Navigating an Autism Diagnosis: Our daughter’s journey
The Early Signs and Seeking Help
Navigating the world of autism, ADHD, and neurodiversity can be a challenging and often overwhelming experience for parents. For our family, this journey began when our daughter was just three years old, and it took us five long years to finally receive a definitive diagnosis of autism.
As a first time mother, I had no benchmark as to what was ‘normal’, I remember when I first found out I was pregnant, I had researched every type of pram, cot, how to swaddle a baby, whether to bottle or breast feed. However once my daughter was here, I realised how grossly unprepared I was. We spend all this time preparing for the birth of a child, but when that child is here, it feels like everything just ‘stops’. As the baby transitions to a toddler, the visits from family, friends, work colleagues seems to drop off as everyone wants to see and hold a baby, but once the baby grows up, the novelty wears off.
I had downloaded every single app to help me ‘track’ my daughter’s development, I checked into wonder weeks daily. Whilst I was struggling immensely with managing her behaviour, however I thought the issue was my parenting, or the change of giving her a sister.
The early challenges and signs
As a baby, I never felt that Ava bonded with me, this no doubt contributed to my post partum depression, I watched other babies snuggle into their mothers, yet Ava never hugged me, a hug would never provide her comfort, I was sure the problem was me.
3 years old was when I really started to struggle with my daughter’s behaviour, she was having major meltdowns, throwing herself on the floor meltdowns in the middle of shopping the shopping centre. We could never get in the car and drive any distance without her having a tantrum. I can’t recall the number of times i had to pull over and burst into tears because I couldn’t take the whinging and screaming.
Challenges with Bedtime and Tantrums
Bedtimes were the worst, when she transitioned to a bed she wouldn’t fall asleep organically without my husband and I having to lie with her for hours. No matter how tired she was, it was like the second bed time struck, things just exploded. We did everything by the book, we had a structured bedtime routine, dinner, bath, bed, story.. yet that made no difference. The pressure it was placing on both my husband and I can never be articulated in words, at 10 or 11 pm at night, we would still be sitting next to her in bed trying to settle her. Yet her sister who was 2 years younger seemed to have no trouble, her sisters’ only challenges were being disrupted at bedtime by Ava’s yelling and tantrums.
Keeping her entertained was impossible, I could never set her up with barbie dolls, a game, arts and crafts without her requiring me to sit down and do the same thing as her. With 2 little kids, I could never get anything done around the house, making dinner was impossible, having a shower was impossible, every time i went to the bathroom she would be sitting at my feet, yet her sister was just doing her own thing. I tried to give her an Ipad to keep her occupied, yet unlike every other kid in the world (it felt), she would never just sit down and watch useless youtube videos. I found myself begging her to watch the ipad, which felt so counter intuitive.
I found myself an anxious mess, from the moment i woke I would dread the evening, getting her into a bath was a headache, she would scream and resist getting in, and washing her hair required me to mentally prepare for the experience days in advance. Dinner was a dread, she would never try any new food, for years I felt like she was going to develop rickets as she would only eat white pasta and cheese. Despite loving fresh fruit and vegetables, I found myself giving in because i knew if she didn’t eat, bed time would become an even bigger disaster.
I felt like I was going mad, everyone around me praised my daughter, she was so quiet, well mannered, well behaved, the total opposite to what we were seeing in the safety of our own home. I tried to write this off as i’m doing something right, she knows how to behave in public, yet I was struggling, noone believed that this sweet girl was pushing me to breaking point.
Starting school and Friendship Struggles
I thought that school would change everything, it did, but in the worst possible way. This little angel was so excited to go to school, yet every afternoon when I picked her up, she would totally loose her mind. I remember the first week of school she got a wiggly tooth and a bit of blood in her mouth, when she saw me she screamed uncontrollably. Her reaction was so out of sync with the problem.
Every single day she would loose the plot when she saw me and this wouldn’t stop until she finally fell asleep at 11 pm at night, as the year went on she started to struggle navigating the new dynamics of school and friendships, all of a sudden there were additional kids ‘taking her friends’. I raised this with the teachers, yet they said that she was quiet and well behaved and they didn’t see any issues. Things kept escalating, she never had separation
The Long Road to Diagnosis
The process of getting a diagnosis was not straightforward. We first saw our GP when she was 3, due to covid it took years to get an appointment. Finally, through my own diagnosis, I was able to get a referral to a paediatrician for her. When she was 7, she as diagnosed with ADHD which made sense as i had just been diagnosed.
Finally a diagnosis
Unfortunately this diagnosis and Medication helped, but only to a point, as she went into grade 1 and grade 2, things just went from bad to worse with meltdowns and bed wetting was a frequent occurrence. The social issues kept escalating, it was at this point, someone flagged autism with us. This made sense, and at the age of 8, our paediatrician sent us for a behavioural assessment and autism diagnosis.
Her assessment came out surprising, she was above average intelligence, yer her literacy and numeracy skills were well below her age level. She was diagnosed with Autism, immediately deeming her eligible for NDIS and providing me some initial comfort that the problem wasn’t me.
Autism diagnosis – a parents grief
By the time we finally received the diagnosis, it made alot of sense to me and initially provided me with a sense of relief as with the diagnosis, came a path forward. However pretty quickly, this relief was replaced with grief. I found myself crying regularly, grieving for my daughter’s challenges and struggles, grieving because I didn’t pick this up earlier, grieving because i know that there was no ‘quick fix’ and that she would have to navigate this for the rest of her life.
I felt saddened knowing that she has spent all of her life trying to conform to a world that she didn’t understand or organically fit into. It broke my heart appreciating how hard she had worked to mask her symptoms and try and fit in. I started to fill this grief with research and did everything i could to process autism. I found a great deal of comfort in reading Dr Tony Attwood’s work and listening to his podcasts and youtube videos, he has done alot of work of autistic girls and masking, and refers to it as the Jekyll and hide syndrome.
Embracing Neurodiversity
As my grief started to dissipate, I started to see the light at the end of the tunnel, this grief was replaced by a motivation to do everything I could to support my baby girl, I was her fiercest advocate, I phoned around until I could get her an Occupational Therapist, I did parenting training, I changed the way I interacted with her, because with this knowledge came a better understanding of my daughter.
Whilst it was hard and will continue to be hard, I feel closer than ever to my girl because I understand her now.
Conclusion
Navigating an autism diagnosis can be a long and difficult journey, but it is also a path to understanding and acceptance. For parents facing similar challenges, it’s important to trust your instincts, seek multiple opinions, and advocate for your child’s needs. Our daughter’s diagnosis has not only helped her get the support she needs but has also enriched our understanding of what it means to be neurodiverse.
For those experiencing similar struggles, know that you are not alone, and there are resources and communities out there to support you on this journey.
This post aims to provide insight and hope to other families navigating similar paths, highlighting the importance of early intervention and understanding the diverse needs of neurodiverse children.