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.

Friday 17 May 2019

Crossing the Mid-Line .... What does this mean?

**** Please note that I am not a medical professional. The following information is based on our own experiences. 
If you believe that you or your child has difficulty in crossing their mid-line, 
please consult with a trusted medical professional. ****

One topic that I have touched on briefly in a previous post is crossing the mid-line. I was recently asked why this was so important so I thought that I would revisit this topic.

So what is the mid-line?

The term "mid-line" describes the invisible and imaginary line that runs down the centre of our body and divides the body into the left and right. If you like, this line runs down our spine from the base of our skull, through all of our vertebrae to the bottom of our back. Literally.

Crossing our mid-line refers to having the ability to reach across this invisible line in the middle of our body with both of our arms and legs. Being able to cross our mid-line is an important developmental skill that is needed by everyone for many everyday tasks. Reading, writing, reaching to our feet to put on shoes, using a knife and fork, being able to put clothes on and off, hitting a ball with a bat, catching a ball ... all of these tasks and many more require us to be able to cross our mid-lines. Any time that your right (or left hand) crosses over to the opposite side of your body, you are crossing your mid-line.

Having the ability to cross over our mid-line is not an ability that babies are born with. Typically developing children develop the ability to cross their mid-lines through play. Reaching for toys, babies playing with their toes, exploring toys and other objects with their hands. drawing or painting and so on all assist in developing the ability to cross the mid-line.

When we spontaneously cross our mid-line with our dominant hand (in my case, my right hand as I am right handed,) then the dominant hand gets the practice that is needed to develop good fine motor control. If a child struggles to cross their mid-line, then both hands (and feet) will receive equal practice at developing skills. This then means that they will have less skilled hands rather than one more skilled, or dominant, hand.

L was one of those children who struggled to cross his mid-line. His inability to cross his mid-line became evident when he was drawing or painting. When drawing or painting on a piece of paper, if he wanted to draw or paint on the left hand side of the page, he would turn the page on the table to get to the spot that he wanted to decorate rather than move his hand across the paper. L was physically unable to put his hand across his body to the left hand side. It was also evident when he went to reach for toys that were across his body. If a toy was on his left hand side, he would only ever reach for it with his left hand and vice versa on the right hand side of his body. We also noticed that L was neither right or left hand dominant in other words, he'd use both hands (and feet) equally when completing tasks.

L also had difficult in swapping hands mid way through a task such as passing a crayon or toy from one hand to the other. L struggled, and still does, to dress himself. When engaging in fine motor control, L would usually end in a state of extreme frustration as he struggled to complete the task successfully. For a very long time, L would avoid colouring and drawing activities.

L's gross motor skills were well developed but when kicking a ball, he'd often use both feet (but not at the same time) to kick balls around the yard. This indicated that he was neither left or right dominant.

When L was in kindy he was desperate to be able to write his own name, but crossing the mid-line can be a pre-cursor to be being able to write from left to right on a page.

Having a difficulty in crossing the mid-line can also make it difficult for an individual to visually track a moving object from one side to the other of their body. L would move his entire head to track an object rather than just using his eyes.

Once I'd learnt a little more about the mid-line and the importance in being able to cross it, I was a little confused. When O was a new born, I'd learnt about baby massage and moving a babies arms across their bodies during play. O enjoyed this as a baby and L did to some extent. O didn't seem to have any struggles with crossing her mid-line and yet L did. And yet I'd done the same exercises with O and L. 

It wasn't until I was assured by L's Occupational Therapist that it was nothing that we did, or didn't do, as parents. Some children just need extra assistance in learning this skill.

Knowing all this got me thinking - how does crossing the mid-line actually develop?

Having the ability to cross the mid-line is important on a physical level as well as on the brain level. In terms of the brain level, if an individual is unable to cross their mid-line, this may indicate that the left and right sides of their brain (the left and right hemispheres) are not communicating well together. The left and right hemispheres communicate with each other across a mass of tissue called the corpus callosum and because each hemisphere carries out different neurological tasks, the two hemispheres need to work together.

Crossing the mid-line begins to first emerge in the infant years as a child begins to develop their bilateral coordination skills. They do this by using both hands to reach for toys and other objects, pulling and pushing themselves along the floor, crawling and so on.

Through play and exploration, a child will then learn to coordinate their strong hand or foot (or dominant hand or foot) when doing particular skills. They'll also develop their other hand or foot, their assistant or helping hand. For example when using scissors - their dominant hand will hold the scissors and their helping hand will hold the paper. Through play and exploration, they will also spontaneously cross their mid-line. They may be a little clumsy at first, but they will become more skilled at this.

Another factor in being able to cross the mid-line is trunk rotation. If a child has a low core stability, then this may affect their ability in being able to cross their mid-line. This comes back to proximal stability before distal mobility! L was, and still does, sit in a w position. When sitting in a w position, this can affect trunk rotation as the position itself places limitations on how much the individual can rotate their trunk. 

So armed with all of this information we set to work in assisting L to develop the ability to cross his mid-line, with the assistance of his therapists at the early intervention centre that he attended. Through play, L was practising crossing his mid-line on a daily basis but we also incorporated practising this skill into other activities at home.
  • Drying dishes - One of L's favourite household chores is drying the dishes - one day, his future partner is going to love me! We used to have a small child's table that we used for various reasons in our house. I would seat L at the table, put the dish towel in his right hand and the wet dishes on the left hand side of the table. Through the action of reaching across the table to the wet dishes he was crossing his mid-line each and every time. I'd also encourage L to then try and use the dish towel in his left hand and the dishes on the right hand side of his body so that both sides had an equal opportunity to practise the skill.
  • We'd encourage, and still do, L to dress himself so that both sides of his body could work together.
  • Painting - I'd always put the paint on the opposite side of the table and ask L to try and reach the paint without moving his body. Again, every time he reached for the paint, he'd have to cross his mid-line.
  • Car letters and numbers - We have created a game board for L to practise his letter and number recognition skills. I have put letter and number stickers on the top of toy cars and have laminated words that L wanted to learn how to spell. L sits directly in front of the board and we put the cars that he needs to his left. Again when he reaches for the cars that he needs, he has to cross his mid-line!
  • We have balance boards and gym balls that L will sit on and bounce on, all the while developing his core stability.
  • We'd play ball games and we'd encourage L to catch and throw a ball with both hands.
  • When we noticed that L was seated in a w-position, we'd encourage him to sit with his legs out in front or with his back up against the furniture or the wall so that we could develop his core stability.
In the beginning of our journey, we would model to L on how to do the skill. This helped tremendously in L being able to successfully complete the skill. And when he became frustrated, we'd offer him reassurance and encouragement! Three years on and we still practise this skill with L. He still becomes frustrated to an extent, but his ability to cross his mid-line in now much stronger.

Sunday 12 May 2019

What are other traits associated with Autism?

Earlier this year, I was asked to present at a professional development session for early childhood educators. The presentation? All about Autism and Sensory Processing Difficulties.

The presentation was received so well that I thought that I would use part of my presentation on my blog as I'm often asked questions about Autism and O and L. So here goes!!

This is part four in which I have been discussing different aspects of Autism. The first three parts of this series focused on The Triad of Impairments. You can access Part One here, Part Two here and Part Three here.

As well as the Triad of Impairments there are other traits that are often associated with and seen in individuals who have been diagnosed with Autism. Before I go on, please keep in mind that many of these traits are seen in typically developing children, the difference is the intensity in which the traits present. I'll be referring to children who have been diagnosed with Autism but many of these traits are also seen in adults who have been diagnosed with Autism.

Children with Autism, at times, don’t notice when or understand why, another child is crying, has been hurt or when they hurt someone’s feelings. It isn’t because they lack the capacity to have those emotions, they have a developmental delay in that area. Likewise, some children with Autism are not aware when they are smothering other children with affection. This isn’t deliberate, they are not aware that other children have had enough.

L still struggles to understand when and why others, including us, are sad, upset or angry. Hugs are definitely on L’s term! O on the other hand still needs to be reminded that other children, including her brother, do not like extra long squishy hugs even when they are trying to push her away.

Children with Autism are prone to over the top emotional outbursts – meltdowns – and these can and do occur on a regular basis and can be very, very intense. Meltdowns can occur when the child is experiencing sensory overload, when routines are changed, when they are in physical discomfort, when they are stressed and due to many other situations. A meltdown may occur for no apparent reason and may be unexplained. 

During a meltdown the child may lash out at those nearby, they may thrash their body around, they may say things to those around them, they may scream and shout or they may just sob uncontrollably. During a meltdown, a child is not in control of their body and often they will have no recollection of what they did or said once the meltdown is finished. During a meltdown, you will not be able to reason with the child as they physically can not hear you. The best thing that you can do during a meltdown is be nearby for reassurance and to ensure that the child doesn’t injure themselves.

The pain threshold in children with Autism can vary from very high to very low. Those with a very high pain threshold are simply not aware that they should tell a parent or carer when they are injured or sick. L’s pain threshold is super high to the point that in 2017, we stopped counting at 17 different incidents that he did to himself through play or exploring his environment. These ranged from sticking objects in his ears - we're up to the count of 5 different occasions -  a concussion and possible skull fracture from falling out of the school bus on the first day of school, getting his head stuck in a toilet seat, getting his fingers stuck in a science toy, he had a permanent lump on his forehead for about 8 weeks when he kept hitting it in the same spot accidentally over and over, he’s knocked his top two teeth out, he has impaled a garden hoe between his toes and many others. L makes life interesting. His catchphrase is now “I’m okay, there no blood!” and he now has a favourite nurse and is known by name in the accident and emergency departments and ENT departments at four hospitals in two states of Australia!

Many children with ASD are unable to differentiate between hot and cold temperatures. You’ll be able to easily recognise these children – they’re the ones wearing winter clothes all year round or they will be butt naked all year round. L does not feel the cold and if we let him, he’d get around in a pair of jocks in winter. His all-time favourite winter onesie is a Pikachu thick onesie. During summer, this gets hidden from him.

Many children with ASD have little to no awareness of safety and/or danger and seem to be fearless. They will do things that even adults will shake their heads at. They may run off from their parents or carers. They don’t do this deliberately – quite often it is to get away from a sensory input or they will see something that they want to look at and it will not occur to them to tell an adult where they want to go.

Many children with Autism may struggle with complex multiple step instructions. Their brain will hear the first step, process what that step involves and by the time that they have completed the first step, they’ve forgotten the rest.

In many cases a child’s processing time will be much longer than that of their peers. They may not answer you or respond to you straight away as their brain is processing what you are saying or asking of them.

Children with ASD may be prone to “w” sitting. W-sitting describes when a child is seated on their bottom, with their knees bent and legs splayed out to their sides in what looks like the letter "w.“ Children with ASD will often prefer a w-sitting position to sit in as opposed to other more challenging and tiring positions. The reason for this is that when seated in a w-sitting position a child does not need to engage their abdominal muscles. When seated in the more conventional cross-legged position, a child must engage their abdominal muscles to stay upright. Sitting in a w-sitting position provides a very stable base for the child's trunk and hips and therefore allows a child to move easily to play on the floor. However, the movement is generally in a forward and backward motion as opposed to moving and turning from side to side. 

One of the issues with the w-sitting position is that it does not allow or permit a child to perform trunk rotation, or twisting and turning, and lateral weight shifts, side to side motion, to reach toys on either side of the body. The development of trunk rotation and weight shifts over to one side and to the other is vital in children as both assists in maintaining a child’s balance while running and walking as well as when climbing and playing on play equipment. It is also necessary for being able to cross our mid-line when writing, drawing, turning pages on books, dressing themselves and other similar skills. Sitting in a w-position on a long term basis may cause orthopaedic issues in a child's hips, knees and feet as well as tightness in the leg and hip muscles.

Sleep disturbances and sleep disorders are quite common among children who are on the spectrum. It is unclear why but one train of thought is that children with Autism simply do not produce enough Melatonin. Melatonin is a natural hormone that is produced and secreted in our bodies by a very small gland found in the brain. During the day the pineal gland is inactive, however when the sun begins to go down it is kicked into action and Melatonin, or the Dracula of Hormones is released! 

Melatonin is important in helping to regulate our circadian rhythm or our internal body clock, and regulating our cycle of sleep and wakefulness. Melatonin levels in our body vary in our twenty four hour cycles. Normally our bodies production of Melatonin is reduced by simply being in bright light and the levels increase at night time. We have receptors in the back of our eyes that when they receive light, they send a signal to the pineal gland which then suppresses the production of Melatonin. When natural light decreases, Melatonin levels are gradually increased and they remain high while it is dark. When the receptors are again exposed to light in the morning, Melatonin production is suppressed and our Melatonin levels drop.

There are many other traits that may be seen and are associated with Autism. Not all individuals diagnosed as ASD will exhibit these traits and no two individuals who have been diagnosed with ASD present the same.

Autism really is a spectrum!

Monday 6 May 2019

Triad of Impairments Part Three - Restricted and Repetitive Behaviours, Activities and Interests.

Earlier this year, I was asked to present at a professional development session for early childhood educators. The presentation? All about Autism and Sensory Processing Difficulties.

The presentation was received so well that I thought that I would use part of my presentation on my blog as I'm often asked questions about Autism and O and L. So here goes!! 

This is Part Three in which I'll focus on Restricted and Repetitive Behaviours, Activities and Interests.

You can access Part One - Communication Impairment here and Part Two - Impairment in Social Interaction here!

Individuals diagnosed with Autism have difficulties in three main areas. These areas are known as the Triad of Impairments.

3. Restricted and Repetitive Behaviours, activities and interests.

Before I begin to discuss the third area, Restricted and Repetitive Behaviours, Activities and Interests, please keep in mind that many of these traits are present in typically developing children. The difference in those diagnosed with ASD is the intensity in which these traits present. In a child with ASD, the traits are much, much more intense and they are ongoing. I’m going to refer to children with Autism but all of these traits may be present in Autistic adults as well.

Individuals diagnosed with Autism often have a restricted and repetitive range of behaviours. Again this can be present in typically developing children, the difference is the intensity.

Children may play with objects in an unusual way. Children may show repetitive interest in spinning the wheels of a toy car, rather than playing with it in an imaginative way or pushing it along the ground. They may line objects up or arrange objects in groups – L likes to line objects up, O likes to group objects which makes life very interesting and very loud at times when they’re lining and grouping the same set of objects.

Children diagnosed with Autism may not play “pretend” games, they may not imitate others or use toys in creative ways, however, be mindful as these traits can also be seen in children without Autism. They may prefer to stack objects rather than play with them in a more traditional way. They may prefer to play with toys that are not necessarily age appropriate.

They may only play with a few toys – for example, L’s interest has always been all things superheroes. Almost any game that he plays will always be with his superhero figurines, toys and cars. And if he starts off playing a game that doesn’t involve superheroes L will invariably be turned into a superhero game. Individuals may have a restricted interest in a very narrow topic area - O’s interest is all things space – she can tell me anything and everything about moons, planets, stars, asteroids and so on, yet will struggle to tell me about her day at school.

Children diagnosed with Autism may repeat the same actions or movements over and over again, such as flapping hands, rocking, twirling, they may wriggle their fingers, stroke their hair over and over, walk on tippy toes, bounce on the spot, spin on the spot and so on. This is known as stimming and it is a self-regulatory behaviour. Stimming is how individuals manage their own emotions and quite often an individual will present with different stims for different emotions.

Children diagnosed with Autism may have repetitive speech patterns or echolalia. Individuals may say particular phrases or words that they’ve heard over and over. When answering a question they may repeat the question back to you before answering the question. They may be able to echo back to you or mimic words that you ask them to say. Below is a clip of L and his echolalia.

L was non-verbal up until the age of three. At the age of three when he was diagnosed with ASD he voluntarily could speak a grand total of 20 words however if you asked him to say a word like “dog,” he could usually repeat it back, however, these words were never used in his day to day vocabulary. Even now he will revert to using echolalia when stressed. 

Keep in mind that echolalia is developmentally appropriate for young children – think of babies babbling. Babies will babble mimicking their parent's tone of voice and sounds that they hear. This is echolalia. When a child echoes back to you what you’ve just said, they are recalling a memory in their brain on how to reply to you. Echolalia gives a child time to process what you have asked of them. 

A child with Autism may also use Scripted Speech – they may recite lines from movies or television shows word for word and they’ll often recite particular phrases at particular times. Scripted Speech is often associated with emotions – if they’ve heard something when they are sad, they may repeat the phrase each time that they are sad.

Many prefer routine and will do the same thing the same way each and every time. They may have difficulty in flexibility with these routines. Children with Autism have a strong preference for routine and predictability. They may resist an activity that they are not familiar with. Many children with ASD thrive in environments that have routine, schedules and structure as they are predictable. If their world operates the same way every day, they feel safe.

Individuals may display unusual distress or unusual reactions to everyday sights, sounds and movements - which is Sensory Processing Difficulties!

Wednesday 1 May 2019

2019 Autism Awareness and Acceptance Memes

It's April again, well May actually, which means that Autism Awareness and Acceptance Month has been and gone!

This year I decided that I would create a series of memes highlighting different facets of Autism as well as some of my favourite quotes. O and L have also contributed to a few memes with their thoughts.

And here they all are in one place. Enjoy!