to tell you some very important things about yourself.”
“First of all, you are a child of God. You are made in His image and here are some things the Bible says about that. It also means you are:
- Loved (John 3:16)
- Chosen (I Thessalonians 1:4)
- A New Creation (2 Corinthians 6:13)
- Blessed (Galatians 3:9)
- Victorious (Revelation 12:11)
- Heirs in Christ (John 17:11)
- Fearfully and Wonderfully Made (Psalm 139:14)
- Forgiven (Ephesians 1:7)
I took the time to read these verses to her and speak them over her. I further explained,
“You are not only a child of God, but you are my child and I love you unconditionally. There is nothing you can do that will make me not love you. I will defend you and protect you at school and anywhere because you are forever my child.
“You are gifted and talented in music and art.
“You have a loving heart for animals.
“You may not know how to tell people that you love them, but I know that in your heart you love people and you try to help people in your way.
“You are a wonderful reader.
“You are gifted in math and science.
“You are so many wonderful things. These things are who you are.
“But you know how you have had struggles at school and getting in trouble and making friends? That is because you have something called autism. Autism makes it difficult for your brain to understand some things, and it is why you get frustrated sometimes and things bother you so easily. That is autism.
“I will never allow you to use autism as an excuse to fail. I will never allow you to use autism as an excuse for bad behavior. I will also remind you that you have Asperger’s but you get to decide if Asperger’s has you. Asperger’s is a condition you have.
“It does not have to define who you are because you are so many other wonderful things. Asperger’s causes some things to be hard but it has some gifts too like your memory for details, your ability to solve math, and your wonderful vocabulary.”
How Sydney Responded
“What did your daughter do about her diagnosis?” some people ask. “How did she take it?” These thoughts have been reinforced for the past 5 years. Let me share with you the essay Sydney just wrote for 9th grade composition. Her prompt was, “Write about a core belief that you hold dearly and be willing to share with the class.” Below is that 500-word essay.
People all over the world face challenges, struggles, and difficulties. The question is, will they let that obstacle define them, or will they rise to overcome what was thought to be impossible? Many believe actions are set in stone, and it is not possible to overcome. There are few who do not. I believe that no matter who you are or what you have done, anyone can overcome an obstacle. No matter how hard, how difficult, or how impossible it seems, anyone can overcome an obstacle.
There was this girl I used to know, who was very close to me. She had trouble in school, with friends, and nearly every aspect of her social life. This is because she has Asperger’s Syndrome, also known as very high functioning autism. When she was first diagnosed, the diagnosis was believed to be more prevalent in boys. Few teachers and few administrators knew how to help this girl succeed in school. The special education room was not a proper fit, but she found it difficult to be in the mainstream classroom. When she was confused or having an emotional meltdown, the teachers misinterpreted this behavior as disrespectful or disobedient behavior.
In reality, she was communicating she needed help or further clarification of the instructions. Unfortunately, the girl was suspended for over 50 days of school and expelled from five schools by her third grade year. Many people, including people her parents thought to be supportive family friends, gave up on her. They thought she would never overcome her problems or her struggles. They thought she was confined to a path which would lead to Juvenile Detention.
This same girl who struggled so much in elementary school became an honor roll student throughout middle school. She is commonly referred to as a “goody two-shoes”. In case you have not put the pieces together, that girl was me. How is this possible? Well, I refused to allow others to define me by my behavior and my diagnosis. I was determined to prove to the teachers and the adults around me that their beliefs about me were wrong. I overcame my problems. My faith helped me overcome one struggle at a time. I decided that my diagnosis was not an excuse to fail. I will have to deal with more in my life than my fellow peers, but I refuse to let my problems limit who I can become.
I hope that when my family has finalized adoption that I can help the children who come into our home to believe in themselves. Children in the foster care system have had many struggles and have had many people give up on them. I believe that my story can inspire them to believe that their past does not define who they can become. Nothing is impossible when you set your mind to achieve what you believe.
Do not be afraid of labels. Diagnostic labels are helpful to help you help your child get the services they need. Remind them of who they are, not what they have.
Stephanie C. Holmes, M.A., is an ordained minister and Licensed Christian Counselor with the Board of Examiners for Georgia Christian Counselors and Therapists and was formerly an LPC in North Carolina. She is a Board Certified Christian Counselor through the AACC’s Board of Christian Professional and Pastoral Counselors and a Certified Autism Specialist. Stephanie’s career path changed when her oldest daughter was diagnosed with Asperger’s Syndrome in 2004. She began to change her focus to the world of IEPs and 504 educational plans and understand how to help special needs students in the classroom. In addition, she also helps families deal with their frustrations and challenges having a special needs child. Stephanie practices counseling at her home church, Calvary Atlanta, and advocates for special needs families.