The Diagnostic Process
- Really Tired
- Feb 3
- 5 min read
Updated: Jun 14
If there’s one thing I’ve learned on this journey, it’s that getting a diagnosis for your neurodivergent child isn’t just a step. It’s an odyssey. A slow-moving, bureaucratic, patience-shattering odyssey filled with endless waitlists. And let’s not forget the cost—because wow, did we pay through the nose to go private. The public waitlists? Eighteen months or more. We simply didn’t have that kind of time.
The Role of Professionals
Each professional played a role in the process, though none had the full picture on their own.
Paediatricians are the guardians, crucial for diagnosis but reliant on reports from multiple sources.
Psychologists conducted assessments, gathering input from daycare, school, and home to form a comprehensive view.
Occupational Therapists pinpointed sensory and motor challenges, highlighting early intervention needs.
Speech Therapists caught communication difficulties that hadn’t been obvious to us.
(Pre)Schools were where many triggers became glaringly apparent—classroom dynamics made struggles impossible to ignore.
The journey wasn’t a single appointment or a magic answer. It was baby steps, layering insights from different professionals, slowly piecing together what each child needed and how best to support them.
Cheese’s Story: The Escape Artist in Training
It all started with a paediatric consult for sleep issues. Nothing too alarming. But then came the biting. And the defiance—or, as daycare described it, “not doing what he was told.”
At home, though? Nothing. No behaviour issues beyond the sleeping struggles and the occasional shark-like chomp. It was confusing, and we didn’t know what to make of it.
The first daycare we tried was rigid. Three-year-olds expected to follow structured routines, with little flexibility. Disaster. Cheese was drowning. We moved him to a preschool that had a more relaxed approach, letting kids pick and choose activities, moving at their own pace. And what do you know? Things improved. For a while.
Then came the absconding.
Everywhere we went, Cheese was looking for an escape route. And if there was one? He was gone. Bolt-of-lightning, Houdini-level gone.
Three and a half years after our first paediatric appointment, at the age of four, Cheese was diagnosed as autistic. At the time, the terminology was shifting—Asperger’s was being phased out (rightly so), and we were advised to research it for a deeper understanding of Cheese’s struggles.
Relief. Finally, we had a name for what was happening. We had tools. We could help.
And then gut-wrenching grief. Because no parent wants to hear that life is going to be significantly harder for their child than it needs to be.
Chalk’s Story: From Angel Baby to ADHD Hurricane
Chalk was the kind of baby that tricks you into thinking you’ve got this parenting thing down. Easy going, content, nothing extreme. Until daycare, starting at ten months old.
Drop-offs became a nightmare. Every single morning, Chalk screamed like he was being abandoned forever. Not just a few tears we’re talking full-blown, inconsolable wailing that lasted up to an hour after I left. It got so bad that I tapped out. My husband took over, and while things didn’t exactly improve, they became manageable. Just.
We made a conscious decision to hold off on school until Chalk was five turning six, thinking the extra time would help. We changed from daycare to a preschool with amazing staff, fantastic facilities, and experience with school readiness.
It was perfect, on paper. But structure was our downfall.
The expectation to sit for writing practice, the rigid group activities, the constant transitions. Chalk was crumbling under it all. We were already on a waitlist for a paediatric assessment when COVID hit. (That saga deserves its own post.)
With everything shut down, we managed to get a telehealth appointment with the same paediatrician who had diagnosed Cheese. She listened, took in the reports, and suspected autism. I wasn’t convinced. I had done my research, and while I only had experience with one autistic child, this felt so different.
Then, preschool reopened, and Chalk was invited to attend a few hours at his future school for orientation. The wheels fell off spectacularly.
Did you know a five-year-old could send a preschool into lockdown? Yup. Neither did I.
Panic calls to the paediatrician got us an in-person appointment much sooner than expected. The moment Chalk walked in, it was pure chaos. He was bouncing off walls—literally. Opening every drawer, touching everything, talking a mile a minute, barely stopping for breath.
Within five minutes, the paediatrician ruled out autism.
Instead, she (not just any paediatrician, but a behavioural specialist) declared Chalk had the most extreme case of ADHD she had ever seen.
Hooray?
Top Tips for Navigating the Diagnostic Maze
If you’re in the middle of this process, know that while the waitlists are long, there are steps forward. Keep asking questions, keep pushing when needed, and trust that each small step leads to a clearer understanding of your child’s needs.
Be the squeaky wheel. If you stay quiet, you risk waiting even longer. Advocate fiercely.
You are the project manager. You will need to facilitate sharing of reports and key outtakes between professionals.
Keep a diary. Every symptom, behaviour, conversation, concern —track it all.
Follow your gut. If a diagnosis doesn’t feel right, seek a second opinion.
There is nothing wrong with your child. They are not broken, and they do not need to be fixed. The world simply wasn’t designed with their needs in mind. But with the right support, they can—and will—thrive. This becomes much clearer in hindsight, especially when navigating a deficit-focused medical model (much more on that later!).
Just remember, nobody knows your child better than you do.
Resources: Lived Experience & Professional Insight
When looking for information about autism, PDA, and ADHD, we prefer sources created by those with lived experience. Autistic, ADHD, and PDA individuals bring first hand insight that traditional medical and educational perspectives often miss. However, professional expertise also has its place, especially when it embraces a neuroaffirming approach rather than outdated deficit-based models.
Here are some of our favourites including neurodivergent voices, professional perspectives, and advocacy organisations:
Autistic-led advocacy group fighting for the rights and inclusion of autistic individuals. Strong focus on policy change, self-advocacy, and rejecting harmful therapies.
A collective of autistic writers offering deep, personal perspectives on sensory processing, masking, burnout, and advocacy.
An autistic educator, parent, and advocate who offers professional courses and guidance with a lived-experience lens. Focuses heavily on supporting PDA and AuDHD children.
An autistic speech-language pathologist (SLP) who breaks down neurodivergence in an accessible, engaging way—especially useful for parents and teachers.
The go-to resource for understanding and supporting PDA children and adults. Run by PDA individuals and parents. Advocates for low-demand, autonomy-based strategies.
A UK-based advocacy and research group focused on strengths-based ADHD support rather than a disorder-based view. Yellow Ladybugs
An autistic-led charity supporting the inclusion, visibility, and empowerment of autistic girls, women, and gender-diverse individuals. Their advocacy and resources are neurodiversity-affirming, with a strong focus on community connection and lived experience.
Dr. Ross Greene – Lives in the Balance
A clinical psychologist specialising in Collaborative & Proactive Solutions (CPS) a low demand approach to behaviour that is highly effective for PDA and ADHD kids. Dr. Mona Delahooke – Brain-Body Parenting
A clinical psychologist specialising in neurodevelopmental and behavioural challenges. Her neuroscience-based approach helps adults understand the nervous system behind behaviour, making it especially supportive for children with PDA, autism, and ADHD.
Speech Dude (Chris Wenger)
A neurodivergent speech-language pathologist who creates neurodiversity-affirming communication tools, especially for ADHD, autistic, PDA and AuADHD students.
Dr Naomi Fisher
A clinical psychologist and author specialising in self-directed education, trauma-informed approaches, and the psychology of learning, particularly for neurodivergent children, including autistic, ADHD, and PDA learners.
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