This is My Story
“He makes eye contact, so he’s not autistic,” our family doctor said when I brought my then two-year-old son into the clinic. I had a feeling he was–I saw things that made him seem “off.” Since the doctor said he was functioning normally, I shrugged off those thoughts.
But they remained there in a back corner, silently nudging me every time I noticed more issues, such as the way he responded to touch and discipline, sensitivity to loud noise and bright lights, speech impairments, and his strange, intense obsessions with vacuum cleaners and railway crossings. As he grew older, the issues grew more noticeable. Daycare workers and teachers called me in for meetings, saying he needed occupational therapy or a psychological evaluation, but every time I brought him to a doctor, they said he was “fine” because he was verbal.
School Fails
My son had difficulties adjusting to the public school system. He had major toileting and eating problems, he could not keep up physically with the other children in gym class, he was isolating himself, and was drawing strange pictures. Meeting after meeting met me with judgment and criticism while some teachers grilled me on my parenting techniques. I tried every suggestion they offered, but they did not work. He also underwent speech pathology at school to help him pronounce his words better.
Then COVID hit, and all the schools closed in our area from April to June 2020. When they reopened the following September, I decided to homeschool my son due to his toileting issues. He was 7 years old and was still having accidents. I did not want to face another year of dealing with the teachers, and I was concerned about bullying.
The Push for an Autism Assessment
My cousin, who had a tween autistic son, was chatting with me online about my son’s speech problems and sensory processing issues. She said he may be autistic since there were several autistic children in our family tree, and that speech impairments and sensory issues are common with autism. Then I did more research and came to the realization my child could be autistic.
I presented my case to the pediatrician. She doubted my son was autistic and said that he did not have sensory processing disorder (SPD) because he could eat chips and crackers and children with SPD cannot eat crunchy things. But I pushed back, saying sensory issues can be different for each child, that autism runs in his family, and asked her to please put my son on the waitlist at our local children’s hospital which offered a government-funded assessment program. She finally concurred, and the wait began.
The Waiting Game
The hospital sent me reams of paperwork which I diligently filled out and waited for their call. Two years then passed, and I was still struggling with my child’s issues. I enrolled my son in an online school, and he needed special assistance with learning the school curriculum. He had problems focusing and did not want to learn anything that did not interest him. I needed someone with specific skills to assist me. Since he did not have a diagnosis, he did not qualify for special needs services through the online school, and I could not afford to pay for services on my own. So, the wait continued.
Private Assessment Option
I still hadn’t received a call from the hospital, so I started thinking about private assessments with a psychologist or an organization, as the clock was ticking. I asked around for recommendations from other parents of autistic children and found a clinic that was reputable. But I could not afford the $3600 cost to pay up front. Fortunately, a family member offered to pay for this service as she also had a child recently diagnosed with autism. My medical insurance would pay for half of the costs after we submitted the receipts to the provider.
There was a three-month waitlist, but my son finally got a spot in August 2022 at 9 years of age. The assessment took five weeks which included a psycho-educational assessment to address any learning issues.
To this day, I never received a call from the hospital for an assessment.
The Results
When the results came in, I was nervous. The psychologist told me my son met the criteria for Autism Spectrum Disorder. As she spoke about the assessment details, my mind swirled with both sadness and relief. She said even though he made eye contact, he did not make eye contact when having a discussion on a topic that did not interest him. Even though he was verbal, he hardly spoke during a conversation that did not interest him and his speech was difficult to understand. He was also diagnosed with a math learning disorder along with having fight or flight responses to demands and requests, otherwise known as Pathological Demand Avoidance (PDA).
After the Diagnosis
Since the diagnosis, doors for assistance have opened. He got into a school that specializes in teaching neurodiverse children. Public school is not the right option for him. We tried going back twice over the last two years, but it caused his toileting issues to return and his anxiety to spike. They could not assign him an educational assistant due to a worker shortage and overcrowded classrooms.
My son is finally receiving funded tutoring services and is about to start ABA therapy. But it came a little late. If doctors had been more accommodating and up on their autism knowledge, he could have received earlier intervention which he needed when he was two years old. He could have been better prepared for school and we would have had the support and resources we needed back then. However, he is improving since the diagnosis, and I am thankful we received it when we did rather than even later in life.
Early Intervention
Early intervention is key. If you suspect your child is autistic, they most likely are. Autism Spectrum Disorder (ASD) is just that–a spectrum. Each child has their own set of unique challenges and strengths, and no two children are alike. ASD does not have a “look” or a face. Just because one autistic child appears a certain way does not mean they all do.
Trust Your Gut
Trust your instincts. You are their parents; you know them best. Push for an assessment and go private if you have the funding. If you think getting a diagnosis means labelling them, think of the negative, uninformed labelling that may inadvertently occur by others, such as lazy, spoiled, undisciplined, or naughty. A diagnosis will give them the help they need to be successful and fulfilled. It is the best thing you can do for your child.
Contact Us
If you believe your child is showing signs of autism, early screening can help you gain clarity on your child’s needs and the support that will be helpful. Contact IBAA to schedule a free consultation and let us help you help your child.
About the Author:
Rochelle Blaak-Herron is a writer living in Burnaby, BC, Canada, where she lives with her husband, 11-year-old autistic son, and two cats. She has been writing professionally for over 20 years and is a strong voice for parents of autistic and neurodiverse children.”