our children’s presentation and diagnosis journey

It all begins somewhere. For some of us we had been in a family surrounded by neurodiversity, for others it was our first experience. We shared these stories of our children and the things in their presentation that brought us to knowing that they were not neurotypical.

Because these are our children’s stories, we have shared them in a way that protects their confidentiality. We have done that by changing their names and not mentioning the names of the schools and organisations that they have engaged with. This is not about ‘naming and shaming’ organisations, nor is it about promoting a service or activity. We simply wanted to share our stories about our experiences, in the hope that others with similar experiences could see they are not alone.

“Elle’s Story”

I had four miscarriages before I had my first healthy baby. He was full on from the get-go, crawling and walking early, although not by much. By the time he was nine months old I was pregnant with my second child, something I was never going to complain about given my history.

He was 17.5 months old when his sister was born, and I did all the things they recommend. I included him in the care and interactions with his sister, and with my husband we created a new family of four. Early on I noticed that his sister was different. Whereas my son had been alert and engaged even as a newborn, she didn’t make eye contact and engage at all. She consistently watched all the milestones go by, and from birth she had a loud cry, in line with that of a much older baby with developed lungs. Her lungs were the only thing that developed early, and she crawled, walked and talked a good six months later than the standard window. In fact she never crawled, eventually developing instead a ‘bum shuffle’ that propelled her around whilst sat upright. She also would not be soothed by anyone other than me, and bedtimes became a many hour marathon of crying, settling and wailing again when she would stir and realise I had the audacity to place her down. This continued until she was four years of age.

In the interim my relationship with my son started to change, with him becoming more active and, on occasion, literally climbing the walls.

I had postnatal depression with both of my children and I blamed myself for what was happening. ‘She knows I’m not connected to her’ I would think. ‘I had them too close together’ was another pointless thing I blamed myself with back then.

By the time my second was one and my oldest was two and a half my then husband’s job took us overseas. It was a remote community without much in the way of medical support, with a basic hospital that could do the job if you broke an arm or had appendicitis, but would not have known the first thing about neurodiversity. I’m talking over 20 years ago. I had raised concerns in the UK before we moved, but had been told ‘they all develop at different rates’ and I had accepted that, putting many of my concerns down to my own inadequacies of being a first time parent, having postnatal depression and coming from my own background of childhood trauma so not having a good model of how to parent.

So when my marriage started to wobble for a variety of reasons, I really didn’t have much capacity for anything. I flew back to the UK without my husband and with my two young children (aged two and a half and four by then) and I became a single parent. My husband withdrew finances immediately and although I continued to live in what had been our family home rent free (he paid the mortgage at that point) I had no money to live on and had to go to work full time. At this stage my focus and attention was purely on survival and supporting my children financially. I had little time or energy to place on their development or any of the behaviours that were starting to show up. As I progressed through the divorce and bought my now ex husband out of the house, my childcare bill was bigger than my mortgage. I had little to no family support, with one aunt who would sometimes help out and the weekend each fortnight that they went to stay with their Dad.

When my son first went to school I cried as a crossed the playground. It was a mixture of acknowledgement of the end of an era and the beginning of another, as well as pure relief. My son only ever had one type of parent’s evening, where the following four statements would be said and the only variation would be the tone of voice it was said in. ‘He’s really clever, he gets distracted, he distracts others,and he’s not meeting his potential.’ I learned to tell by the shape of the shoulders of the teacher which slant would be placed on these statements - whether it was fondness or harshness, essentially with the exception of the tone of voice of the teacher, the parents evenings for my son were the same for the whole of his school career.

When my daughter went to school I had a different experience. The school she attended had a reception class with a large glass window that gave a vantage point for the whole path that led to the school. For two years I got to listen to my daughter scream and cry at the top of her lungs to me walking away from the school, with her face pressed against that window, and the strained wail of ‘Mummy, don’t leave me’ following as I walked and cried my way along the path. Many days I started work with my face a mess, I learned to apply my mascara after school drop off. I felt I had no options, working was mandatory if I wanted to move us forward. I was judged, despite the fact I was working harder than anyone else I knew to keep them fed, clothed and safe. I know many single parents would have claimed benefits, or chosen not to work, but I am proud to say that I knew then if I did that I would never build anything better for us all, and we would always be in survival mode. I wanted more for us.

So again, I blamed myself for being a working single parent when my son’s behaviours started to show up at school. He had moments of acting out, fights in the schoolyard, his impulses even led to him bringing home an item from school that didn’t belong to him - a source of great shame to us both. That really didn’t help the judgement from others. By the time his impulse control was none existent, and his emotional dysregulation off the chart, I had to fight to get considered for assessment. Despite the fact that the school were raising concerns with me, they fought me on my request for him to be assessed, stating both outright and hinting that my parenting was to blame. I made attempts to make connections with other parents and to have playdates with their children. I was snubbed almost relentlessly, my status as single parent and my son’s behaviour not helping my endeavours. When mentioning this to a teacher she replied ‘perhaps it was the incident in the art room.’ What incident? I had never been made aware. When raising this I was told they would usually mention this at school pickup, but because I worked the children went to after school club, and so I had never been told of many of the incidents that had happened, but the other parents had been.

Around this time after being a single parent for two years I met my now husband. We began our relationship in stolen moments, meeting for lunches or at the weekends when my children were away. We proceeded like this for a couple of months before I introduced him to my children.

By the time I raised my concerns again and pushed above the school’s head, ADHD diagnosis in the UK had become a political issue rather than a medical one. My son was assessed and they indicated that he had ‘some autistic tendencies’ and diagnosed him with ‘oppositional defiant disorder.’ I disagreed with the diagnosis but took it nonetheless as I believed it would access some form of support for my son. In the overstretched NHS It did not.

In the meantime my daughter was consistently failing at school, again following the trend of being behind the milestones. This was something I also blamed myself for, despite the fact that we did all the homework set by the school, and I even paid for a specialist tutor to come to the house and teach her to read because she was still struggling to do so two years after her peers.

Eventually I gave up on the school and moved them to a private school. We made immediate progress with some things, and the school finally listened to me and the experiences I was having at home. We worked out a plan for both my children, with transparency about their performance at school and home so that we could work together in order to get the best results from them. The school acknowledged my awareness of my children, and to finally be recognised for all the effort I was putting in made a huge difference to me. It was worth eating beans on toast for months at a time to pay the school fees!

Finally after coming to Australia both my older children have been diagnosed with Audhd (at age 21 and attending university) and ASD level 1 (at age 19). I have two further children, one of whom is diagnosed ADHD and the other is, as we say at home, ‘quirky’. In later years I have been led by my children as to whether to get diagnosis or not. I managed all those years without one, so I had allowed them to indicate when or if they wanted to be assessed.

Story from ‘Beth’

Category One “Naming The Problem”

My child did not engage with other children during playgroups, which necessitated my constant supervision. Additionally, her meltdowns were becoming increasingly frequent and more intense.

Whenever we participated in activities like grocery shopping, playgroups, or library story time, my child struggled to sit and engage like the other children. Attempts to encourage her to participate often led to resistance and meltdowns, ultimately requiring us to leave to avoid disrupting other

Anytime we leave the comfort of home, my child can become easily overwhelmed—a pattern that has been present since she was 13 months old and continues now at age 5. However, she is beginning to recognize the early warning signs in her body when she's nearing a heightened emotional state, allowing her to exercise a bit more control over her emotions. My presence seems to help her manage this, as I can observe her triggers and gently prompt her to take a 'body break,' use a fidget, or have a cuddle to help her cope with rising anxiety and manage her 'red beast.'

Category two “exploring the effect of the problem”

My child can find even the simplest day-to-day tasks incredibly challenging—not due to being 'difficult' or 'naughty,' but because she struggles to process the world around her. For instance, something as routine as taking a shower can trigger a cascade of overwhelming thoughts: the feeling of getting wet, concerns about the water temperature, the sensation of soap, or the discomfort of brushing her hair, which feels as painful as a bruise. Even the chill after getting out of the shower can make her irritable. Given these challenges, avoiding a shower feels far less stressful to her, often overshadowing the importance of personal care and hygiene.

My daughter's high needs make it extremely challenging to plan social outings, such as lunch dates or dinners, as she struggles with crowded settings and cannot sit still for extended periods. This often requires me to step away from my company to tend to her needs, which may unintentionally make others feel overlooked, though that is far from the case. Her complex behaviors have also limited our access to family and friends for support, making much-needed respite or date nights with my husband rare. I often wait until she’s asleep before having a sitter over, as this is the only way they feel comfortable helping.

I find my self triggered by her behaviour and I tend to react instead of empathise and reflect her needs, I have learnt to be more calm and to use creative ways to get the tasked done however with my own struggles with ADHD I feel the pressure of using my whole brain all day long and find my self feeling very emtionally exhausted and not excepting help because I know her best and I know im the best one to help her suceed. I keep needing a break but not wanting to take one because I have so much guilt because it is a struggle most days and I watch nurotypical child and  mothers and wish my daughter could have life a little easier for herself and me.

I often feel physically and emotionally drained, and for a long time, I felt isolated—until I found two close friends who also have neurodiverse children. With them, I can speak openly about the challenges without fear of judgment, something many neurotypical parents might not fully understand. Although I’ve wanted to pursue further studies for years, the mental load feels overwhelming, as my energy is devoted to supporting her daily needs. My goal is to help her develop stronger emotional regulation skills so that, when I do eventually begin studying to advance my future, she’ll have the tools and strategies to navigate daily challenges, social interactions, and emotional regulation, enabling me to step away knowing she’s in capable hands.

Category Three “Evaluating the effects of the problem”

I often find myself withdrawing out of a fear of judgment—both toward my daughter and myself. Although I still take her places, I experience a lot of anxiety, uncertain about what might trigger her or whether I’ll be able to manage if a situation arises. This has impacted my friendships, as I’m often unable to offer help or support in the way I’d like, knowing I would need to bring her along, which might limit what we can accomplish. Over time, I feel I’ve lost connections with friends and family because I distance myself to avoid judgment. However, where I am in life now, I’m grateful to have found friends who truly understand—many of them are on a similar journey with neurodiverse children. We share a deep empathy and support for each other’s motherhood journeys, which has brought a new sense of community and understanding into my life.

Category Four “Justifying the Evaluation”

I believe my values have shifted over time. I’ve come to appreciate the diverse ways in which people’s brains work, and I regret my past judgments of other mothers, especially now that I understand what my daughter goes through. While my dreams have evolved, I remain hopeful that they’re still within reach. Thanks to my daughter, I’ve learned the patience to wait for my turn to pursue my goals. My greatest achievement is raising my children, and my biggest dream is to see them grow into emotionally regulated, balanced individuals, sparing them from the struggles I had to learn to manage as an adult. I will continue doing my best, and I’ll give myself grace on the bad days, because what we face daily is often more challenging than most realize. Everyone deserves a little respite.

‘Caitlyn’s’ stories

Nicholas’s story 

I began my motherhood journey at a young age. I had not long finished high school, and was just 18 when I had my first son. I was no longer with my son’s father and was parenting alone.  Since it was my first child, I really had no idea what to expect. He was a very fussy baby who struggled with learning to feed and would scream for hours. In the early days I remember thinking I might die from sleep deprivation. By 5 weeks he started to smile and things started to seem a little brighter.  

Around 12 weeks I noticed he would copy sounds – pitch perfect. He would match the hum of the vacuum cleaner, the sound of the blender and of course music. I thought it was incredible and because I am musical too, so I was thrilled.  

By about 6 months  I had already noticed how clever he was, he would cough to get my attention and I would come running  straight over to him and he would smile away, I thought that was unusual and cheeky but didn’t think anything more of it.  

By 2-3 years old, people started to comment on how clever he was, he spoke really well for his age and would memorise books and could recite them word for word. And while there were so many ways in which he seemed to be developing at the expected rate or  even above average, I also started to notice more of the times where he was struggling.  

He would have big emotions and meltdown over reasonably minor things. I remember he would bang his head on the tiles, glass door or walls. It wasn’t a little tap, it was with all of his strength and really hard.  I was really concerned and asked a GP about it, he assured me he would be fine and would grow out of it, it was just normal toddler behaviour. When he had a visit to Kindy they said “at first we thought he broke his arm or something from the way he was screaming but it turned out someone just took the toy he was playing with”. They talked about how he had quite big reactions and feelings but didn’t really elaborate. 

Because I had a nephew on the autism spectrum, I was aware of some of the signs and I started to question whether all the these things that were happening were more than just tantrums and big feelings. I started to ask whether any of his kindy teachers thought there was anything I should be worried about with him. They all said, “every child develops at their own pace and that they didn’t think there was anything to worry about”.  The same thing happened through his first year of school as well and it wasn’t until year 1 where I asked his teacher if it be worth seeing a paediatrician and he said he thought it would be a good idea. I was relieved to hear someone else was seeing the things that I was concerned about. I got him on the waitlist for a paediatrician but due to living in a small country town the waitlist was at least 12 months long.  

During that time, Nicholas was struggling at school especially socially. He would have big meltdowns, cry every day and would sometimes refuse to do the tasks set by the teacher. He hit a child with his hat once and I had a phone call from the principal. Things were getting more challenging and overwhelming for Nicholas. The older het got the more demands there were. We were noticing more and more areas where he was just not able to cope. By the time he was diagnosed he was 8 years old. 

My first and second child got diagnosed with ASD within a few months of each other. The presentation was totally different for my second son compared to my first.  

Isaac’s story 

Isaac was born and I remember feeling terrified of how I would cope since my first son was a difficult sleeper initially, but he was the opposite, he was quiet and reasonably easy to settle if swaddled up nice and tight. I felt so relieved because I was able to cope so much better this time around and assumed this was because he was my second child and I knew what to expect so I was calmer the second time around.  

Isaac seemed to be developing typically initially and at 8 months I remember him saying “mum mum” and “dada” however by 12 months he had regressed and no longer said those words. He would stare up at lights and ceiling fans and just watch them, when you would call his name, he wouldn’t respond at all he was so engrossed in watching them. I noticed he seemed to be  a bit behind the babies in his baby group he was the last to walk and they seemed to be talking more than he was. At his 12 month check up, the nurse noticed that he was a little behind in meeting some of his milestones and was referred to a program at the hospital with a speech therapist, occupation therapist and physiotherapist. They attend this until the age of 2 so they can keep an eye on how he was developing. The first assessment they noted that he was mild - moderately delayed, when they assessed him again by age 2 he was moderately to severely delayed.   

Isaac start displaying more of the common traits seen in autism and presented more like his cousin who had a diagnosis of autism already. He struggled with sensory issues, it was hard to get him to eat, he only liked beige coloured foods crackers, biscuits, apples (peeled) and of course chips and nuggets. Despite not putting food in his mouth, he would put just about anything else in there. He constantly mouthed toys. He would randomly hit us or pull hair. He would line up objects, he had to go around and close doors, he liked pressure so would lean on things, hold heavy toys on him and I often wonder if this is why he relaxed when he was tightly swaddled as a baby.  

We did weekly speech and OT until he was 3 and I asked for him to be assessed for autism. In that year he didn’t seem to make much progress at all. When he had his assessment he was diagnosed with Autism Spectrum Disorder, Global Developmental Delay and a severe language disorder.  

We had an assessment with a psychologist who specialises in autism and she said she didn’t believe he had global developmental delay and the severe language disorder and that it was just the autism. She was correct and these diagnoses have been discredited. 

We ended up moving interstate to Perth due to a number of circumstances. When we got over to Perth I was unable to access the same company for the therapy because they had a huge waitlist. We were able to work with a different company and in that 18 months we saw incredible progress.  

Isaac went from being pretty much non verbal to having many words, he was more engaged with family and peers, and we were able to reduce many of the aggressive behaviours he had initially had.  18 months later we moved back to the town we had left and people couldn’t believe how much he had improved.  

Therapy session were 3 hours long and 3 days a week, but really it just became our way of life because we out these things into practice throughout each day. It was play-based and worked with rewards systems.  While it was exhausting and required so much of my energy and mental capacity, I am so glad we did it and it’s incredible to see just how far along he has come. 

While he still has speech issues and  some difficulty with comprehension, he has come such a long way from where he began. 

The journey of motherhood so far, has been the most challenging but most rewarding thing I’ve ever done. It has pushed me to my limits but given me the opportunity to grow and learn so much. Without the hard experiences, I would not have gained the level of compassion and understanding that I have now.