Monday 27 May 2019

When Did You Know That O Was On The Spectrum?

I'm asked on a fairly regular basis, when did we know that O was on the spectrum?

And the truth is, that we really didn't know. Unlike L, who we knew was a different child from the moment he arrived, there was nothing that stood out with O. Nothing that stood out to us as parents that said O was on the spectrum.

As a baby and toddler, O hit all of her milestones much earlier than most of her peers. She sat by herself at the age of 4 months, she started talking at the ripe old age of 10 months - her first words were Mum, Dad, S%#$ and then Bull#%$@, in a Polish accent! O started walking at 11 months. In most of the developmental areas, O was like any other typically developing baby, toddler and young child. She was constantly on the go and loved to spin. All the time!

The only unusual trait that stood out to us when O was a toddler, and as a young child, was that she appeared to sit back and observe the world around her especially when it came to learning a new skill. We used to say that it was as though O was sitting back and taking everything in, then she'd get up and have mastered the skill immediately. There really wasn't any practicing skills before O mastered them.

O was an overly anxious child from a very young age but we put her anxiety down to separation anxiety. At that point in time, we knew of several other families whose children were also quite anxious. O did have some speech difficulties with the pronunciation of some sounds but as she'd also had numerous ear infections and needed grommets inserted, her speech difficulties were put down to missing key developmental hearing stages.

Her level of intelligence became clear very early on. In Western Australia, children start in Kindergarten at school when they are three. O was certainly more than ready to start school at 3. She was writing her own name and composing the most imaginative stories and she was always asking questions about the world around her. She always wanted to learn new things.

I can vividly recall picking her up after school one day and on our way in tthe car, O piped up with "Mummy, I can count in threes." She then repeated the three times table. When I asked O who taught her to count in threes, O responded with "Oh I taught myself." O was three at the time. By the end of her Kindergarten year, her teacher was extending O's learning in class by giving her Pre-Primary work.

At the age of 5, O was writing short stories of her own. She was reading books years above her age level. O discovered our book of the Complete Works of Shakespeare and she would set herself up in our dining room with this book, the dictionary and her own notebook. She would read a section of the book and if she found a word that she didn't understand (which truthfully, there weren't that many words that she didn't understand) she would look the word up in the dictionary to find the meaning and then she'd write a poem about the word! 

We'd sit back in amazement at this child who always wanted to learn. She was always asking questions about the world around her and she was always so very articulate when speaking. She was like a mini adult. This should have been one of our first clues that O was possibly on the spectrum, but we were told that O was just a very bright child.

O was very particular about how things were done, everything had to be done in a set order. She didn't seem to cope with change all that well. But as we were struggling to get L's health issues seen to, we just put these down to O being affected by what was happening with L. Another ASD trait that we missed.

At the age of 5, O's anxiety worsened to the point that we sought medical advice. From talking to her school teachers and carers at the Outside School Hours Care that she attended, she was a completely different child for them, than she was for us. At school and OSHC, O was a polite, well mannered girl. 

At home, she struggled with her emotions, O would explode with frustration, she'd have over the top emotional reactions to almost everything. When we sought medical advice, we were told that O was just an anxious child, she was diagnosed with an anxiety disorder and our then GP wanted to put her on an anti-anxiety medication. When we took the script into our local pharmacist, she liaised with one of the pediatricians at the Children's Hospital who advised against medicating O as the potential side effects from the medication outweighed the benefits. This should have been yet another sign of O being on the spectrum but at no point was this mentioned by any of the medical professionals that we were seeing on a regular basis.

L was then diagnosed with a provisional diagnosis of ASD in late 2015. Early 2016, we started noticing different ASD traits in O, especially her different stims but we were told that she was just picking them up from watching and interacting with her little brother. We were told that she couldn't possibly be on the spectrum as she made eye contact, she spoke very well and she was very social with other children.

By mid year 2016 we were again struggling with O's anxiety - we had tried mindfulness and essential oils, yoga and numerous other calming strategies but nothing was helping O. We also noticed that O was struggling socially with children who were her age. She got along fabulously with children who were much younger and with adults, but with her peers was another story. We again sought medical advice and were given a GP Mental Health Plan for regular child psychology sessions.

In was during the second psychology session that her then psychologist said to us "You need to get O assessed for ASD as I think she is on the spectrum." Keep in mind that O's psychologist specialized in diagnosing children, especially girls, as being on the spectrum and assisting in managing their anxiety.

Later in that same year, we started the ASD assessment process for O. It was during the speech assessment that it became glaringly obvious to me (and the speech therapist) that O was on the spectrum. Depending on how you look at it, O passed (or failed) the assessment with flying colours. She hit every single ASD red flag during the assessment. Her stims became much more prominent during the assessment. It was a huge eye opener to me as I sat in on the assessment simply observing. 

During the psychology sessions that I participated in, answering questions about O from birth to her then age, she hit every single red flag as well.

All I remember thinking was how on earth did we miss O's traits. How did we not see these traits when she was younger.

It was then that O's psychologist explained that some girls, not all, but some present completely different to that of their male peers. The diagnostic criteria in the DSM-V is very male based as the very first study was based solely on male patients. The psychologist explained that girls in particular can be very good at mimicking the behaviour of others and masking their own ASD traits when they are younger so that they fit into the crowd. This made a lot of sense as to O's behaviour and mannerisms.

She went on to explain that at times, girls are not diagnosed until they are teenagers as this is when the social interactions become harder and more difficult to interpret. Many women aren't diagnosed until they start the diagnostic process for their own children. She explained that many girls are either misdiagnosed at a young age with anxiety or ADHD or another diagnosis or are not diagnosed at all.

We received O's formal ASD diagnosis in June 2017. While we were expecting the diagnosis as both the speech therapist and her psychologist indicated that that is what would be in their respective reports, the level of O's ASD severity shocked us. It was a massive relief knowing that with the reports in our hot little hands we could start therapy and accessing funding but O's level of severity truly shocked us as on paper she is more severe in her Autism then L is. 

The reports also showed us just how well O is at masking her ASD traits so that she blends in with the crowd. Which then told us just how damaging masking is - O struggled at home with her emotions because she was holding it together all day at school. My then eight year old had learnt that if she masked her traits at school and other places outside of home, she was less likely to stand out to her peers as being different. 

During the lead up to O's assessment we did hit a lot of road blocks from well meaning professionals who would tell us that O couldn't possibly be on the spectrum because she made eye contact, her communication skills were above average, she was academically gifted, she was well behaved and well mannered and many other reasons.

When we gave a copy of O's diagnosis report to those professionals, they too were shocked. Many began to realise that Autism can present in many different ways and that perhaps they should be listening to parents when they raised concerns with them about their children.

Almost two years on from O's diagnosis day and we can see the difference that therapy has made for O. She still struggles on a daily basis with her anxiety but having the ASD diagnosis has opened up many doors for us in assisting O.

I know from experience and from talking with families who have just started their Autism journey, that experiences like ours in getting medical professionals to take us seriously about concerns, occur far too often. There are still many medical professionals who believe that if a child, not just girls but boys as well, can make eye contact then they simply can't be on the spectrum, that all individuals present the same when it comes to Autism traits. This is simply not the case.

Autism traits present differently from individual to individual. Hopefully over time, it will be widely accepted in the medical community that Autism can be shown in many different ways but in the meantime if you are finding yourself in this position, please keep pushing on. Keep fighting for your children.

1 comment:

  1. Keep writing and sharing. I enjoy reading every word you put to paper. My love to both O & L. xx


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