A story for families of young children diagnosed with neurodevelopmental conditions.
As a Psychologist in private practice, I regularly assist a paediatrician in diagnosing children and adolescents with Autism Spectrum Disorder (ASD) and/or Intellectual Disability (ID). Diagnoses are communicated to parents within a feedback session, where I outline the assessment findings, convey my rationale for diagnosis, its implications on their child’s functioning and provide specific recommendations that I believe will be beneficial for the child moving forward (whether it be educational adjustments, resources, additional services etc.). Although every feedback session is as unique as the individual being discussed, I often receive the same questions from parents of children with a recent ASD/ID diagnosis:
“Does this mean my child will never thrive or become a functional member of society?”
“Does this mean they will never get a job or be independent?”
Depending on the severity of the neurodevelopmental disorder/delay, this may be a reality for a minority of families, yes. However, for a lot of children this diagnosis does not dictate whether they will be a fulfilled, functional and successful individual.
I explain to parents that every child has the ability to learn and succeed. However, it is emphasised that these children may acquire new skills differently than their peers and at a different pace.
I encourage parents to be mindful that we all have our strengths and areas that require development (for example social skills/communication for ASD) and that the appropriate recommendations will seek to maximise their child’s opportunity to participate in the world in a way that is meaningful to them.
We discuss short-term goals with a reflection of their strengths, transition to increased independence and generalisation of learnt skills. With every diagnosis, my admiration of parents who transform their anxious energy into proactive and action-focused forces for their children never fades.
It is common to see families initially overcome by a sense of hopelessness, or for some families grieving a future they initially envisioned for their child. In these moments, the anxiety and uncertainty can overshadow other information provided by professionals.
My goal was to write a blog post that would instil hope in our families and what better way to achieve this than to hear from a family that has walked in their shoes. I also wanted our families to hear about a wonderful local business that supports and positively contributes to our local community, ‘Gracie’s Boutique’ in Point Cook.
For this blog, I had the honour of interviewing Kerrie White (owner of Gracie’s Boutique) and her 17-year-old daughter Gracie White, who has a diagnosis of Autism Spectrum Disorder. I also had the pleasure of briefly speaking to Gracie’s younger sister Mia White. We spoke about Gracie’s journey from diagnosis to schooling, intervention, Gracie’s life now and goals for the future. Kerrie and I also spoke about Gracie’s Boutique and its wonderful contributions to our local community.
The early years…
Alike to the reports of most parents whose eldest child receives diagnosis of ASD or ID, Kerrie reported that she did not have much experience or knowledge of appropriate developmental milestones and behaviours in early childhood, however noticed “some warning signs” as Gracie was approaching 18 months of age.
Kerrie recounted that following the birth of her younger daughter Mia and the family’s transition from North Sydney to Victoria, she approached Gracie’s new Maternal Health Nurse with concerns regarding her development and “felt that something wasn’t quite right”. Following the nurse’s observations of Gracie, she was referred for a diagnosis of Autism Spectrum Disorder and for multiple external services (Speech Pathology, Paediatrician, and Early Intervention). Kerrie stated that the family “got on the path pretty quickly” and commenced Speech Pathology and Early Intervention therapy immediately following referral.
From Kerrie’s descriptions, it seems that the Autism Spectrum Disorder diagnostic process has evolved significantly over time. Kerrie reported that families were being placed on a 12-18 month wait list for a public diagnostic assessment in Regional Victoria (let alone Melbourne). Alternatively, families could pay a costly fee to have this assessment conducted privately with little to no wait time, however as a young family it was uncertain whether this was financially viable at the time. Kerrie noted that the diagnostic/intervention process was not the same for any one family and luckily Gracie was able to be assessed within 3-4 months via a Medicare claimable service. “We met a lot of people who were in the same age group as Gracie who later went on different paths with the same result”.
When describing the diagnostic assessment itself, she relayed that it was conducted by a panel of professionals who would observe a child for the majority of the day. In hindsight, Kerrie described Gracie as “classically autistic” and she “ticked a lot of boxes” throughout the diagnostic process (spinning, several repetitive behaviours, echolalia, behavioural compulsions). The diagnostic assessment resulted in a diagnosis of Autism Spectrum Disorder provided by a Psychiatrist. “For us, it was the best outcome because at that point we said to ourselves ‘right now we know where we’re at, let’s move on and do whatever needs to be done for her’ ”.
By the time Gracie was three years of age, she was participating in intensive early intervention therapy (otherwise known as Applied Behaviour Analysis (ABA) therapy) five afternoons a week in Gracie’s home therapy room (that the family constructed themselves). Kerrie stated that Gracie’s early behavioural therapy was managed and reviewed by a Psychologist who would collaborate with the family as co-therapists. Kerrie stated that early behavioural therapy and implementing PECS (Picture Exchange Communication System) at home “made a massive difference”, however it wasn’t always smooth sailing. Despite this, the family’s ‘take things one day at a time’ approach assisted them in coping throughout these challenging periods when Gracie’s behaviour escalated.
Contrast to current funding systems, Kerrie detailed that families were financially responsible for any services required for their children, as there were no funding frameworks and scarce support groups when Gracie was young. She estimated that the costs of Gracie’s combined services reached an annual total of $40,000, which was a worthy but costly commitment for a young family.
Kerrie reported that Gracie commenced 3-4 year old Kindergarten at a Montessori centre, which promoted Gracie’s independence and play based skills. At the time, Psychologists from the Department of Education conducted assessments with children in their Kindergarten environment to determine their eligibility for entry into specialist schooling. According to Kerrie, given the inconsistency of Gracie’s engagement throughout the testing process and scoring technicalities, she did not meet criteria for entry into a special school and commenced her first term at her local mainstream government school.
Gracie’s first term in a mainstream school was described to be highly distressing for Gracie and the family. “What we thought we had in place was no longer working” “there were a combination of things that did not work for her” “at the time she was distressed and non-verbal”. “Her anxiety was manifesting in her behaviour, such as head butting walls and becoming overwhelmed”.
On one occasion, Gracie reportedly refused to pass a wire fence when requested during a school excursion, as she was adamantly adhering to her family’s rule to not pass wire fences from her grandmother’s property. Following a taxing term, Kerrie obtained exemption from the Department of Education to enrol Gracie into Western Autistic School. This enrolment was conditional provided that the family moved into the local catchment zone and with no hesitation the White family moved their life to the Wyndham area in 2005.
Gracie’s initial enrolment and experience at Western Autistic School was described to be positive. Kerrie reported that “It was a very safe environment” “it made me feel comfortable to have her there”. She recounted that although Gracie gained a lot of life skills from Western Autistic School, the family felt that Gracie would thrive from a specialist setting with more of an academic focus in addition to life skills. In 2009, Gracie was reassessed to determine her eligibility for enrolment into another specialist school. Despite being deemed unassessable as she “put her head through the wall” in distress, she was granted entry into Warringa Park School, commencing in 2010.
“Moving to Warringa Park has been a fantastic move for Gracie...she loves it there and has lots of friends”. “They’ve developed a high level of behavioural management of students, an impressive security protocol and great ratios of teaching staff to students”. “They provide a diverse curriculum for the varying life skills that young individuals want to learn”. Kerrie reported that due to the significant amount of progress made, Gracie had stopped behavioural therapy in 2010.
Kerrie’s advice for parents:
1: “Bring everything back to short term”.
2: “Be prepared to make change, it’s not ideal but it’s not the end of the world”
3: “Take a pause, take a breath”
4: “Celebrate the small wins and surround yourself with people that understand how significant the small wins are”
5: “You are your child’s best advocate, it can be overwhelming but it’s a cause worth fighting for”.
Kerrie’s advice for parents:
Gracie reported that Mondays at Warringa Park School consist of her favourite subjects (Literacy and Mathematics) and that the rest of the week is dedicated to work experience and other specialist classes. Gracie reported that she has previously participated in work experience at Caley’s Café, Gervey’s Kitchen in Tarneit, Vinnies and Red Cross. This term, Gracie stated that she is completing work experience at Plants Galore in Werribee South. She noted that she’s completing “Travel Ed” and recounted that she recently practised a train commute from Werribee Station to Flinders Street Station, a tram down to Albert Park, as well as tram to Brunswick. She reported that she also learns makeup, skincare and hair grooming/styling at school. Gracie expressed that she enjoys her hospitality classes and stated that she has mastered several recipes including pasta, pancakes, omelettes, spanakopita, apple cinnamon cakes, steak sandwiches, mac and cheese, burritos, curries and noodles (I was tempted to stop her from listing any more recipes before I started drooling, yum!). Gracie reported that she loves to cook and creates a number of dishes at home using the safe knife skills taught to her at school.
When asked about her career aspirations and future goals, Gracie stated that following the completion of Year 12 in 2019 she would like to begin working at Plants Galore. Mia and Kerrie admiringly shared that Gracie is relentlessly dedicated to whatever goals she sets.
If the inviting storefront, charming pieces or ABSOLUTELY irresistible homewares (I’m serious, you won’t leave there empty handed) isn’t reason enough to visit Gracie’s Boutique, allow me to briefly capture its involvement with our local community.
On the occasional Saturday, Gracie will work at Gracie’s Boutique. She reported that she films many promotional videos for the store on social media, steams clothes, creates stickers and stamps store bags. In addition to her many talents and achievements, Gracie creates the beautiful artwork that’s printed on greeting cards that are sold at Gracie’s Boutique (pictured in this blog post). Kerrie reported that Gracie’s passion for drawing and birthdays is what birthed the idea of her greeting cards.
When Gracie isn’t at school or working at Gracie’s Boutique, she enjoys dancing, shopping and is a member of ‘Team Strikers’, a bowling team in her local area. Despite her achievements, it was noted that Gracie still experiences challenges from time to time. Her reported best way of coping on days when she is angry, confused or when she doesn’t understand something is to “take a deep breath”.
Gracie was a vivacious and hilarious young woman who was a pleasure to interview. The photo of the two of us at the top of this post is a selfie that Gracie took! (Permission provided by Gracie’s mother to post photo).
This story is a shining example of how the perseverance and dedication of a family paired with the right intervention can make a significant impact on a young person’s life. I’m looking forward to hearing of Gracie’s future notable achievements to add to her successes. Thank you to Kerrie, Gracie and Mia for their time and for sharing their inspirational journey.
Sarah Gatt, Psychologist
What is Autism Spectrum Disorder?
Autism Spectrum Disorder is characterised by difficulties in the core areas of social communication and language, together with restricted, repetitive behaviours, interests, or activities.
The presentation of Autism Spectrum Disorder varies considerably between individuals. Therefore, a comprehensive assessment is needed.
Who Makes a Diagnosis?
In Victoria, best practice for an Autism Spectrum Disorder Assessment involves a multidisciplinary team. This means that multiple professionals work together to carry out a wide-range of assessments.
A multidisciplinary team usually includes: a paediatrician or child psychiatrist, a psychologist, and a speech pathologist. In addition, other professionals might also be included, such as an occupational therapist. All professionals come together to bring insight based on their areas of expertise.
What might be involved in a comprehensive Autism Spectrum Disorder Assessment?
An Autism Spectrum Disorder Assessment involves an in-depth analysis of your child’s
developmental and medical history, as well as an assessment of your child’s current strengths and challenges. Each professional gathers this information over multiple sessions. Generally, they will do this through:
Once each of the professionals has completed their assessment report, the paediatrician or child psychiatrist will bring all the results together and make the final decision as to whether the criteria for Autism Spectrum Disorder is met.
Where do I start?
If you would like to discuss your situation and the possibility of Autism Spectrum Disorder, please book in an appointment with one of our psychologists experienced in the assessment and diagnosis of Autism Spectrum Disorder. Alternatively if you are sure you would like an assessment you can make an appointment to see your G.P. and request a referral to see a paediatrician. The paediatrician will do an initial assessment of your concerns and may then refer you to a psychologist and a speech pathologist for a multi-disciplinary ASD assessment.
When might these occur?
Children with Autism are most commonly thought of when there is mention of sensory
sensitivities or sensory behaviours. One of the criteria that a child with Autism may meet is
experiencing hyper (high) or hypo (low) reactivity to sensory input or unusual interests in
sensory aspects of the environment. There are also children who may not have a diagnosis who may present with sensitivities to some extent.
How do I know what to look for?
There are many categories of senses: sight, sound, touch, taste, smell, balance and we can even extend to include proprioceptive and vestibular input. There are two common presentations of sensory sensitivities.
Hypersensitivity occurs when sensory input exceeds a person’s ability to cope. This is a low sensory threshold and the child is explained as a sensory avoider.
Hyposensitivity occurs when greater than normal levels of input are required for registration. This is a high sensory threshold and the child may be seen as a sensory seeker.
Why might a child engage in sensory seeking or sensory avoiding?
Whether a child is seeking or avoiding sensory input, there are reasons behind the behaviours we can see. These may include the following, but can include many more:
What can I do to help?
As with any behaviour, if we can find out or make a prediction of why it is happening and what function it serves, we have a much better chance of making a successful support plan for the child. But how do you figure this out? Watch your child in various environments and observe their behaviours and reactions or even just ask them. Ask others involved in your child’s care also – it’s important to gather information. Be a detective!
Here are some tips that were shared on our blog recently about functions of behaviour – check it out:
Below are some common examples of behaviours and how you may be able to assist.
If a child is seeking sensory enjoyment:
Yes, sometimes these behaviours are enjoyable for a child, but are disruptive to the child’s
opportunities to socialize or it may be impacting/disrupting their learning or attention. If this is a behaviour that is safe, gently speak to your child (or use pictures) to explain it is not time for this just now; however, they may have some time to engage later. Remember, it’s okay for a child to engage in these behaviours sometimes; they serve a function. You also may like to suggest to a child they engage in these when it is time for them to follow their own ideas/explore their environment or when they take a break.
If a child is engaging in a disruptive sensory seeking behaviour:
If you believe the behaviour is inappropriate or disruptive, For example, if a child enjoys biting and sucking their school T-shirt, but this is the tenth one you’ve purchased this year! you may like to further explore why are they biting that material in the first place (Boredom? Anxiety? Is it a concentration aid? Does it calm them?). You may then consider providing alternative opportunities that serve the same function. If this really is just for comfort or concentration, they may like to have a more appropriate option (a small piece of similar material available to them that they can use). If this is due to anxiety, we need to look further into teaching effective and appropriate coping skills. Your child needs a proactive strategy.
If a child is a sensory avoider, provide appropriate ways for sensory avoiding where possible:
Can you help the child to communicate their discomfort in an appropriate way? Or maybe a child can be taught how to minimize the effect the sensory experience has on them. They should always be taught how to cope through a sensory experience as well as being given a way to minimize its effects. The world is an unpredictable place and your child may inevitably experience what they are trying to avoid at some stage.
A summary - How do we understand and how do we help?
If you believe your child may benefit from an integrated and individualised plan, speak to our Client Relationships Team today to discuss a practitioner who may be suitable to assist you and your child.
“It will never rain roses: when we want to have more roses, we must plant more roses”.
― George Eliot (Novelist, poet, journalist, and one of the leading writers of the Victorian era)
by Melissa Bailey, Psychologist
Why should we know the difference?
A common theme that comes up in working with children and adolescents is bullying. Often I hear reports from clients who feel they are being bullied at school, which is obviously troubling for both the client and the parent, as nobody wants to be bullied and no parent wants to hear that their child is being bullied, or feels uncomfortable going to school.
Although a child may genuinely believe that they are being bullied, not all reports of bullying can actually be defined as such. In some cases the child may perceive teasing to be bullying, whether it is intended to be playful and harmless or goes too far and becomes hurtful.
In particular, kids on the autism spectrum, or who have social difficulties, tend to have a more challenging time interpreting social situations and may perceive teasing as bullying. Therefore it is important that kids (with or without ASD) and their parents understand the difference so that they can appropriately handle the situation, whether that be to work with the school to address the bullying and/or to seek assistance through school programs, a psychologist or counsellor to help develop and build a child’s resilience and assertive communication skills.
What is bullying and teasing?
Bullying: The National Centre Against Bullying (NCAB) define it as when an individual or a group of people with more power, repeatedly and intentionally cause hurt or harm to another person or group of people who feel helpless to respond. Therefore bullying is not a single episode of rejection, acts of nastiness or mutual arguments, disagreements or fights.
Teasing: Teasing is a social exchange and can be friendly, neutral or negative. Teasing or being mean is different to bullying as there is usually no power imbalance.
Although teasing can be hurtful and unkind it’s common among children and so it is important to know the difference as they may require different responses. Whilst I understand it’s common amongst children, I don’t condone bullying or being mean, and feel that it’s important for us to have common terminology so that we can assist children in the most appropriate way.
Child Behaviour: The importance of figuring out WHY in order to cease the negative and encourage the positive
What is behaviour?
Behaviour is the way someone acts or conducts themself, especially toward or around others. When discussing children’s behaviours, we often find ourselves using the terms positive and negative behaviour or appropriate and inappropriate behaviour.
Difficult Behaviours and why we act so quickly around them
Children may at times display negative or inappropriate behaviour. As parents and adults, our first thought is to react to this behaviour straight away to try to cease it, because it is not considered appropriate in the current situation. The behaviour may be having negative effects on other people or their thoughts about the child or about us!
Why do behaviours occur?
Behaviour occurs for many reasons. The reasons we behave are called functions. There is often a function of every behaviour we see or do. The function is the Why. A person may be trying to gain someone’s attention, seek control of a situation or express their thoughts or feelings, none if which are wrong. The difficulty some children may encounter is in understanding how to use positive and appropriate behaviours instead.
Noticing why behaviour is occurring is extremely important. We need to know why behaviour is happening and what a child wants, so that we can assist them to gain this in an appropriate way.
When children have not independently clued onto how to behave in a positive manner, to get what they are after, they may continue to use negative behaviour because this is what they are familiar with… and maybe it has been working for them so far!
Proactive and Reactive Methods
Reacting to behaviour to try to stop or reduce behaviour after it has occurred is surprisingly called… a reactive strategy. Reactive strategies can include giving verbal feedback to a child or a fair and logical consequence occurring.
Teaching a child a skill (like how to gain something in an appropriate way) before the child is in a situation is called using a proactive method. Using a proactive strategy gives a child the appropriate behaviour to use, and gives them the best chance to demonstrate a positive behaviour. They then have a better chance of what they want, which will encourage them to use the desired behaviour again.
Do we need a more systematic game plan?
If you find that a negative behavour is occurring again and again, and you can’t seem to redirect the behaviour to something more appropriate, these tips may help:
- Do they want someone’s attention?
- Do they want to be in the ‘drivers seat’ of the situation?
- Are they trying to communicate a thought or a feeling?
- Are they trying to release frustration?
- Are they trying to regulate themselves or self-soothe?
- Are they trying to avoid something?
Knowing how to respond to behaviour, to encourage positive skills, and discourage negative behaviour is a tricky task. Every child is extremely different and will be encouraged and discouraged with varying methods of adult responses. If you have noticed difficult behaviours and would like some assistance to increase your child’s skills and to encourage positive behaviours, please contact us - we are here to help.
by Jessica Cleary, Psychologist
This simple 5 minute clip is a great introduction to autism! With an aim to raise awareness amongst those who don't really understand the condition, this short film is a good place to start.
Who might benefit from watching?
April is Autism Awareness month. This year we want to reach out and help teachers understand more about autism and to feel confident in supporting children who have autism. For this reason we have created Autism Spectrum Disorder Teacher Resource Packs especially for the classroom teachers and school well-being staff of our clients.
This month our psychologists are handing these resource packs out to the parents of each child on the autism spectrum to pass on to their school.
The packs contain the following:
In Term 1 we ran our first Lego Social Skills Group. We had 10 participants from ages 5-13 across two sessions. The children quickly warmed up and became engaged and enthusiastic to belong to the group.
The group members had a diverse set of interests, skills and personalities, and we enjoyed getting to know them all. Parents generally enrolled their children because they felt a need for the children to learn more effective social skills and that meant different things for different families.
For some children this meant learning assertiveness or knowing how to make and keep friends. For others, the parents were concerned about limited cooperation, sharing and turn-taking skills.
While many of the children had a diagnosis of Autism Spectrum Disorder and/or Attention Deficit Hyperactivity Disorder (ADHD), this was not a criteria for group entry. The one thing all children had in common was their love of Lego and eagerness to work on the group projects.
We started each session with a mini-lesson. These lessons included topics such as: tone of voice, assertiveness, communicating with our eyes, and how to fill someone's 'bucket' with our kind words and actions.
In groups of three, children then began their group Lego projects. One child was the engineer (in charge of reading the instructions), one child was the supplier (had to find the pieces) and one child was the builder (put the pieces together). These roles changed each week. The children had to communicate clearly, wait their turn, practice frustration tolerance, and do their job in order for the project to be successful. They also got to celebrate together and felt a joint sense of pride when they achieved their goal.
The role of the psychologists was to facilitate the interactions and assist the children with problem solving, task behaviour, joint attention, effective communication and adaptive coping strategies when things weren't going their way, and provided positive reinforcement for appropriate social interactions.
The content of our group sessions was guided by research that has shown Lego-based interactive therapy in this format improves social competence over the long-term.
In the final weeks of term, we taught the children how to make stop motion animations using the Lego Movie Maker app. Children worked in pairs to decide on characters, build a set, create a plot and take the photos to make their movie. Again, the psychologists coached the children to use their social communication skills during this project.
All in all, Lego group was a hit, and the children enjoyed the sessions (and I suspect for the most part they did not even realise they were 'learning' as the coaching merged seamlessly into the activities).
Bring on Term 2! To register click here
Today Sesame Street introduced us to Elmo's friend Julia, who has autism. Julia is part of the Sesame Street and Autism: See Amazing in All Children initiative.
This initiative aims to increase understanding of autism and to reduce stigma and isolation often experienced by children with autism and their families.
The unique quality and talents of all children are celebrated and the commonalities that children with autism share with all children are emphasised.
There are excellent resources available on the Sesame Street website for families and carers of young children to assist with the challenges of daily living.
What you will discover:
If you want to learn more about Autism Spectrum Disorder but don’t know where to start then here is a selection of my favourite books and resources to get you going.
Ten Things Every Child with Autism Wishes You Knew: Updated and Expanded Edition (by Ellen Notbohm)
Recommended for parents who have a child recently diagnosed with Autism Spectrum Disorder.
The Complete Guide to Asperger's Syndrome (by Tony Attwood) A comprehensive volume written in easy-to-read non-technical language. There is a good mix of research information, first person reports and clinical information.
Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism (by Will Richards) This brief book is useful for parents and teachers to determine the cause of meltdowns and how best to avoid them.
No More Meltdowns (by Dr Jed Baker) Great information and strategies for home and school. Three sections: The Problem, The Solution and Plans are interwoven with stories of how the strategies have been used with different children.
Books for Children:
The Red Beast: Controlling Anger in Children with Asperger's Syndrome (by K.I. Al-Ghani) This storybook is written for children aged 5+, and is an accessible, fun way to talk about anger, with useful tips about how to 'tame the red beast' and guidance for parents on how anger affects children with Asperger's Syndrome.
The Panicosaurus: Managing Anxiety in Children Including Those with Asperger Syndrome (by K. I. Al-Ghani) This fun, easy-to-read and fully illustrated storybook will inspire children who experience anxiety, and encourage them to banish their own Panicosauruses with help from Mabel's strategies. The helpful introduction explains anxiety in children, and there is a list of techniques for lessening anxiety at the end of the book.
Why Do I Have To?: A Book for Children Who Find Themselves Frustrated by Everyday Rules (by Laurie Leventhal-Belfer) This is the ideal book for children who have difficulty coping with the expectations of daily living, as well as for their parents and the professionals who work with them.
The Asperkids Secret Book of Social Rules (by Jennifer Cook O’Toole) The handbook written by a mum with Asperger's Syndrome says it's a book "that every adult Aspie wishes they’d had growing up". Ideal for 10-17 year olds.
Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family (by Jude Welton) Adam helps children understand the difficulties faced by a child with Asperger's Syndrome (AS); he tells them what AS is, what it feels like to have AS and how they can help children with AS by understanding their differences and appreciating their many talents. Ideal for 7-15 year olds and also serves as a good starting point for family and classroom discussions.
Teacher Assistants Big Red Book of Ideas (by Sue Larkey & Anna Tullemans) Hundreds of ideas to try. Setting up the classroom, the role of the teacher assistant, behaviour in the classroom and playground, stages of anxiety, transition, sensory toys and activities.
Teacher Assistants Big Blue Book of Ideas (by Sue Larkey & Anna Tullemans) Strategies regarding Social skills: playgrounds, friendships, building self esteem, bullying. In the classroom: getting on task, adapting tasks and exams, building independence. Managing anxiety and behaviour.