Need to know: We hear the personal story of a parent who talks about the joy of seeing your child overcome ASD and all the challenges that come with that.
Q1. Every family has a unique and different story. Tell me a little bit about yours.
We have one child Ted, who is turning 11 in September this year. He was diagnosed with ASD when he was 2 years and 1 month old. Ted attends a mainstream public school. Both my husband and /I have been married for 17 years. I have worked from home since our son was 3 months of age. My husband’s niece was diagnosed with Aspergers as a young adult.
Q2. Many parents say that they knew from very early on that their child was different. What made you question whether your child’s behaviour was typical for their age?
I helped to look after and raise my two neurotypical younger brothers, so that provided base developmental guidelines for me prior to having my son. Very early on it was evident that Ted was different.
Ted’s behaviour at an early age:
- He was a very poor sleeper as a baby and toddler. He didn’t sleep for a full night until he was 2 years and 7 months old. Prior to that point he slept like a new born, waking up every 2 to 3 hours and not being able to self settle. I had been to Tresillian and had seen a private sleep therapist who were unable to assist or improve Ted’s sleep.
- He had lots of meltdowns, and was very easily frustrated and upset. He was very difficult to calm down.
- He was unable to self-soothe.
- His speech was delayed. He did not mimic speech at 16 months of age, if he wanted something he would point and say “uh”.
- His development of play skills were delayed, with limited and repetitive solitary play.
- He did not walk until 16 months of age.
- He would not respond to his name and would not look you directly in the eye.
- He wasn’t interested in the activities of others and did not often show or share things to his parents.
- He engaged in repetitive behaviours such as opening and closing locks and doors and staring at car wheels turning.
- He was entirely routine oriented. When taken to the park, the car had to be parked in the same spot near the entrance and he needed to enter the park on the same path. Failure to do so would end in a meltdown and we would have to leave.
- He had issues transitioning to solid food. Upon performing a feeding assessment at 17 months old, it was determined that he had delayed oral skills, demonstrated difficulty with lingual strength lateralisation and elevation as well as decreased labial strength.
- He was a very fussy eater in terms of foods and textures.
- The feeding therapist advised that my Ted should undergo a developmental assessment as there were concerns regarding his behaviours. She also asked if there was anyone in our family that may have autism. We had noted that our niece was diagnosed with Aspergers.
Q3. How did you go about getting your child assessed and what did the diagnosis mean to you and your family?
Ted’s developmental and behavioural paediatrician determined that he had a speech and language delay and behavioural difficulties. He confirmed concerns regarding a possible ASD diagnosis and suggested a diagnostic assessment at Tumbatin Clinic.
At 2 years and 1 month, Ted was taken to the Tumbatin Clinic at the Sydney Children’s Hospital Randwick where he was assessed for autism spectrum disorder. It was the Tumbatin Clinics opinion that he met the criteria for Autistic Disorder.
Getting an ASD diagnosis helped to explain our son’s behaviours, and permitted early intervention via speech therapy, occupational therapy and behavioural support.
By getting an ASD diagnosis for Ted, we were able to learn and understand how he viewed the world and how we could assist with his development of communication, behaviour and social interaction.
Q4. What diagnosis has your child received and are you eligible for NDIS or other services?
Ted has been diagnosed with Autism Spectrum Disorder.
When he was diagnosed, he received funding under the “Helping Children with Autism” (FaHCSIA) package, through the Autism Advisor. When this ended, he was eligible for the NDIS.
The NDIS funding is self managed. This gives us the flexibility of being able to choose our own therapists.
Q5. What kinds of things does your child struggle with and what therapy, strategies and accommodations have you used that made a huge difference and which ones didn’t work?
Ted undergoes fortnightly occupational therapy, speech therapy and psychology sessions.
The occupational therapy focuses on the development of our Ted’s fine and gross motor skills. Speech therapy and psychology assist with his development of communication, social interaction and behaviours.
The biggest behavioural challenges that Ted is currently facing is perspective taking, inferencing, maintaining friendships and sarcasm.
Each of the various therapies have made a difference to our Ted’s development and continue to do so over time.
Q5. Is your child medicated? What are they on and how long did it take you to get to the right combination?
No, Ted is not medicated.
Q6. Our communities, schools and society in general are built for neurotypical people. What have been some of your biggest challenges to date and what has helped you navigate them?
Biggest challenges to date:
- Difficulty with people in the community not understanding what ASD is, and how each child with ASD will present differently. On the whole, I think it is difficult for communities and society to understand the behaviours and challenges that people on the spectrum face in daily life if there isn’t someone that they know that has ASD.
- Substitute teachers assuming that Ted functions/behaves the same as neurotypical children in the class as our son is high functioning.
- Teachers not having been trained how to teach high functioning children with ASD in a mainstream school.
Strategies to assist Ted at school:
- At the start of the school year, discuss our Ted’s triggers and behaviours with his teacher, and what they can do to help him in class.
- Provide an open discourse with the teacher throughout the year to determine if they require assistance from the psychologist, speech therapist and or occupational therapist.
- Update the teacher with psychological, occupational therapy and speech therapy reviews.
- Playground buddy.
- Chill kit for the classroom including paper to rip, squishy toys to squish when he gets angry or frustrated.
- In the past, Ted had used an anger chart to communicate the level of frustration or anger when he could not use his words to describe his feelings.
- Using a Howdahug chair during floor time for postural support and core strengthening https://www.howda.com/howdahug-sensory-chair/.
Q7. What are some of the things that you celebrate and love about your child that help you empathise in the midst of life’s storms.
We celebrate the small wins. There is nothing better than seeing your child overcome a huge hurdle that they have been working on for a very long time.
We love that Ted is very kind and with continued therapy and work, has shown us that he can experience and feel happiness. Seeing Ted smile after many years of tantrums, meltdowns and severe anxiety makes my heart swell with joy and love for him.
Q7. Do you have books, podcasts or other resource recommendations?
Autism Awareness Australia https://www.autismawareness.com.au/
The Australian Parenting Website https://raisingchildren.net.au/autism
Q8. When we care for others it’s important to put on our “oxygen mask” first. How do you look after yourself?
I try to take time out for myself, so that I have “me time”, and do things that make me happy such as sewing, knitting or listening to music.
Seeing your child overcome ASD is a great feeling for any parent and we hope you learned something from that personal anecdote.