There is a saying that every person is a world unto themselves. When my son was about two, I had a physical therapy session in a small office. While I worked my turned ankle, my son took all the therapy balls, lined them up according to size, and then divided each size ball by color.
The therapist exclaimed, “I’ve never seen a child do that!”
“Oh, he does that with everything – He loves to organize his world!”
Little did I know that what I saw as my son being organized was a sign of his autism.
As every person is their own world, each child experiences the world in their own way. It is when these experiences interfere with interacting with the world when interventions are helpful. According to the Centers for Disease Control and Prevention (CDC) early signs of autism may include not responding to their name, avoiding eye contact, not smiling when smiled at, and strong reactions to certain tastes, smells, or sounds. A child may have repetitive motions like rocking their body, flapping hands – or sorting therapy balls.
Kelly Conlon, Director of Support Services at Autism Up kept asking her son’s pediatrician, “Shouldn’t he be talking by now?” Conlon was repeatedly assured that “boys take longer to talk” and that she shouldn’t worry.
Delayed speech is not present in all people with autism, and you might notice that your child doesn’t talk as much as their peers or may repeat phrases. It may appear that your child does not engage in pretend play or plays with toys in a way that perhaps they were not intended. For example, spinning a toy car’s wheels around instead of zooming the car around on the floor.
Why might you see certain behaviors?
People with autism often respond to the world differently due to their unique sensory processing differences which includes a higher perceptual capacity. This means that they are able to process more information at once than their non-neuro-divergent peers and it also means that a person may take longer to respond to a question. That longer response time might not be as noticeable in a young child but may stand out once your child starts school.
You may see a person may go from being hypo-sensitive to a sense one minute to hyper-sensitive the next: craving a bear hug and then pushing you away once the tactile need is satisfied. You might see repetitive behaviors that could present in hand-flapping, rocking, arranging and rearranging objects, repeating sounds or words as the person tries to regulate themselves, or to make their bodies feel more at ease. These repetitive behaviors are called stimming.
If the behaviors include self-injurious behavior (SIB) such as head-banging, the parent or caregiver should work with an occupational therapist to help create a sensory diet with replacement regulatory strategies.One child may not have all these signs but if you have any doubts, it is best to have your child evaluated.
Evaluations
There are really two evaluations: the medical and the academic.
Here in Monroe County, if you would like a medical evaluation so that you may get social services at a later date, you should get an evaluation done by a professional who administers the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2) which is an activity-based assessment administered by trained clinicians to evaluate communication skills, social interactions, and imaginative use of materials in individuals.
Please remember, getting an autism diagnosis is not the end of the world – it is also not a golden ticket to receive supports and services from your child’s school district.
Kelly Conlon initially felt a grieving sadness when she heard her son’s diagnosis, that sadness was edged with relief knowing she could move forward to explore where to support her son. Regardless of his diagnosis, Kelly knew that her son’s bright smile was always going to lift her spirits.
The other needed evaluation for a child to receive therapies like occupational therapy (OT), physical therapy (PT), special education instruction (SEIT), or speech language therapy (SLT) is an evaluation by Early Intervention for children under three years of age. If your child is over three, you must register your child in the school district where you live and then request a complete psycho-educational evaluation. The results of this psycho-educational evaluation will pinpoint where your child needs supports like occupational therapy, speech, or physical therapy.
What you may need for an evaluation
- A completed psycho-educational evaluation from school or from the early intervention evaluation.
- A referral from the child’s primary care provider.
- A questionnaire for the parent or caregiver.
- A questionnaire for either an Early Intervention pre-school provider or school provider.
Each evaluation site will have their own Intake Process. A general rule of thumb would be to complete and return the required papers as soon as possible so they can be reviewed and then a date for the evaluation can be determined. The wait times for evaluations vary.
When my son was evaluated in 2002, I was thrilled we only had to wait eight months for our appointment. Today, many families are frustrated by the long wait times, and it is important to remember that there are only 758 board-certified developmental-behavioral pediatricians in the United States for the approximately 19 million children with developmental and learning concerns.
What to do while waiting
In our community there many organizations that have supported activities and Autism Up has support groups to talk about resources and strategies.
Notice where your child has difficulties. If your child struggles with language, read. Get down on their level and play with what interests them. I became an expert in Transformers – the robots in disguise, not the electric ones – and we created a song to help our son transition from playing with his action figures to doing other not-so-fun activities like eating dinner. Hard on the ears, but it was an effective transition tool.
You may take that waiting time and use it to learn more about autism and the types of services that are available to help your child. You may want to take advantage of the Rochester Museum and Science Center’s monthly Sensory Sunday when the number of guests is limited and the lights and sounds of the exhibits are lowered. There are many inclusive recreation sites available.
You might also start a binder with your child’s interventions. The Early Intervention or school evaluation will probably happen before the medical evaluation, and it is important to track areas where your child receives support. You may consider asking a trusted family member or friend come with you to your child’s evaluation to take notes and to make sure your questions get answered.
Remember your child is a child – so play! Create silly songs for daily activities. Become interested in the things that interest your child, so your child is more likely to engage with you. Look at the world from your child’s point of view – it’s magical place!
Resources
Autism Up’s Supports and Services
Providers who evaluate for autism for children and adults
Prepare for your child’s medical evaluation
Mary Brzustowicz has two college-age children, one who was diagnosed with autism at two-and-a-half – she has been advocating ever since. Mary co-trains Autism Up’s Parent Effectiveness Program and is a Family Navigator at Autism Up and at the University of Rochester’s Developmental and Behavioral Pediatrics. As a Family Navigator, she guides and supports families to learn how to best help their children, and she truly loves seeing how families grow in confidence and love.
Kelly Conlon is a wife and proud mother of two amazing children; Tyler and Madeleine. She is passionate about inclusion and making connections in the community. In addition to her time at Autism Up, she is the co-founder of her district’s SEPTO, Girl Scout troop leader, and avid sports fan. She enjoys gardening, spending time with her pets and cooking. Kelly is passionate about helping others, being a supportive listener and helping individuals and their families find the resources to help them live their best lives.
